angelman today january - february 2014 edition
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Angelman Today
INCLUDING RESOURCES RESEARCH INSPIRATION
digital magazine
Reduce
Seizures
with the
LGIT
Happy New Year
I am so excited to welcome in 2014 Last year was wonderful As
you know we first launched Angelman Today over the summer
and had such a great response with support from the community
and the scientific and medical professionals involved with
Angelman Syndrome
I am hopeful for the future with the ongoing research projects
funded by the hardworking foundations across the globe I am so
very happy to see the alliance of foundations in funding research
I not only wish you health and happiness in the new year but will
search high and low to find you information products and
services to help make your today easier and your future brighter
We brought you the article last edition about MAPS doctors they
are in my experience the ticket to a healthier today and an even
better tomorrow
Warm Wishes
Lizzie Sordia
Editor - in - Chief
EDITORrsquoS LETTER
WWWANGELMANTODAYCOM January February 2014
Angels in Action - Rylee age 9helliphelliphellip6
A Cure for Louiehelliphelliphelliphelliphelliphelliphelliphelliphelliphellip9
By Terry Jo V Bichell MPH CNM
Fat and the Human Brainhelliphelliphelliphelliphellip16
The History of Angelman Syndrome18
International Angelman Dayhelliphelliphelliphellip19
The Gift of Helplessnesshelliphelliphelliphelliphelliphellip21
Angels in Action ndash Lukas age 15helliphellip24
Aromatherapy for Angelshelliphelliphelliphelliphellip28
LGIT (Low Glycemic Index Treatment)
Chocolate Help Milk
by Sybille Kraft Bellamyhelliphelliphelliphelliphellip32
Interview with Dr Thiberthelliphelliphelliphelliphelliphellip33
About the Low Glycemic Treatment
Angelman Syndrome and Sleephelliphellip38
Angels Week Offhelliphelliphelliphelliphelliphelliphelliphelliphellip40
Vacation Giveaway
Valentine Raspberry Moussehelliphelliphellip44
ABA ndash Applied Behavior Analysishelliphellip46
Whatrsquos inside
Angelman and Associated
Foundations
Angelman Portugal hellip10
The Angelman Syndrome
Foundationhelliphelliphelliphelliphelliphelliphelliphelliphellip14
The Angelman Network ndash New
Zealandhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip20
THERAsurfhelliphelliphelliphelliphelliphelliphelliphelliphellip26
Angelman Syndrome Belgiumhellip27
Casa Angelman Argentinahelliphelliphellip30
Israeli Angelman Syndrome
Foundationhelliphelliphelliphelliphelliphelliphelliphelliphellip31
Angelman Syndrome
Association Spainhelliphelliphelliphelliphelliphellip35
Canadian Angelman Syndrome
Societyhelliphelliphelliphelliphelliphelliphelliphelliphelliphellip37
Nina Foundationhelliphelliphelliphelliphelliphellip43
Angels Week Off
Vacation Giveaway 44
18
40
19
Cover
Maycol Buffet
3 yrs old AS
From Argentina
46
4
Potty Training Tips By Keisha Tipton Mom to Rylee age 9
Here is Ryleersquos data form that I use
-I simply mark the date and time that I
took her to the bathroom
-Then I place a checkmark whether she
went 1 or 2 in the potty
-In the comments section I write whether
her pull up was wet or dry
Date Time 1 2 Comments
When she stays dry for weeks on end I
switch her to panties
For traveling I still use Pull-ups There are
times she can even wear panties overnight as
long as she goes good before bed doesnrsquot
have too much to drink and has good seizure
control
When she starts having accidents it is a
possibility that she is losing seizure control
I hope this helps
Thank you Strider Bikes wwwstriderbikescom
WWWANGELMANTODAYCOM January February 2014
wwwStriderBikescom
STRIDER is proud to support the special needs community by providing lightweight fun inclusive bikes
for kids of all abilities
As a parent who has been
injected into disability culture
through a loved one I feel we
also have a separate and unique
Angelman Syndrome culture
Our Angelman family is
accepting supportive and non-
judgmental a culture that we
are all proud of sharing with
one another Yes we have
trials and tribulations to
overcome but we are far from
alone in this journey We build
each other up with words of
encouragement and support
Each family goes through our
own experiences
Irsquod like to take a moment to
share with you our story A
story that is essentially just
beginning because I see an
optimistic future for Rylee
where before it hasnrsquot always
looked so bright
We all know those grim
feelings upon that dreaded
diagnosis and the instant
worries and fears we faced for
our children These feelings
fuel my fire for creating every
opportunity for Rylee to
succeed in life despite the
challenges she faces I refuse
to wallow in the sadness and
grief How can I when Rylee is
the most forgiving loving and
cheerful little girl We have a
life to live and I want her to
experience it all to the greatest
extent possible
Communication is a hurdle all
of our children face and without
it our lives are extremely
limited All of our kids have
incredible and intelligent
thoughts that are trapped inside
ldquoI want the world to hear
Ryleersquos thoughts and I
know she wants to share
them with the worldrdquo
We are just breaking the tip of
the iceberg with regard to
communication but just this is
more than I could have ever
imagined in those early days of
her diagnosis One of the most
important things I did as
Ryleersquos mother was erasing the
damage that ldquodisabilityrdquo label
caused Who was anyone to
say what my child was capable
of So many people have
thought I was crazy for
dreaming so big but I had
to ignore and persevere
When Rylee was seven I
decided to homeschool her
because of my goals and
aspirations for her life that
werenrsquot being met in her
previous school setting I
wanted an AAC system that
allowed her to share her true
thoughts and did not force
her to communicate what
the adults in her life wanted
her to communicate In my
opinion it is not true
communication when
communication is forced in
an unnatural environment
I wanted Rylee to learn to
read and write as that would
broaden her world even
more in the realm of
communication and
knowledge At the time I
was not certain exactly how
to go about it but I had to
try and going about it alone
was my only option
Angels in Action Celebrating the Abilities of our Angels
By Keisha Tipton Mom to Rylee age 9
I spent the first year primarily
focusing on her first full
language AAC system known
as PODD with the help of
others in our community In
other aspects to her education
I was still stuck in that
common special education
mentality which required
Rylee to prove she was
learning instead of presuming
it up front I needed to see
those check marks that I was
taught were so important I
explicitly taught her
lowercase letter sounds
through a modified version of
Discrete Trial Training
While she was good at it this
approach was not empowering
her as a learner It was
forcing her to prove her
competence and constantly
perform what I wanted her to
perform
I have since been introduced
to a whole new perspective
that aligns perfectly with my
teaching philosophy
I want to empower Rylee to
be a thinker a doer and an
active participant in her own
life and education Since
homeschooling her and
pulling her out of public
schools I have watched the
most beautiful transformation
in Rylee going from this
passive compliant
extrinsically motivated
product of special education
to someone whom is actively
seeking new information and
The educators in charge of
teaching our children only
know what they have been
taught through their own
education which primarily
focuses on those common
behavioral approaches (I know
because Irsquom currently
obtaining my Masters in
Special Education)
The only way we can change
the face of special education
and the way our children are
taught is to lead by example
being intrinsically motivated to
learn I feel like she is seeing
herself as a learner for the first
time in her life because I shifted
my focus on the messages I was
sending to her
I scrapped all behavioral
approaches and replaced them
with appropriate tools to bridge the
gap from what her biology limits
her from doing and what she needs
to be doing I removed all
demands on her performance and
began providing authentic
experiences for her to
learn and explore with these new
tools
I am not writing this to encourage
anyone to pull their children out of
public schools and start
homeschooling It is my goal in
writing this to show that there are
other perspectives to teaching our
children and empowering them as
individuals
WWWANGELMANTODAYCOM January February 2014
Thank you
A Big Thanks to all of the contributors that help
bring you Angelman Today
Angelman Today Supporters
Sleep Safe Beds wwwsleepsafebedcom
Strider Bikes wwwstriderbikescom
All of the Angelman
and Associated
Foundations
across the globe
Contributors Dr Ronald Thibert
Sybille Kraft Bellamy
Keisha Tipton
Shari Caspert
Angela Humble Tucker
Regie and Yolanda Hamm
Betty Willemsen
Mark Mautone MA ABA
Terry Jo V Bichell -
MPH CNM and Parent
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2013 Angelman Today LLC All rights reserved worldwide
A Cure for Louie
By Terry Jo V Bichell MPH CNM (PhD candidate)
Nashville TN February 26 2012
I learned while traveling in Nigeria long
ago that the child who follows twins is
supposed to bring luck or be lucky or
carry some kind of amazing happy
blessing I remember thinking about
that luckiness when I saw Louiersquos
squished newborn face just after his
cord was cut
Louie was born in February 1999
sweet social and sleepless just like his
big sisters We didnrsquot learn until a year
later when we sought a reason for his
inability to sit up and crawl and babble
like all the other playgroup babies that
he was born without a crucial piece of
my 15th chromosome He was made
from a good sperm and a bad egg
Ironic considering that the last two of
his four older sisters had come from an
egg so lucky it split in half and made
gorgeous brilliant identical twins
The egg that made Louie had a tiny
chunk missing while the sperm was
perfectly intact The lack of that little
piece of maternal DNA specifically the
lack of one particular gene Ube3a
causes Angelman syndrome Since his
diagnosis I have dreamed of Ube3a
pondered Ube3a cursed Ube3a and
pleaded with Ube3a Why did that little
piece fall out Was it my Fourth of July
beer drinking in the month following his
conception Was it my bad behavior as
a high school and college student Was
it a karmic curse for selfish decisions as
a young adult Was it because my
parentsrsquo neighborhood in Texas had
been regularly sprayed with DDT Was
it because as good Christians assured
me unbidden our family could uniquely
handle a child with a severe disability
and we had been chosen for this task
by a higher power
It turns out that this section of the
human genome is just a weak spot in
our genetic code a chunk that is prone
to falling out or rearranging itself
These genes fall out before or during
conception without regard to age
substance abuse socio-economic
status race ethnicity religion or
sexual preference It is just bad luck
When Louie was diagnosed with
Angelman syndrome we were told
with variable sensitivity that he would
have severe epilepsy and severe
mental retardation now referred to as
an intellectual disability by ldquoPeople-
Firstrdquo terminology We were told that
he might never walk he might never
eat normally or toilet-train he would be
hyperactive sleepless and a danger to
himself during the long sleepless
nights With good care he would live a
normal lifespan and he would never
speak a word It seemed to my
husband and me to be pretty bad luck
Or was it My husband is a pediatric
heart surgeon and his patients are
babies born with only half a heart or
hearts with a missing piece or a
twisted section or a mismatched
middle Usually he fixes their
enormous cardiac bad luck and these
delicate babies come out of the ICU to
be pink and vibrant They grow up and
play sports and come back to visit and
shake his hand
I never doubted that there would also
be a way to fix the missing piece of
Louiersquos DNA
Louie was lucky to be born a mere 2
years after brilliant scientists
Art Beaudet and Joe Wagstaff had
identified maternal Ube3a as the
source of Angelman syndrome
They had also found that the normal
companion gene on the paternal
15th chromosome was turned off
as it is in everyone All of us leave
our fatherrsquos Ube3a to rest using
only our motherrsquos Ube3a to do what
needs to be done So Louie was
missing the Ube3a that I should
have given him and his fatherrsquos
Ube3a was just sitting there
perfectly good but dormant
It seemed possible plausible to be
able to get that paternal Ube3a off
the couch and into the kitchen All
we needed to do was turn it on
somehow and maybe Louie would
walk eat sleep well and speak
My husband and I used all our
medical wherewithal to help the
brilliant scientists move their ideas
about awakening the paternal gene
into clinical trials and real kids
Despite all the best efforts nothing
worked The paternal Ube3a
stayed a snooze I went back to
school at the age of 50 to join the
quest for the holy gene grail myself
as a PhD student in neuroscience
convinced that the cure lay almost
visible reachable just over the next
hump And it was In an amazing stroke of good fortune two young scientists Ed Weeber in Florida and Ben Philpot in North Carolina joined the fray and independently went to work on the problem In December 2011 right before the holidays both published papers
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
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help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Happy New Year
I am so excited to welcome in 2014 Last year was wonderful As
you know we first launched Angelman Today over the summer
and had such a great response with support from the community
and the scientific and medical professionals involved with
Angelman Syndrome
I am hopeful for the future with the ongoing research projects
funded by the hardworking foundations across the globe I am so
very happy to see the alliance of foundations in funding research
I not only wish you health and happiness in the new year but will
search high and low to find you information products and
services to help make your today easier and your future brighter
We brought you the article last edition about MAPS doctors they
are in my experience the ticket to a healthier today and an even
better tomorrow
Warm Wishes
Lizzie Sordia
Editor - in - Chief
EDITORrsquoS LETTER
WWWANGELMANTODAYCOM January February 2014
Angels in Action - Rylee age 9helliphelliphellip6
A Cure for Louiehelliphelliphelliphelliphelliphelliphelliphelliphelliphellip9
By Terry Jo V Bichell MPH CNM
Fat and the Human Brainhelliphelliphelliphelliphellip16
The History of Angelman Syndrome18
International Angelman Dayhelliphelliphelliphellip19
The Gift of Helplessnesshelliphelliphelliphelliphelliphellip21
Angels in Action ndash Lukas age 15helliphellip24
Aromatherapy for Angelshelliphelliphelliphelliphellip28
LGIT (Low Glycemic Index Treatment)
Chocolate Help Milk
by Sybille Kraft Bellamyhelliphelliphelliphelliphellip32
Interview with Dr Thiberthelliphelliphelliphelliphelliphellip33
About the Low Glycemic Treatment
Angelman Syndrome and Sleephelliphellip38
Angels Week Offhelliphelliphelliphelliphelliphelliphelliphelliphellip40
Vacation Giveaway
Valentine Raspberry Moussehelliphelliphellip44
ABA ndash Applied Behavior Analysishelliphellip46
Whatrsquos inside
Angelman and Associated
Foundations
Angelman Portugal hellip10
The Angelman Syndrome
Foundationhelliphelliphelliphelliphelliphelliphelliphelliphellip14
The Angelman Network ndash New
Zealandhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip20
THERAsurfhelliphelliphelliphelliphelliphelliphelliphelliphellip26
Angelman Syndrome Belgiumhellip27
Casa Angelman Argentinahelliphelliphellip30
Israeli Angelman Syndrome
Foundationhelliphelliphelliphelliphelliphelliphelliphelliphellip31
Angelman Syndrome
Association Spainhelliphelliphelliphelliphelliphellip35
Canadian Angelman Syndrome
Societyhelliphelliphelliphelliphelliphelliphelliphelliphelliphellip37
Nina Foundationhelliphelliphelliphelliphelliphellip43
Angels Week Off
Vacation Giveaway 44
18
40
19
Cover
Maycol Buffet
3 yrs old AS
From Argentina
46
4
Potty Training Tips By Keisha Tipton Mom to Rylee age 9
Here is Ryleersquos data form that I use
-I simply mark the date and time that I
took her to the bathroom
-Then I place a checkmark whether she
went 1 or 2 in the potty
-In the comments section I write whether
her pull up was wet or dry
Date Time 1 2 Comments
When she stays dry for weeks on end I
switch her to panties
For traveling I still use Pull-ups There are
times she can even wear panties overnight as
long as she goes good before bed doesnrsquot
have too much to drink and has good seizure
control
When she starts having accidents it is a
possibility that she is losing seizure control
I hope this helps
Thank you Strider Bikes wwwstriderbikescom
WWWANGELMANTODAYCOM January February 2014
wwwStriderBikescom
STRIDER is proud to support the special needs community by providing lightweight fun inclusive bikes
for kids of all abilities
As a parent who has been
injected into disability culture
through a loved one I feel we
also have a separate and unique
Angelman Syndrome culture
Our Angelman family is
accepting supportive and non-
judgmental a culture that we
are all proud of sharing with
one another Yes we have
trials and tribulations to
overcome but we are far from
alone in this journey We build
each other up with words of
encouragement and support
Each family goes through our
own experiences
Irsquod like to take a moment to
share with you our story A
story that is essentially just
beginning because I see an
optimistic future for Rylee
where before it hasnrsquot always
looked so bright
We all know those grim
feelings upon that dreaded
diagnosis and the instant
worries and fears we faced for
our children These feelings
fuel my fire for creating every
opportunity for Rylee to
succeed in life despite the
challenges she faces I refuse
to wallow in the sadness and
grief How can I when Rylee is
the most forgiving loving and
cheerful little girl We have a
life to live and I want her to
experience it all to the greatest
extent possible
Communication is a hurdle all
of our children face and without
it our lives are extremely
limited All of our kids have
incredible and intelligent
thoughts that are trapped inside
ldquoI want the world to hear
Ryleersquos thoughts and I
know she wants to share
them with the worldrdquo
We are just breaking the tip of
the iceberg with regard to
communication but just this is
more than I could have ever
imagined in those early days of
her diagnosis One of the most
important things I did as
Ryleersquos mother was erasing the
damage that ldquodisabilityrdquo label
caused Who was anyone to
say what my child was capable
of So many people have
thought I was crazy for
dreaming so big but I had
to ignore and persevere
When Rylee was seven I
decided to homeschool her
because of my goals and
aspirations for her life that
werenrsquot being met in her
previous school setting I
wanted an AAC system that
allowed her to share her true
thoughts and did not force
her to communicate what
the adults in her life wanted
her to communicate In my
opinion it is not true
communication when
communication is forced in
an unnatural environment
I wanted Rylee to learn to
read and write as that would
broaden her world even
more in the realm of
communication and
knowledge At the time I
was not certain exactly how
to go about it but I had to
try and going about it alone
was my only option
Angels in Action Celebrating the Abilities of our Angels
By Keisha Tipton Mom to Rylee age 9
I spent the first year primarily
focusing on her first full
language AAC system known
as PODD with the help of
others in our community In
other aspects to her education
I was still stuck in that
common special education
mentality which required
Rylee to prove she was
learning instead of presuming
it up front I needed to see
those check marks that I was
taught were so important I
explicitly taught her
lowercase letter sounds
through a modified version of
Discrete Trial Training
While she was good at it this
approach was not empowering
her as a learner It was
forcing her to prove her
competence and constantly
perform what I wanted her to
perform
I have since been introduced
to a whole new perspective
that aligns perfectly with my
teaching philosophy
I want to empower Rylee to
be a thinker a doer and an
active participant in her own
life and education Since
homeschooling her and
pulling her out of public
schools I have watched the
most beautiful transformation
in Rylee going from this
passive compliant
extrinsically motivated
product of special education
to someone whom is actively
seeking new information and
The educators in charge of
teaching our children only
know what they have been
taught through their own
education which primarily
focuses on those common
behavioral approaches (I know
because Irsquom currently
obtaining my Masters in
Special Education)
The only way we can change
the face of special education
and the way our children are
taught is to lead by example
being intrinsically motivated to
learn I feel like she is seeing
herself as a learner for the first
time in her life because I shifted
my focus on the messages I was
sending to her
I scrapped all behavioral
approaches and replaced them
with appropriate tools to bridge the
gap from what her biology limits
her from doing and what she needs
to be doing I removed all
demands on her performance and
began providing authentic
experiences for her to
learn and explore with these new
tools
I am not writing this to encourage
anyone to pull their children out of
public schools and start
homeschooling It is my goal in
writing this to show that there are
other perspectives to teaching our
children and empowering them as
individuals
WWWANGELMANTODAYCOM January February 2014
Thank you
A Big Thanks to all of the contributors that help
bring you Angelman Today
Angelman Today Supporters
Sleep Safe Beds wwwsleepsafebedcom
Strider Bikes wwwstriderbikescom
All of the Angelman
and Associated
Foundations
across the globe
Contributors Dr Ronald Thibert
Sybille Kraft Bellamy
Keisha Tipton
Shari Caspert
Angela Humble Tucker
Regie and Yolanda Hamm
Betty Willemsen
Mark Mautone MA ABA
Terry Jo V Bichell -
MPH CNM and Parent
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2013 Angelman Today LLC All rights reserved worldwide
A Cure for Louie
By Terry Jo V Bichell MPH CNM (PhD candidate)
Nashville TN February 26 2012
I learned while traveling in Nigeria long
ago that the child who follows twins is
supposed to bring luck or be lucky or
carry some kind of amazing happy
blessing I remember thinking about
that luckiness when I saw Louiersquos
squished newborn face just after his
cord was cut
Louie was born in February 1999
sweet social and sleepless just like his
big sisters We didnrsquot learn until a year
later when we sought a reason for his
inability to sit up and crawl and babble
like all the other playgroup babies that
he was born without a crucial piece of
my 15th chromosome He was made
from a good sperm and a bad egg
Ironic considering that the last two of
his four older sisters had come from an
egg so lucky it split in half and made
gorgeous brilliant identical twins
The egg that made Louie had a tiny
chunk missing while the sperm was
perfectly intact The lack of that little
piece of maternal DNA specifically the
lack of one particular gene Ube3a
causes Angelman syndrome Since his
diagnosis I have dreamed of Ube3a
pondered Ube3a cursed Ube3a and
pleaded with Ube3a Why did that little
piece fall out Was it my Fourth of July
beer drinking in the month following his
conception Was it my bad behavior as
a high school and college student Was
it a karmic curse for selfish decisions as
a young adult Was it because my
parentsrsquo neighborhood in Texas had
been regularly sprayed with DDT Was
it because as good Christians assured
me unbidden our family could uniquely
handle a child with a severe disability
and we had been chosen for this task
by a higher power
It turns out that this section of the
human genome is just a weak spot in
our genetic code a chunk that is prone
to falling out or rearranging itself
These genes fall out before or during
conception without regard to age
substance abuse socio-economic
status race ethnicity religion or
sexual preference It is just bad luck
When Louie was diagnosed with
Angelman syndrome we were told
with variable sensitivity that he would
have severe epilepsy and severe
mental retardation now referred to as
an intellectual disability by ldquoPeople-
Firstrdquo terminology We were told that
he might never walk he might never
eat normally or toilet-train he would be
hyperactive sleepless and a danger to
himself during the long sleepless
nights With good care he would live a
normal lifespan and he would never
speak a word It seemed to my
husband and me to be pretty bad luck
Or was it My husband is a pediatric
heart surgeon and his patients are
babies born with only half a heart or
hearts with a missing piece or a
twisted section or a mismatched
middle Usually he fixes their
enormous cardiac bad luck and these
delicate babies come out of the ICU to
be pink and vibrant They grow up and
play sports and come back to visit and
shake his hand
I never doubted that there would also
be a way to fix the missing piece of
Louiersquos DNA
Louie was lucky to be born a mere 2
years after brilliant scientists
Art Beaudet and Joe Wagstaff had
identified maternal Ube3a as the
source of Angelman syndrome
They had also found that the normal
companion gene on the paternal
15th chromosome was turned off
as it is in everyone All of us leave
our fatherrsquos Ube3a to rest using
only our motherrsquos Ube3a to do what
needs to be done So Louie was
missing the Ube3a that I should
have given him and his fatherrsquos
Ube3a was just sitting there
perfectly good but dormant
It seemed possible plausible to be
able to get that paternal Ube3a off
the couch and into the kitchen All
we needed to do was turn it on
somehow and maybe Louie would
walk eat sleep well and speak
My husband and I used all our
medical wherewithal to help the
brilliant scientists move their ideas
about awakening the paternal gene
into clinical trials and real kids
Despite all the best efforts nothing
worked The paternal Ube3a
stayed a snooze I went back to
school at the age of 50 to join the
quest for the holy gene grail myself
as a PhD student in neuroscience
convinced that the cure lay almost
visible reachable just over the next
hump And it was In an amazing stroke of good fortune two young scientists Ed Weeber in Florida and Ben Philpot in North Carolina joined the fray and independently went to work on the problem In December 2011 right before the holidays both published papers
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
SleepSafe IIreg - Medium Bedwith Padding and IV Accessories
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SleepSaferreg- High Bedoers the most safety protection with two removable safety rails
SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
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SleepSafe IIreg - Medium Bed in White
SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Angels in Action - Rylee age 9helliphelliphellip6
A Cure for Louiehelliphelliphelliphelliphelliphelliphelliphelliphelliphellip9
By Terry Jo V Bichell MPH CNM
Fat and the Human Brainhelliphelliphelliphelliphellip16
The History of Angelman Syndrome18
International Angelman Dayhelliphelliphelliphellip19
The Gift of Helplessnesshelliphelliphelliphelliphelliphellip21
Angels in Action ndash Lukas age 15helliphellip24
Aromatherapy for Angelshelliphelliphelliphelliphellip28
LGIT (Low Glycemic Index Treatment)
Chocolate Help Milk
by Sybille Kraft Bellamyhelliphelliphelliphelliphellip32
Interview with Dr Thiberthelliphelliphelliphelliphelliphellip33
About the Low Glycemic Treatment
Angelman Syndrome and Sleephelliphellip38
Angels Week Offhelliphelliphelliphelliphelliphelliphelliphelliphellip40
Vacation Giveaway
Valentine Raspberry Moussehelliphelliphellip44
ABA ndash Applied Behavior Analysishelliphellip46
Whatrsquos inside
Angelman and Associated
Foundations
Angelman Portugal hellip10
The Angelman Syndrome
Foundationhelliphelliphelliphelliphelliphelliphelliphelliphellip14
The Angelman Network ndash New
Zealandhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip20
THERAsurfhelliphelliphelliphelliphelliphelliphelliphelliphellip26
Angelman Syndrome Belgiumhellip27
Casa Angelman Argentinahelliphelliphellip30
Israeli Angelman Syndrome
Foundationhelliphelliphelliphelliphelliphelliphelliphelliphellip31
Angelman Syndrome
Association Spainhelliphelliphelliphelliphelliphellip35
Canadian Angelman Syndrome
Societyhelliphelliphelliphelliphelliphelliphelliphelliphelliphellip37
Nina Foundationhelliphelliphelliphelliphelliphellip43
Angels Week Off
Vacation Giveaway 44
18
40
19
Cover
Maycol Buffet
3 yrs old AS
From Argentina
46
4
Potty Training Tips By Keisha Tipton Mom to Rylee age 9
Here is Ryleersquos data form that I use
-I simply mark the date and time that I
took her to the bathroom
-Then I place a checkmark whether she
went 1 or 2 in the potty
-In the comments section I write whether
her pull up was wet or dry
Date Time 1 2 Comments
When she stays dry for weeks on end I
switch her to panties
For traveling I still use Pull-ups There are
times she can even wear panties overnight as
long as she goes good before bed doesnrsquot
have too much to drink and has good seizure
control
When she starts having accidents it is a
possibility that she is losing seizure control
I hope this helps
Thank you Strider Bikes wwwstriderbikescom
WWWANGELMANTODAYCOM January February 2014
wwwStriderBikescom
STRIDER is proud to support the special needs community by providing lightweight fun inclusive bikes
for kids of all abilities
As a parent who has been
injected into disability culture
through a loved one I feel we
also have a separate and unique
Angelman Syndrome culture
Our Angelman family is
accepting supportive and non-
judgmental a culture that we
are all proud of sharing with
one another Yes we have
trials and tribulations to
overcome but we are far from
alone in this journey We build
each other up with words of
encouragement and support
Each family goes through our
own experiences
Irsquod like to take a moment to
share with you our story A
story that is essentially just
beginning because I see an
optimistic future for Rylee
where before it hasnrsquot always
looked so bright
We all know those grim
feelings upon that dreaded
diagnosis and the instant
worries and fears we faced for
our children These feelings
fuel my fire for creating every
opportunity for Rylee to
succeed in life despite the
challenges she faces I refuse
to wallow in the sadness and
grief How can I when Rylee is
the most forgiving loving and
cheerful little girl We have a
life to live and I want her to
experience it all to the greatest
extent possible
Communication is a hurdle all
of our children face and without
it our lives are extremely
limited All of our kids have
incredible and intelligent
thoughts that are trapped inside
ldquoI want the world to hear
Ryleersquos thoughts and I
know she wants to share
them with the worldrdquo
We are just breaking the tip of
the iceberg with regard to
communication but just this is
more than I could have ever
imagined in those early days of
her diagnosis One of the most
important things I did as
Ryleersquos mother was erasing the
damage that ldquodisabilityrdquo label
caused Who was anyone to
say what my child was capable
of So many people have
thought I was crazy for
dreaming so big but I had
to ignore and persevere
When Rylee was seven I
decided to homeschool her
because of my goals and
aspirations for her life that
werenrsquot being met in her
previous school setting I
wanted an AAC system that
allowed her to share her true
thoughts and did not force
her to communicate what
the adults in her life wanted
her to communicate In my
opinion it is not true
communication when
communication is forced in
an unnatural environment
I wanted Rylee to learn to
read and write as that would
broaden her world even
more in the realm of
communication and
knowledge At the time I
was not certain exactly how
to go about it but I had to
try and going about it alone
was my only option
Angels in Action Celebrating the Abilities of our Angels
By Keisha Tipton Mom to Rylee age 9
I spent the first year primarily
focusing on her first full
language AAC system known
as PODD with the help of
others in our community In
other aspects to her education
I was still stuck in that
common special education
mentality which required
Rylee to prove she was
learning instead of presuming
it up front I needed to see
those check marks that I was
taught were so important I
explicitly taught her
lowercase letter sounds
through a modified version of
Discrete Trial Training
While she was good at it this
approach was not empowering
her as a learner It was
forcing her to prove her
competence and constantly
perform what I wanted her to
perform
I have since been introduced
to a whole new perspective
that aligns perfectly with my
teaching philosophy
I want to empower Rylee to
be a thinker a doer and an
active participant in her own
life and education Since
homeschooling her and
pulling her out of public
schools I have watched the
most beautiful transformation
in Rylee going from this
passive compliant
extrinsically motivated
product of special education
to someone whom is actively
seeking new information and
The educators in charge of
teaching our children only
know what they have been
taught through their own
education which primarily
focuses on those common
behavioral approaches (I know
because Irsquom currently
obtaining my Masters in
Special Education)
The only way we can change
the face of special education
and the way our children are
taught is to lead by example
being intrinsically motivated to
learn I feel like she is seeing
herself as a learner for the first
time in her life because I shifted
my focus on the messages I was
sending to her
I scrapped all behavioral
approaches and replaced them
with appropriate tools to bridge the
gap from what her biology limits
her from doing and what she needs
to be doing I removed all
demands on her performance and
began providing authentic
experiences for her to
learn and explore with these new
tools
I am not writing this to encourage
anyone to pull their children out of
public schools and start
homeschooling It is my goal in
writing this to show that there are
other perspectives to teaching our
children and empowering them as
individuals
WWWANGELMANTODAYCOM January February 2014
Thank you
A Big Thanks to all of the contributors that help
bring you Angelman Today
Angelman Today Supporters
Sleep Safe Beds wwwsleepsafebedcom
Strider Bikes wwwstriderbikescom
All of the Angelman
and Associated
Foundations
across the globe
Contributors Dr Ronald Thibert
Sybille Kraft Bellamy
Keisha Tipton
Shari Caspert
Angela Humble Tucker
Regie and Yolanda Hamm
Betty Willemsen
Mark Mautone MA ABA
Terry Jo V Bichell -
MPH CNM and Parent
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2013 Angelman Today LLC All rights reserved worldwide
A Cure for Louie
By Terry Jo V Bichell MPH CNM (PhD candidate)
Nashville TN February 26 2012
I learned while traveling in Nigeria long
ago that the child who follows twins is
supposed to bring luck or be lucky or
carry some kind of amazing happy
blessing I remember thinking about
that luckiness when I saw Louiersquos
squished newborn face just after his
cord was cut
Louie was born in February 1999
sweet social and sleepless just like his
big sisters We didnrsquot learn until a year
later when we sought a reason for his
inability to sit up and crawl and babble
like all the other playgroup babies that
he was born without a crucial piece of
my 15th chromosome He was made
from a good sperm and a bad egg
Ironic considering that the last two of
his four older sisters had come from an
egg so lucky it split in half and made
gorgeous brilliant identical twins
The egg that made Louie had a tiny
chunk missing while the sperm was
perfectly intact The lack of that little
piece of maternal DNA specifically the
lack of one particular gene Ube3a
causes Angelman syndrome Since his
diagnosis I have dreamed of Ube3a
pondered Ube3a cursed Ube3a and
pleaded with Ube3a Why did that little
piece fall out Was it my Fourth of July
beer drinking in the month following his
conception Was it my bad behavior as
a high school and college student Was
it a karmic curse for selfish decisions as
a young adult Was it because my
parentsrsquo neighborhood in Texas had
been regularly sprayed with DDT Was
it because as good Christians assured
me unbidden our family could uniquely
handle a child with a severe disability
and we had been chosen for this task
by a higher power
It turns out that this section of the
human genome is just a weak spot in
our genetic code a chunk that is prone
to falling out or rearranging itself
These genes fall out before or during
conception without regard to age
substance abuse socio-economic
status race ethnicity religion or
sexual preference It is just bad luck
When Louie was diagnosed with
Angelman syndrome we were told
with variable sensitivity that he would
have severe epilepsy and severe
mental retardation now referred to as
an intellectual disability by ldquoPeople-
Firstrdquo terminology We were told that
he might never walk he might never
eat normally or toilet-train he would be
hyperactive sleepless and a danger to
himself during the long sleepless
nights With good care he would live a
normal lifespan and he would never
speak a word It seemed to my
husband and me to be pretty bad luck
Or was it My husband is a pediatric
heart surgeon and his patients are
babies born with only half a heart or
hearts with a missing piece or a
twisted section or a mismatched
middle Usually he fixes their
enormous cardiac bad luck and these
delicate babies come out of the ICU to
be pink and vibrant They grow up and
play sports and come back to visit and
shake his hand
I never doubted that there would also
be a way to fix the missing piece of
Louiersquos DNA
Louie was lucky to be born a mere 2
years after brilliant scientists
Art Beaudet and Joe Wagstaff had
identified maternal Ube3a as the
source of Angelman syndrome
They had also found that the normal
companion gene on the paternal
15th chromosome was turned off
as it is in everyone All of us leave
our fatherrsquos Ube3a to rest using
only our motherrsquos Ube3a to do what
needs to be done So Louie was
missing the Ube3a that I should
have given him and his fatherrsquos
Ube3a was just sitting there
perfectly good but dormant
It seemed possible plausible to be
able to get that paternal Ube3a off
the couch and into the kitchen All
we needed to do was turn it on
somehow and maybe Louie would
walk eat sleep well and speak
My husband and I used all our
medical wherewithal to help the
brilliant scientists move their ideas
about awakening the paternal gene
into clinical trials and real kids
Despite all the best efforts nothing
worked The paternal Ube3a
stayed a snooze I went back to
school at the age of 50 to join the
quest for the holy gene grail myself
as a PhD student in neuroscience
convinced that the cure lay almost
visible reachable just over the next
hump And it was In an amazing stroke of good fortune two young scientists Ed Weeber in Florida and Ben Philpot in North Carolina joined the fray and independently went to work on the problem In December 2011 right before the holidays both published papers
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
SleepSafe IIreg - Medium Bedwith Padding and IV Accessories
SleepSafereg - Low Bed
SleepSaferreg- High Bedoers the most safety protection with two removable safety rails
SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
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SleepSafe IIreg - Medium Bed in White
SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Potty Training Tips By Keisha Tipton Mom to Rylee age 9
Here is Ryleersquos data form that I use
-I simply mark the date and time that I
took her to the bathroom
-Then I place a checkmark whether she
went 1 or 2 in the potty
-In the comments section I write whether
her pull up was wet or dry
Date Time 1 2 Comments
When she stays dry for weeks on end I
switch her to panties
For traveling I still use Pull-ups There are
times she can even wear panties overnight as
long as she goes good before bed doesnrsquot
have too much to drink and has good seizure
control
When she starts having accidents it is a
possibility that she is losing seizure control
I hope this helps
Thank you Strider Bikes wwwstriderbikescom
WWWANGELMANTODAYCOM January February 2014
wwwStriderBikescom
STRIDER is proud to support the special needs community by providing lightweight fun inclusive bikes
for kids of all abilities
As a parent who has been
injected into disability culture
through a loved one I feel we
also have a separate and unique
Angelman Syndrome culture
Our Angelman family is
accepting supportive and non-
judgmental a culture that we
are all proud of sharing with
one another Yes we have
trials and tribulations to
overcome but we are far from
alone in this journey We build
each other up with words of
encouragement and support
Each family goes through our
own experiences
Irsquod like to take a moment to
share with you our story A
story that is essentially just
beginning because I see an
optimistic future for Rylee
where before it hasnrsquot always
looked so bright
We all know those grim
feelings upon that dreaded
diagnosis and the instant
worries and fears we faced for
our children These feelings
fuel my fire for creating every
opportunity for Rylee to
succeed in life despite the
challenges she faces I refuse
to wallow in the sadness and
grief How can I when Rylee is
the most forgiving loving and
cheerful little girl We have a
life to live and I want her to
experience it all to the greatest
extent possible
Communication is a hurdle all
of our children face and without
it our lives are extremely
limited All of our kids have
incredible and intelligent
thoughts that are trapped inside
ldquoI want the world to hear
Ryleersquos thoughts and I
know she wants to share
them with the worldrdquo
We are just breaking the tip of
the iceberg with regard to
communication but just this is
more than I could have ever
imagined in those early days of
her diagnosis One of the most
important things I did as
Ryleersquos mother was erasing the
damage that ldquodisabilityrdquo label
caused Who was anyone to
say what my child was capable
of So many people have
thought I was crazy for
dreaming so big but I had
to ignore and persevere
When Rylee was seven I
decided to homeschool her
because of my goals and
aspirations for her life that
werenrsquot being met in her
previous school setting I
wanted an AAC system that
allowed her to share her true
thoughts and did not force
her to communicate what
the adults in her life wanted
her to communicate In my
opinion it is not true
communication when
communication is forced in
an unnatural environment
I wanted Rylee to learn to
read and write as that would
broaden her world even
more in the realm of
communication and
knowledge At the time I
was not certain exactly how
to go about it but I had to
try and going about it alone
was my only option
Angels in Action Celebrating the Abilities of our Angels
By Keisha Tipton Mom to Rylee age 9
I spent the first year primarily
focusing on her first full
language AAC system known
as PODD with the help of
others in our community In
other aspects to her education
I was still stuck in that
common special education
mentality which required
Rylee to prove she was
learning instead of presuming
it up front I needed to see
those check marks that I was
taught were so important I
explicitly taught her
lowercase letter sounds
through a modified version of
Discrete Trial Training
While she was good at it this
approach was not empowering
her as a learner It was
forcing her to prove her
competence and constantly
perform what I wanted her to
perform
I have since been introduced
to a whole new perspective
that aligns perfectly with my
teaching philosophy
I want to empower Rylee to
be a thinker a doer and an
active participant in her own
life and education Since
homeschooling her and
pulling her out of public
schools I have watched the
most beautiful transformation
in Rylee going from this
passive compliant
extrinsically motivated
product of special education
to someone whom is actively
seeking new information and
The educators in charge of
teaching our children only
know what they have been
taught through their own
education which primarily
focuses on those common
behavioral approaches (I know
because Irsquom currently
obtaining my Masters in
Special Education)
The only way we can change
the face of special education
and the way our children are
taught is to lead by example
being intrinsically motivated to
learn I feel like she is seeing
herself as a learner for the first
time in her life because I shifted
my focus on the messages I was
sending to her
I scrapped all behavioral
approaches and replaced them
with appropriate tools to bridge the
gap from what her biology limits
her from doing and what she needs
to be doing I removed all
demands on her performance and
began providing authentic
experiences for her to
learn and explore with these new
tools
I am not writing this to encourage
anyone to pull their children out of
public schools and start
homeschooling It is my goal in
writing this to show that there are
other perspectives to teaching our
children and empowering them as
individuals
WWWANGELMANTODAYCOM January February 2014
Thank you
A Big Thanks to all of the contributors that help
bring you Angelman Today
Angelman Today Supporters
Sleep Safe Beds wwwsleepsafebedcom
Strider Bikes wwwstriderbikescom
All of the Angelman
and Associated
Foundations
across the globe
Contributors Dr Ronald Thibert
Sybille Kraft Bellamy
Keisha Tipton
Shari Caspert
Angela Humble Tucker
Regie and Yolanda Hamm
Betty Willemsen
Mark Mautone MA ABA
Terry Jo V Bichell -
MPH CNM and Parent
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2013 Angelman Today LLC All rights reserved worldwide
A Cure for Louie
By Terry Jo V Bichell MPH CNM (PhD candidate)
Nashville TN February 26 2012
I learned while traveling in Nigeria long
ago that the child who follows twins is
supposed to bring luck or be lucky or
carry some kind of amazing happy
blessing I remember thinking about
that luckiness when I saw Louiersquos
squished newborn face just after his
cord was cut
Louie was born in February 1999
sweet social and sleepless just like his
big sisters We didnrsquot learn until a year
later when we sought a reason for his
inability to sit up and crawl and babble
like all the other playgroup babies that
he was born without a crucial piece of
my 15th chromosome He was made
from a good sperm and a bad egg
Ironic considering that the last two of
his four older sisters had come from an
egg so lucky it split in half and made
gorgeous brilliant identical twins
The egg that made Louie had a tiny
chunk missing while the sperm was
perfectly intact The lack of that little
piece of maternal DNA specifically the
lack of one particular gene Ube3a
causes Angelman syndrome Since his
diagnosis I have dreamed of Ube3a
pondered Ube3a cursed Ube3a and
pleaded with Ube3a Why did that little
piece fall out Was it my Fourth of July
beer drinking in the month following his
conception Was it my bad behavior as
a high school and college student Was
it a karmic curse for selfish decisions as
a young adult Was it because my
parentsrsquo neighborhood in Texas had
been regularly sprayed with DDT Was
it because as good Christians assured
me unbidden our family could uniquely
handle a child with a severe disability
and we had been chosen for this task
by a higher power
It turns out that this section of the
human genome is just a weak spot in
our genetic code a chunk that is prone
to falling out or rearranging itself
These genes fall out before or during
conception without regard to age
substance abuse socio-economic
status race ethnicity religion or
sexual preference It is just bad luck
When Louie was diagnosed with
Angelman syndrome we were told
with variable sensitivity that he would
have severe epilepsy and severe
mental retardation now referred to as
an intellectual disability by ldquoPeople-
Firstrdquo terminology We were told that
he might never walk he might never
eat normally or toilet-train he would be
hyperactive sleepless and a danger to
himself during the long sleepless
nights With good care he would live a
normal lifespan and he would never
speak a word It seemed to my
husband and me to be pretty bad luck
Or was it My husband is a pediatric
heart surgeon and his patients are
babies born with only half a heart or
hearts with a missing piece or a
twisted section or a mismatched
middle Usually he fixes their
enormous cardiac bad luck and these
delicate babies come out of the ICU to
be pink and vibrant They grow up and
play sports and come back to visit and
shake his hand
I never doubted that there would also
be a way to fix the missing piece of
Louiersquos DNA
Louie was lucky to be born a mere 2
years after brilliant scientists
Art Beaudet and Joe Wagstaff had
identified maternal Ube3a as the
source of Angelman syndrome
They had also found that the normal
companion gene on the paternal
15th chromosome was turned off
as it is in everyone All of us leave
our fatherrsquos Ube3a to rest using
only our motherrsquos Ube3a to do what
needs to be done So Louie was
missing the Ube3a that I should
have given him and his fatherrsquos
Ube3a was just sitting there
perfectly good but dormant
It seemed possible plausible to be
able to get that paternal Ube3a off
the couch and into the kitchen All
we needed to do was turn it on
somehow and maybe Louie would
walk eat sleep well and speak
My husband and I used all our
medical wherewithal to help the
brilliant scientists move their ideas
about awakening the paternal gene
into clinical trials and real kids
Despite all the best efforts nothing
worked The paternal Ube3a
stayed a snooze I went back to
school at the age of 50 to join the
quest for the holy gene grail myself
as a PhD student in neuroscience
convinced that the cure lay almost
visible reachable just over the next
hump And it was In an amazing stroke of good fortune two young scientists Ed Weeber in Florida and Ben Philpot in North Carolina joined the fray and independently went to work on the problem In December 2011 right before the holidays both published papers
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
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SleepSafe IIreg - Medium Bed in Multi-Color
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SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
wwwStriderBikescom
STRIDER is proud to support the special needs community by providing lightweight fun inclusive bikes
for kids of all abilities
As a parent who has been
injected into disability culture
through a loved one I feel we
also have a separate and unique
Angelman Syndrome culture
Our Angelman family is
accepting supportive and non-
judgmental a culture that we
are all proud of sharing with
one another Yes we have
trials and tribulations to
overcome but we are far from
alone in this journey We build
each other up with words of
encouragement and support
Each family goes through our
own experiences
Irsquod like to take a moment to
share with you our story A
story that is essentially just
beginning because I see an
optimistic future for Rylee
where before it hasnrsquot always
looked so bright
We all know those grim
feelings upon that dreaded
diagnosis and the instant
worries and fears we faced for
our children These feelings
fuel my fire for creating every
opportunity for Rylee to
succeed in life despite the
challenges she faces I refuse
to wallow in the sadness and
grief How can I when Rylee is
the most forgiving loving and
cheerful little girl We have a
life to live and I want her to
experience it all to the greatest
extent possible
Communication is a hurdle all
of our children face and without
it our lives are extremely
limited All of our kids have
incredible and intelligent
thoughts that are trapped inside
ldquoI want the world to hear
Ryleersquos thoughts and I
know she wants to share
them with the worldrdquo
We are just breaking the tip of
the iceberg with regard to
communication but just this is
more than I could have ever
imagined in those early days of
her diagnosis One of the most
important things I did as
Ryleersquos mother was erasing the
damage that ldquodisabilityrdquo label
caused Who was anyone to
say what my child was capable
of So many people have
thought I was crazy for
dreaming so big but I had
to ignore and persevere
When Rylee was seven I
decided to homeschool her
because of my goals and
aspirations for her life that
werenrsquot being met in her
previous school setting I
wanted an AAC system that
allowed her to share her true
thoughts and did not force
her to communicate what
the adults in her life wanted
her to communicate In my
opinion it is not true
communication when
communication is forced in
an unnatural environment
I wanted Rylee to learn to
read and write as that would
broaden her world even
more in the realm of
communication and
knowledge At the time I
was not certain exactly how
to go about it but I had to
try and going about it alone
was my only option
Angels in Action Celebrating the Abilities of our Angels
By Keisha Tipton Mom to Rylee age 9
I spent the first year primarily
focusing on her first full
language AAC system known
as PODD with the help of
others in our community In
other aspects to her education
I was still stuck in that
common special education
mentality which required
Rylee to prove she was
learning instead of presuming
it up front I needed to see
those check marks that I was
taught were so important I
explicitly taught her
lowercase letter sounds
through a modified version of
Discrete Trial Training
While she was good at it this
approach was not empowering
her as a learner It was
forcing her to prove her
competence and constantly
perform what I wanted her to
perform
I have since been introduced
to a whole new perspective
that aligns perfectly with my
teaching philosophy
I want to empower Rylee to
be a thinker a doer and an
active participant in her own
life and education Since
homeschooling her and
pulling her out of public
schools I have watched the
most beautiful transformation
in Rylee going from this
passive compliant
extrinsically motivated
product of special education
to someone whom is actively
seeking new information and
The educators in charge of
teaching our children only
know what they have been
taught through their own
education which primarily
focuses on those common
behavioral approaches (I know
because Irsquom currently
obtaining my Masters in
Special Education)
The only way we can change
the face of special education
and the way our children are
taught is to lead by example
being intrinsically motivated to
learn I feel like she is seeing
herself as a learner for the first
time in her life because I shifted
my focus on the messages I was
sending to her
I scrapped all behavioral
approaches and replaced them
with appropriate tools to bridge the
gap from what her biology limits
her from doing and what she needs
to be doing I removed all
demands on her performance and
began providing authentic
experiences for her to
learn and explore with these new
tools
I am not writing this to encourage
anyone to pull their children out of
public schools and start
homeschooling It is my goal in
writing this to show that there are
other perspectives to teaching our
children and empowering them as
individuals
WWWANGELMANTODAYCOM January February 2014
Thank you
A Big Thanks to all of the contributors that help
bring you Angelman Today
Angelman Today Supporters
Sleep Safe Beds wwwsleepsafebedcom
Strider Bikes wwwstriderbikescom
All of the Angelman
and Associated
Foundations
across the globe
Contributors Dr Ronald Thibert
Sybille Kraft Bellamy
Keisha Tipton
Shari Caspert
Angela Humble Tucker
Regie and Yolanda Hamm
Betty Willemsen
Mark Mautone MA ABA
Terry Jo V Bichell -
MPH CNM and Parent
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2013 Angelman Today LLC All rights reserved worldwide
A Cure for Louie
By Terry Jo V Bichell MPH CNM (PhD candidate)
Nashville TN February 26 2012
I learned while traveling in Nigeria long
ago that the child who follows twins is
supposed to bring luck or be lucky or
carry some kind of amazing happy
blessing I remember thinking about
that luckiness when I saw Louiersquos
squished newborn face just after his
cord was cut
Louie was born in February 1999
sweet social and sleepless just like his
big sisters We didnrsquot learn until a year
later when we sought a reason for his
inability to sit up and crawl and babble
like all the other playgroup babies that
he was born without a crucial piece of
my 15th chromosome He was made
from a good sperm and a bad egg
Ironic considering that the last two of
his four older sisters had come from an
egg so lucky it split in half and made
gorgeous brilliant identical twins
The egg that made Louie had a tiny
chunk missing while the sperm was
perfectly intact The lack of that little
piece of maternal DNA specifically the
lack of one particular gene Ube3a
causes Angelman syndrome Since his
diagnosis I have dreamed of Ube3a
pondered Ube3a cursed Ube3a and
pleaded with Ube3a Why did that little
piece fall out Was it my Fourth of July
beer drinking in the month following his
conception Was it my bad behavior as
a high school and college student Was
it a karmic curse for selfish decisions as
a young adult Was it because my
parentsrsquo neighborhood in Texas had
been regularly sprayed with DDT Was
it because as good Christians assured
me unbidden our family could uniquely
handle a child with a severe disability
and we had been chosen for this task
by a higher power
It turns out that this section of the
human genome is just a weak spot in
our genetic code a chunk that is prone
to falling out or rearranging itself
These genes fall out before or during
conception without regard to age
substance abuse socio-economic
status race ethnicity religion or
sexual preference It is just bad luck
When Louie was diagnosed with
Angelman syndrome we were told
with variable sensitivity that he would
have severe epilepsy and severe
mental retardation now referred to as
an intellectual disability by ldquoPeople-
Firstrdquo terminology We were told that
he might never walk he might never
eat normally or toilet-train he would be
hyperactive sleepless and a danger to
himself during the long sleepless
nights With good care he would live a
normal lifespan and he would never
speak a word It seemed to my
husband and me to be pretty bad luck
Or was it My husband is a pediatric
heart surgeon and his patients are
babies born with only half a heart or
hearts with a missing piece or a
twisted section or a mismatched
middle Usually he fixes their
enormous cardiac bad luck and these
delicate babies come out of the ICU to
be pink and vibrant They grow up and
play sports and come back to visit and
shake his hand
I never doubted that there would also
be a way to fix the missing piece of
Louiersquos DNA
Louie was lucky to be born a mere 2
years after brilliant scientists
Art Beaudet and Joe Wagstaff had
identified maternal Ube3a as the
source of Angelman syndrome
They had also found that the normal
companion gene on the paternal
15th chromosome was turned off
as it is in everyone All of us leave
our fatherrsquos Ube3a to rest using
only our motherrsquos Ube3a to do what
needs to be done So Louie was
missing the Ube3a that I should
have given him and his fatherrsquos
Ube3a was just sitting there
perfectly good but dormant
It seemed possible plausible to be
able to get that paternal Ube3a off
the couch and into the kitchen All
we needed to do was turn it on
somehow and maybe Louie would
walk eat sleep well and speak
My husband and I used all our
medical wherewithal to help the
brilliant scientists move their ideas
about awakening the paternal gene
into clinical trials and real kids
Despite all the best efforts nothing
worked The paternal Ube3a
stayed a snooze I went back to
school at the age of 50 to join the
quest for the holy gene grail myself
as a PhD student in neuroscience
convinced that the cure lay almost
visible reachable just over the next
hump And it was In an amazing stroke of good fortune two young scientists Ed Weeber in Florida and Ben Philpot in North Carolina joined the fray and independently went to work on the problem In December 2011 right before the holidays both published papers
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
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SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
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SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
As a parent who has been
injected into disability culture
through a loved one I feel we
also have a separate and unique
Angelman Syndrome culture
Our Angelman family is
accepting supportive and non-
judgmental a culture that we
are all proud of sharing with
one another Yes we have
trials and tribulations to
overcome but we are far from
alone in this journey We build
each other up with words of
encouragement and support
Each family goes through our
own experiences
Irsquod like to take a moment to
share with you our story A
story that is essentially just
beginning because I see an
optimistic future for Rylee
where before it hasnrsquot always
looked so bright
We all know those grim
feelings upon that dreaded
diagnosis and the instant
worries and fears we faced for
our children These feelings
fuel my fire for creating every
opportunity for Rylee to
succeed in life despite the
challenges she faces I refuse
to wallow in the sadness and
grief How can I when Rylee is
the most forgiving loving and
cheerful little girl We have a
life to live and I want her to
experience it all to the greatest
extent possible
Communication is a hurdle all
of our children face and without
it our lives are extremely
limited All of our kids have
incredible and intelligent
thoughts that are trapped inside
ldquoI want the world to hear
Ryleersquos thoughts and I
know she wants to share
them with the worldrdquo
We are just breaking the tip of
the iceberg with regard to
communication but just this is
more than I could have ever
imagined in those early days of
her diagnosis One of the most
important things I did as
Ryleersquos mother was erasing the
damage that ldquodisabilityrdquo label
caused Who was anyone to
say what my child was capable
of So many people have
thought I was crazy for
dreaming so big but I had
to ignore and persevere
When Rylee was seven I
decided to homeschool her
because of my goals and
aspirations for her life that
werenrsquot being met in her
previous school setting I
wanted an AAC system that
allowed her to share her true
thoughts and did not force
her to communicate what
the adults in her life wanted
her to communicate In my
opinion it is not true
communication when
communication is forced in
an unnatural environment
I wanted Rylee to learn to
read and write as that would
broaden her world even
more in the realm of
communication and
knowledge At the time I
was not certain exactly how
to go about it but I had to
try and going about it alone
was my only option
Angels in Action Celebrating the Abilities of our Angels
By Keisha Tipton Mom to Rylee age 9
I spent the first year primarily
focusing on her first full
language AAC system known
as PODD with the help of
others in our community In
other aspects to her education
I was still stuck in that
common special education
mentality which required
Rylee to prove she was
learning instead of presuming
it up front I needed to see
those check marks that I was
taught were so important I
explicitly taught her
lowercase letter sounds
through a modified version of
Discrete Trial Training
While she was good at it this
approach was not empowering
her as a learner It was
forcing her to prove her
competence and constantly
perform what I wanted her to
perform
I have since been introduced
to a whole new perspective
that aligns perfectly with my
teaching philosophy
I want to empower Rylee to
be a thinker a doer and an
active participant in her own
life and education Since
homeschooling her and
pulling her out of public
schools I have watched the
most beautiful transformation
in Rylee going from this
passive compliant
extrinsically motivated
product of special education
to someone whom is actively
seeking new information and
The educators in charge of
teaching our children only
know what they have been
taught through their own
education which primarily
focuses on those common
behavioral approaches (I know
because Irsquom currently
obtaining my Masters in
Special Education)
The only way we can change
the face of special education
and the way our children are
taught is to lead by example
being intrinsically motivated to
learn I feel like she is seeing
herself as a learner for the first
time in her life because I shifted
my focus on the messages I was
sending to her
I scrapped all behavioral
approaches and replaced them
with appropriate tools to bridge the
gap from what her biology limits
her from doing and what she needs
to be doing I removed all
demands on her performance and
began providing authentic
experiences for her to
learn and explore with these new
tools
I am not writing this to encourage
anyone to pull their children out of
public schools and start
homeschooling It is my goal in
writing this to show that there are
other perspectives to teaching our
children and empowering them as
individuals
WWWANGELMANTODAYCOM January February 2014
Thank you
A Big Thanks to all of the contributors that help
bring you Angelman Today
Angelman Today Supporters
Sleep Safe Beds wwwsleepsafebedcom
Strider Bikes wwwstriderbikescom
All of the Angelman
and Associated
Foundations
across the globe
Contributors Dr Ronald Thibert
Sybille Kraft Bellamy
Keisha Tipton
Shari Caspert
Angela Humble Tucker
Regie and Yolanda Hamm
Betty Willemsen
Mark Mautone MA ABA
Terry Jo V Bichell -
MPH CNM and Parent
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2013 Angelman Today LLC All rights reserved worldwide
A Cure for Louie
By Terry Jo V Bichell MPH CNM (PhD candidate)
Nashville TN February 26 2012
I learned while traveling in Nigeria long
ago that the child who follows twins is
supposed to bring luck or be lucky or
carry some kind of amazing happy
blessing I remember thinking about
that luckiness when I saw Louiersquos
squished newborn face just after his
cord was cut
Louie was born in February 1999
sweet social and sleepless just like his
big sisters We didnrsquot learn until a year
later when we sought a reason for his
inability to sit up and crawl and babble
like all the other playgroup babies that
he was born without a crucial piece of
my 15th chromosome He was made
from a good sperm and a bad egg
Ironic considering that the last two of
his four older sisters had come from an
egg so lucky it split in half and made
gorgeous brilliant identical twins
The egg that made Louie had a tiny
chunk missing while the sperm was
perfectly intact The lack of that little
piece of maternal DNA specifically the
lack of one particular gene Ube3a
causes Angelman syndrome Since his
diagnosis I have dreamed of Ube3a
pondered Ube3a cursed Ube3a and
pleaded with Ube3a Why did that little
piece fall out Was it my Fourth of July
beer drinking in the month following his
conception Was it my bad behavior as
a high school and college student Was
it a karmic curse for selfish decisions as
a young adult Was it because my
parentsrsquo neighborhood in Texas had
been regularly sprayed with DDT Was
it because as good Christians assured
me unbidden our family could uniquely
handle a child with a severe disability
and we had been chosen for this task
by a higher power
It turns out that this section of the
human genome is just a weak spot in
our genetic code a chunk that is prone
to falling out or rearranging itself
These genes fall out before or during
conception without regard to age
substance abuse socio-economic
status race ethnicity religion or
sexual preference It is just bad luck
When Louie was diagnosed with
Angelman syndrome we were told
with variable sensitivity that he would
have severe epilepsy and severe
mental retardation now referred to as
an intellectual disability by ldquoPeople-
Firstrdquo terminology We were told that
he might never walk he might never
eat normally or toilet-train he would be
hyperactive sleepless and a danger to
himself during the long sleepless
nights With good care he would live a
normal lifespan and he would never
speak a word It seemed to my
husband and me to be pretty bad luck
Or was it My husband is a pediatric
heart surgeon and his patients are
babies born with only half a heart or
hearts with a missing piece or a
twisted section or a mismatched
middle Usually he fixes their
enormous cardiac bad luck and these
delicate babies come out of the ICU to
be pink and vibrant They grow up and
play sports and come back to visit and
shake his hand
I never doubted that there would also
be a way to fix the missing piece of
Louiersquos DNA
Louie was lucky to be born a mere 2
years after brilliant scientists
Art Beaudet and Joe Wagstaff had
identified maternal Ube3a as the
source of Angelman syndrome
They had also found that the normal
companion gene on the paternal
15th chromosome was turned off
as it is in everyone All of us leave
our fatherrsquos Ube3a to rest using
only our motherrsquos Ube3a to do what
needs to be done So Louie was
missing the Ube3a that I should
have given him and his fatherrsquos
Ube3a was just sitting there
perfectly good but dormant
It seemed possible plausible to be
able to get that paternal Ube3a off
the couch and into the kitchen All
we needed to do was turn it on
somehow and maybe Louie would
walk eat sleep well and speak
My husband and I used all our
medical wherewithal to help the
brilliant scientists move their ideas
about awakening the paternal gene
into clinical trials and real kids
Despite all the best efforts nothing
worked The paternal Ube3a
stayed a snooze I went back to
school at the age of 50 to join the
quest for the holy gene grail myself
as a PhD student in neuroscience
convinced that the cure lay almost
visible reachable just over the next
hump And it was In an amazing stroke of good fortune two young scientists Ed Weeber in Florida and Ben Philpot in North Carolina joined the fray and independently went to work on the problem In December 2011 right before the holidays both published papers
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
SleepSafe IIreg - Medium Bedwith Padding and IV Accessories
SleepSafereg - Low Bed
SleepSaferreg- High Bedoers the most safety protection with two removable safety rails
SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
SleepSaferreg- High Bedwith one safety rail removedand one safety rail rotated down
SleepSafe IIreg - Medium Bed in White
SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
I spent the first year primarily
focusing on her first full
language AAC system known
as PODD with the help of
others in our community In
other aspects to her education
I was still stuck in that
common special education
mentality which required
Rylee to prove she was
learning instead of presuming
it up front I needed to see
those check marks that I was
taught were so important I
explicitly taught her
lowercase letter sounds
through a modified version of
Discrete Trial Training
While she was good at it this
approach was not empowering
her as a learner It was
forcing her to prove her
competence and constantly
perform what I wanted her to
perform
I have since been introduced
to a whole new perspective
that aligns perfectly with my
teaching philosophy
I want to empower Rylee to
be a thinker a doer and an
active participant in her own
life and education Since
homeschooling her and
pulling her out of public
schools I have watched the
most beautiful transformation
in Rylee going from this
passive compliant
extrinsically motivated
product of special education
to someone whom is actively
seeking new information and
The educators in charge of
teaching our children only
know what they have been
taught through their own
education which primarily
focuses on those common
behavioral approaches (I know
because Irsquom currently
obtaining my Masters in
Special Education)
The only way we can change
the face of special education
and the way our children are
taught is to lead by example
being intrinsically motivated to
learn I feel like she is seeing
herself as a learner for the first
time in her life because I shifted
my focus on the messages I was
sending to her
I scrapped all behavioral
approaches and replaced them
with appropriate tools to bridge the
gap from what her biology limits
her from doing and what she needs
to be doing I removed all
demands on her performance and
began providing authentic
experiences for her to
learn and explore with these new
tools
I am not writing this to encourage
anyone to pull their children out of
public schools and start
homeschooling It is my goal in
writing this to show that there are
other perspectives to teaching our
children and empowering them as
individuals
WWWANGELMANTODAYCOM January February 2014
Thank you
A Big Thanks to all of the contributors that help
bring you Angelman Today
Angelman Today Supporters
Sleep Safe Beds wwwsleepsafebedcom
Strider Bikes wwwstriderbikescom
All of the Angelman
and Associated
Foundations
across the globe
Contributors Dr Ronald Thibert
Sybille Kraft Bellamy
Keisha Tipton
Shari Caspert
Angela Humble Tucker
Regie and Yolanda Hamm
Betty Willemsen
Mark Mautone MA ABA
Terry Jo V Bichell -
MPH CNM and Parent
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2013 Angelman Today LLC All rights reserved worldwide
A Cure for Louie
By Terry Jo V Bichell MPH CNM (PhD candidate)
Nashville TN February 26 2012
I learned while traveling in Nigeria long
ago that the child who follows twins is
supposed to bring luck or be lucky or
carry some kind of amazing happy
blessing I remember thinking about
that luckiness when I saw Louiersquos
squished newborn face just after his
cord was cut
Louie was born in February 1999
sweet social and sleepless just like his
big sisters We didnrsquot learn until a year
later when we sought a reason for his
inability to sit up and crawl and babble
like all the other playgroup babies that
he was born without a crucial piece of
my 15th chromosome He was made
from a good sperm and a bad egg
Ironic considering that the last two of
his four older sisters had come from an
egg so lucky it split in half and made
gorgeous brilliant identical twins
The egg that made Louie had a tiny
chunk missing while the sperm was
perfectly intact The lack of that little
piece of maternal DNA specifically the
lack of one particular gene Ube3a
causes Angelman syndrome Since his
diagnosis I have dreamed of Ube3a
pondered Ube3a cursed Ube3a and
pleaded with Ube3a Why did that little
piece fall out Was it my Fourth of July
beer drinking in the month following his
conception Was it my bad behavior as
a high school and college student Was
it a karmic curse for selfish decisions as
a young adult Was it because my
parentsrsquo neighborhood in Texas had
been regularly sprayed with DDT Was
it because as good Christians assured
me unbidden our family could uniquely
handle a child with a severe disability
and we had been chosen for this task
by a higher power
It turns out that this section of the
human genome is just a weak spot in
our genetic code a chunk that is prone
to falling out or rearranging itself
These genes fall out before or during
conception without regard to age
substance abuse socio-economic
status race ethnicity religion or
sexual preference It is just bad luck
When Louie was diagnosed with
Angelman syndrome we were told
with variable sensitivity that he would
have severe epilepsy and severe
mental retardation now referred to as
an intellectual disability by ldquoPeople-
Firstrdquo terminology We were told that
he might never walk he might never
eat normally or toilet-train he would be
hyperactive sleepless and a danger to
himself during the long sleepless
nights With good care he would live a
normal lifespan and he would never
speak a word It seemed to my
husband and me to be pretty bad luck
Or was it My husband is a pediatric
heart surgeon and his patients are
babies born with only half a heart or
hearts with a missing piece or a
twisted section or a mismatched
middle Usually he fixes their
enormous cardiac bad luck and these
delicate babies come out of the ICU to
be pink and vibrant They grow up and
play sports and come back to visit and
shake his hand
I never doubted that there would also
be a way to fix the missing piece of
Louiersquos DNA
Louie was lucky to be born a mere 2
years after brilliant scientists
Art Beaudet and Joe Wagstaff had
identified maternal Ube3a as the
source of Angelman syndrome
They had also found that the normal
companion gene on the paternal
15th chromosome was turned off
as it is in everyone All of us leave
our fatherrsquos Ube3a to rest using
only our motherrsquos Ube3a to do what
needs to be done So Louie was
missing the Ube3a that I should
have given him and his fatherrsquos
Ube3a was just sitting there
perfectly good but dormant
It seemed possible plausible to be
able to get that paternal Ube3a off
the couch and into the kitchen All
we needed to do was turn it on
somehow and maybe Louie would
walk eat sleep well and speak
My husband and I used all our
medical wherewithal to help the
brilliant scientists move their ideas
about awakening the paternal gene
into clinical trials and real kids
Despite all the best efforts nothing
worked The paternal Ube3a
stayed a snooze I went back to
school at the age of 50 to join the
quest for the holy gene grail myself
as a PhD student in neuroscience
convinced that the cure lay almost
visible reachable just over the next
hump And it was In an amazing stroke of good fortune two young scientists Ed Weeber in Florida and Ben Philpot in North Carolina joined the fray and independently went to work on the problem In December 2011 right before the holidays both published papers
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
SleepSafe IIreg - Medium Bedwith Padding and IV Accessories
SleepSafereg - Low Bed
SleepSaferreg- High Bedoers the most safety protection with two removable safety rails
SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
SleepSaferreg- High Bedwith one safety rail removedand one safety rail rotated down
SleepSafe IIreg - Medium Bed in White
SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Thank you
A Big Thanks to all of the contributors that help
bring you Angelman Today
Angelman Today Supporters
Sleep Safe Beds wwwsleepsafebedcom
Strider Bikes wwwstriderbikescom
All of the Angelman
and Associated
Foundations
across the globe
Contributors Dr Ronald Thibert
Sybille Kraft Bellamy
Keisha Tipton
Shari Caspert
Angela Humble Tucker
Regie and Yolanda Hamm
Betty Willemsen
Mark Mautone MA ABA
Terry Jo V Bichell -
MPH CNM and Parent
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2013 Angelman Today LLC All rights reserved worldwide
A Cure for Louie
By Terry Jo V Bichell MPH CNM (PhD candidate)
Nashville TN February 26 2012
I learned while traveling in Nigeria long
ago that the child who follows twins is
supposed to bring luck or be lucky or
carry some kind of amazing happy
blessing I remember thinking about
that luckiness when I saw Louiersquos
squished newborn face just after his
cord was cut
Louie was born in February 1999
sweet social and sleepless just like his
big sisters We didnrsquot learn until a year
later when we sought a reason for his
inability to sit up and crawl and babble
like all the other playgroup babies that
he was born without a crucial piece of
my 15th chromosome He was made
from a good sperm and a bad egg
Ironic considering that the last two of
his four older sisters had come from an
egg so lucky it split in half and made
gorgeous brilliant identical twins
The egg that made Louie had a tiny
chunk missing while the sperm was
perfectly intact The lack of that little
piece of maternal DNA specifically the
lack of one particular gene Ube3a
causes Angelman syndrome Since his
diagnosis I have dreamed of Ube3a
pondered Ube3a cursed Ube3a and
pleaded with Ube3a Why did that little
piece fall out Was it my Fourth of July
beer drinking in the month following his
conception Was it my bad behavior as
a high school and college student Was
it a karmic curse for selfish decisions as
a young adult Was it because my
parentsrsquo neighborhood in Texas had
been regularly sprayed with DDT Was
it because as good Christians assured
me unbidden our family could uniquely
handle a child with a severe disability
and we had been chosen for this task
by a higher power
It turns out that this section of the
human genome is just a weak spot in
our genetic code a chunk that is prone
to falling out or rearranging itself
These genes fall out before or during
conception without regard to age
substance abuse socio-economic
status race ethnicity religion or
sexual preference It is just bad luck
When Louie was diagnosed with
Angelman syndrome we were told
with variable sensitivity that he would
have severe epilepsy and severe
mental retardation now referred to as
an intellectual disability by ldquoPeople-
Firstrdquo terminology We were told that
he might never walk he might never
eat normally or toilet-train he would be
hyperactive sleepless and a danger to
himself during the long sleepless
nights With good care he would live a
normal lifespan and he would never
speak a word It seemed to my
husband and me to be pretty bad luck
Or was it My husband is a pediatric
heart surgeon and his patients are
babies born with only half a heart or
hearts with a missing piece or a
twisted section or a mismatched
middle Usually he fixes their
enormous cardiac bad luck and these
delicate babies come out of the ICU to
be pink and vibrant They grow up and
play sports and come back to visit and
shake his hand
I never doubted that there would also
be a way to fix the missing piece of
Louiersquos DNA
Louie was lucky to be born a mere 2
years after brilliant scientists
Art Beaudet and Joe Wagstaff had
identified maternal Ube3a as the
source of Angelman syndrome
They had also found that the normal
companion gene on the paternal
15th chromosome was turned off
as it is in everyone All of us leave
our fatherrsquos Ube3a to rest using
only our motherrsquos Ube3a to do what
needs to be done So Louie was
missing the Ube3a that I should
have given him and his fatherrsquos
Ube3a was just sitting there
perfectly good but dormant
It seemed possible plausible to be
able to get that paternal Ube3a off
the couch and into the kitchen All
we needed to do was turn it on
somehow and maybe Louie would
walk eat sleep well and speak
My husband and I used all our
medical wherewithal to help the
brilliant scientists move their ideas
about awakening the paternal gene
into clinical trials and real kids
Despite all the best efforts nothing
worked The paternal Ube3a
stayed a snooze I went back to
school at the age of 50 to join the
quest for the holy gene grail myself
as a PhD student in neuroscience
convinced that the cure lay almost
visible reachable just over the next
hump And it was In an amazing stroke of good fortune two young scientists Ed Weeber in Florida and Ben Philpot in North Carolina joined the fray and independently went to work on the problem In December 2011 right before the holidays both published papers
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
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SleepSafereg - Low Bed
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SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
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SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
A Cure for Louie
By Terry Jo V Bichell MPH CNM (PhD candidate)
Nashville TN February 26 2012
I learned while traveling in Nigeria long
ago that the child who follows twins is
supposed to bring luck or be lucky or
carry some kind of amazing happy
blessing I remember thinking about
that luckiness when I saw Louiersquos
squished newborn face just after his
cord was cut
Louie was born in February 1999
sweet social and sleepless just like his
big sisters We didnrsquot learn until a year
later when we sought a reason for his
inability to sit up and crawl and babble
like all the other playgroup babies that
he was born without a crucial piece of
my 15th chromosome He was made
from a good sperm and a bad egg
Ironic considering that the last two of
his four older sisters had come from an
egg so lucky it split in half and made
gorgeous brilliant identical twins
The egg that made Louie had a tiny
chunk missing while the sperm was
perfectly intact The lack of that little
piece of maternal DNA specifically the
lack of one particular gene Ube3a
causes Angelman syndrome Since his
diagnosis I have dreamed of Ube3a
pondered Ube3a cursed Ube3a and
pleaded with Ube3a Why did that little
piece fall out Was it my Fourth of July
beer drinking in the month following his
conception Was it my bad behavior as
a high school and college student Was
it a karmic curse for selfish decisions as
a young adult Was it because my
parentsrsquo neighborhood in Texas had
been regularly sprayed with DDT Was
it because as good Christians assured
me unbidden our family could uniquely
handle a child with a severe disability
and we had been chosen for this task
by a higher power
It turns out that this section of the
human genome is just a weak spot in
our genetic code a chunk that is prone
to falling out or rearranging itself
These genes fall out before or during
conception without regard to age
substance abuse socio-economic
status race ethnicity religion or
sexual preference It is just bad luck
When Louie was diagnosed with
Angelman syndrome we were told
with variable sensitivity that he would
have severe epilepsy and severe
mental retardation now referred to as
an intellectual disability by ldquoPeople-
Firstrdquo terminology We were told that
he might never walk he might never
eat normally or toilet-train he would be
hyperactive sleepless and a danger to
himself during the long sleepless
nights With good care he would live a
normal lifespan and he would never
speak a word It seemed to my
husband and me to be pretty bad luck
Or was it My husband is a pediatric
heart surgeon and his patients are
babies born with only half a heart or
hearts with a missing piece or a
twisted section or a mismatched
middle Usually he fixes their
enormous cardiac bad luck and these
delicate babies come out of the ICU to
be pink and vibrant They grow up and
play sports and come back to visit and
shake his hand
I never doubted that there would also
be a way to fix the missing piece of
Louiersquos DNA
Louie was lucky to be born a mere 2
years after brilliant scientists
Art Beaudet and Joe Wagstaff had
identified maternal Ube3a as the
source of Angelman syndrome
They had also found that the normal
companion gene on the paternal
15th chromosome was turned off
as it is in everyone All of us leave
our fatherrsquos Ube3a to rest using
only our motherrsquos Ube3a to do what
needs to be done So Louie was
missing the Ube3a that I should
have given him and his fatherrsquos
Ube3a was just sitting there
perfectly good but dormant
It seemed possible plausible to be
able to get that paternal Ube3a off
the couch and into the kitchen All
we needed to do was turn it on
somehow and maybe Louie would
walk eat sleep well and speak
My husband and I used all our
medical wherewithal to help the
brilliant scientists move their ideas
about awakening the paternal gene
into clinical trials and real kids
Despite all the best efforts nothing
worked The paternal Ube3a
stayed a snooze I went back to
school at the age of 50 to join the
quest for the holy gene grail myself
as a PhD student in neuroscience
convinced that the cure lay almost
visible reachable just over the next
hump And it was In an amazing stroke of good fortune two young scientists Ed Weeber in Florida and Ben Philpot in North Carolina joined the fray and independently went to work on the problem In December 2011 right before the holidays both published papers
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
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SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
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SleepSafe IIreg - Medium Bed in Multi-Color
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SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
ANGEL ASSOCIACcedilAtildeO SIacuteNDROME DE ANGELMAN DE PORTUGAL
WWWFACEBOOKCOMANGELMANPT
CONTACTOSTLF96 8691906 (OPT)91 6474909 (TMN)96 6885700 (TMN)91 2448103 (VDF)
E-MAIL GERALANGELPT
WWWANGELPT
O SIacuteNDROME DE ANGELMAN DESCOBERTO EM MEADOS DA DEacuteCADA DE 60 PELO DR HARRY ANGELMAN O PEDIATRA INGLEcircS DE QUEM HERDOU O NOME Eacute UMA DOENCcedilA GENEacuteTICO-NEUROLOacuteGICA QUE SE ESTIMA QUE AFETE 1 EM CADA 15000 NASCIDOS VIVOS A CAUSA DESTE SIacuteNDROME Eacute NA MAIOR PARTE DOS CASOS A AUSEcircNCIA OU IMPERFEICcedilAtildeO DO CROMOSSOMA 15 (REGIAtildeO Q 11-13) HERDADO DA MAtildeE CARACTERIZA-SE ENTRE OUTROS PELO SEVERO ATRASO NO DESENVOLVIMENTO DIFICULDADE NA FALA DISTUacuteRBIOS NO SONO CONVULSOtildeES MOVIMENTOS DESCONEXOS E SORRISO FREQUENTE
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
SleepSafe IIreg - Medium Bedwith Padding and IV Accessories
SleepSafereg - Low Bed
SleepSaferreg- High Bedoers the most safety protection with two removable safety rails
SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
SleepSaferreg- High Bedwith one safety rail removedand one safety rail rotated down
SleepSafe IIreg - Medium Bed in White
SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
The gentleman in North Carolina had
designed one of those simply beautiful
experiments that I can now appreciate
as a neuroscience student He used
dishes of cells from a genetically
engineered mouse that would glow
yellow only if the paternal Ube3a was
turned on Then he poured a selection
of 2000 known neuroactive medications
and compounds onto the cells and
waited to see which ones would glow I
imagine him grabbing the plate with one
yellow well from a naive undergraduate
student and shouting ldquoEurekardquo Or
maybe he simply figured it was a
mistake and sent the poor beleaguered
student back to the lab to repeat the
experiment until he was convinced by
the evidence Amazingly
unexpectedly one drug a brain cancer
drug Topotecan allowed the paternal
Ube3a to activate turning the cells
yellow Philpot had found a way to cure
Angelman syndrome The cure
But what does it mean to cure a person
with a developmental disability Hasnrsquot
the brain developed in an abnormal
way Many people with Angelman
syndrome have microcephaly small
heads Doesnrsquot that mean that their
brains havenrsquot grown enough Doesnrsquot
that mean that the disorder is
irreversible
Not necessarily It is a question of
structure versus function If the
Angelman brain is built differently than
the typical brain then a cure might be
farfetched Whole neural pathways
would have to be unwound and
rewound channels filled in and re-dug
branches built where none had reached
before Maybe not impossible to fix but
nigh
On the other hand if Angelman
syndrome is a synaptic disease and all
the neurons are there but
misconnecting like diplomats
without a translator then maybe a cure
could supply the missing ingredient and
the neurons would jump into action A
few days before Philpotrsquos research came
out just before Christmas 2011 Dr Ed
Weeber published a separate study on
another strain of adult Angelman mice
Weeber delivered the Ube3a gene into
the brains of these mice and Angelman
behaviors normalized Thatrsquos right Full-
grown mice with the mouse form of
Angelman syndrome get better when you
supply the gene they are missing So it
isnrsquot structural Itrsquos synaptic
Weeber showed that Angelman
syndrome can be reversed and Philpot
found the drug that can reverse it What
luck
Hold your breath There is no way to
know if the drug Philpot identified will
improve Angelman symptoms in humans
until we try it in humans But what all
this means is that it is possible that
sometime in the near future we could
give Topotecan or some other drug like
it to a kid with Angelman syndrome
maybe even a teenager maybe even
Louie and reverse the symptoms
What does that mean Will Louie lean
forward and say ldquoPass the salt pleaserdquo
Will he run and jump Will he dream
Maybe hersquoll tell us all the things that have
been bothering him all this time recount
all the conversations wersquove had in front of
him and the cusswords wersquove said to
other drivers while he has been in the
backseat sweetly smiling
Louie has lived 13 years in silence
coddled and catered to Oh wersquove
worked him hard taught him to sight-
read flashcards and communicate a bit
through signs and an iPAD Wersquove
dragged him to swim classes and hippo
therapy and every other technique that
showed any promise
Hersquos learned a lot all these years but
what about all the lessons hersquos
missed things he hasnrsquot learned or
understood playmates and friends
hersquos never had sports hersquos never
played Even in the most active
and conscientious family the life of
an intellectually disabled non-verbal
child is severely restricted
Thankfully smiling a lot and being
happy is another well-known
symptom of Angelman syndrome
Will a ldquocurerdquo cause Louie to be as
anxious and crabby and irritable as
the rest of us
Does it matter If Louie had been
born with no legs and a fantastic
medical team had invented a form of
artificial limbs that could be
permanently implanted we would
have jumped to get him a pair
If Louie had been born with half a
heart we would have sent him to a
hotshot surgeon to manufacture the
other half out of his own muscle and
tissue
If Louie had been born with the gene
for Huntingtonrsquos disease and a drug
was discovered that could stall the
inexorable brain deterioration
caused by the mutation we wouldnrsquot
hesitate to give it to him
Strangely people I know are having
a very hard time with the idea of
giving Louie a drug that might cure
his mental retardation Experts on
developmental disabilities squirm as
if I am suggesting that we cure
Louiersquos ethnicity Educators
continue to insist as they always
have that pushing Louie to learn
academic skills is a waste of time
Friends balk assuming that a brain
disorder canrsquot really be ldquocuredrdquo and
that I am living in a state of rose-
colored denial
WWWANGELMANTODAYCOM January February 2014
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
SleepSafe IIreg - Medium Bedwith Padding and IV Accessories
SleepSafereg - Low Bed
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SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
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SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Other parents of children with
Angelman syndrome take offense
stating that AS is not a lsquodiseasersquo like
diabetes or cancer How not
It is perfectly acceptable to speak
about a cure for cancer knowing that
there might be lasting effects of
tumors even when they have been
removed and that strong
chemotherapy drugs might cause
terrible side-effects
But it is very very controversial to
speak about a cure for the mental
retardation or intellectual disability of
Angelman syndrome
I have been told not to use the
irresponsible word ldquocurerdquo I have
been told to say instead ldquovery potent
treatmentrdquo because the word ldquocurerdquo
might lead naiumlve parents to assume
that their children will actually jump
up play the piano or basketball and
get a driverrsquos license and we donrsquot
know what the drug will really do
That is exactly the point We donrsquot
know what the drug might do
It might let Louiersquos synapses
suddenly kick in make connections
faster remember ideas better retrieve
knowledge move muscles And all of
that might still not allow him to speak
or stop his seizures but it might allow
him to ldquothink strongerrdquo and perhaps
that would be sufficient to call it a
cure
The brain is a part of our body a
simple organ As anyone with
treatable depression will tell you
treatment makes them feel more like
themselves than they do when they
are depressed
A cure for depression would be a
godsend Angelman syndrome like
depression or alcoholism is a brain
disorder It seems to me more
irresponsible more lazy more selfish
NOT to talk about a cure for Angelman
syndrome and face the inevitable
side-effects and disappointments that
come along with any brain drugs
We have to wind our minds around the
idea that mental retardation at least
the kind caused by Angelman
syndrome might be cured In our
lifetimes
We have to keep an open mind about
what will happen in Louiersquos mind when
he gets the ldquovery potent treatmentrdquo
We have to continue to educate him as
well as we can in case he is building
memory stores that can be unlocked
someday We have to expose him to
as many social situations as we can in
case he can learn to communicate well
some day We have to prepare him to
be cured
Louie is not Angelman syndrome he
just has it like other people have
asthma or diabetes or alcoholism He
will still be Louie without Angelman
syndrome or with more controlled
Angelman syndrome
He will still be Louie if he is less
intellectually disabled And he will be
incredibly lucky
FDA Registered 866-852-2337
Wersquore here to help
SleepSafe IIreg - Medium Bedwith Padding and IV Accessories
SleepSafereg - Low Bed
SleepSaferreg- High Bedoers the most safety protection with two removable safety rails
SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
SleepSaferreg- High Bedwith one safety rail removedand one safety rail rotated down
SleepSafe IIreg - Medium Bed in White
SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
FDA Registered 866-852-2337
Wersquore here to help
SleepSafe IIreg - Medium Bedwith Padding and IV Accessories
SleepSafereg - Low Bed
SleepSaferreg- High Bedoers the most safety protection with two removable safety rails
SleepSafereg Beds is domestic USA manufacturer of adaptable safety beds featuring removable safety side rails designed to virtually eliminate entrapment and falls for those with special needs The SleepSafereg bed line includes SleepSafereg SleepSafereg II and SleepSaferreg models each oering more safety rail to mattress height
SleepSafeBedcom
SleepSafe IIreg - Medium Bed in Multi-Color
SleepSaferreg- High Bedwith one safety rail removedand one safety rail rotated down
SleepSafe IIreg - Medium Bed in White
SleepSafereg Beds are built to each order oering twin or full size xed articulating or HiLo frames padding and a range of nishes SleepSafereg Beds
help those with special needs get a safe restful sleep ndash and smiles on the faces of their
caregivers who see their loved ones getting the sleep they deserve
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Herersquos to a fantastic new year
New resources at your fingertipsThe Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals with Angelman syndrome Check out whatrsquos new
ASF Educational Webinar SeriesThe ASF Educational Webinar Series provides you with the most up-to-date information about living with Angelman syndrome The ASF invites experts to speak about topics that help families and caretakers improve quality of life for individuals with AS addressing topics such as research updates clinical developments tips for everyday living and managing symptoms and many more The webinars also allow you to ask questions and interact with these experts maximizing the value of your participation The webinars are intended to be a key source of information and support and we hope that you find this resource valuable in your journey with AS To learn more and see the list of upcoming speakers please click here
Informational Series on Angelman Syndrome BehaviorsThe latest update to the Informational Series on Angelman Syndrome Behaviors Neurologic and Medical Influences on Aggressive Behavior in Individuals with AS addresses the complex relationship between aggressive behavior and management of the many medical issues that are commonly experienced by individuals with AS Developed by Ron Thibert DO a renowned expert on AS and a clinician at the Comprehensive Angelman Syndrome Clinic in Boston this latest update explores how seizures sleep gastrointestinal and orthopedic health and pain management affect aggression and how these medical issues can increase or decrease aggressive behavior Click here to access this update
Rockville Centre St Patrickrsquos Day ParadeThe ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville Centre St Patrickrsquos Day Parade The Parade which takes place in Rockville Centre New York on Long Island raises funds at various events throughout the year leading up to St Patrickrsquos Day which are donated to three charities The more who participate in these events the more money will come back to the Angelman syndrome community Mark your calendars for
bull January24OurTasteOfRockvilleCentreStAgnesParishCenterafoodandwinetastingevent
bull March16CJCoffeeShopFundraiserCJrsquosCoffeeShopyoursquollbehard-pressedtofindabetterbreakfast on Long Island
bull March21GrandMarshallReceptionRVCLinksaformalreceptionhonoringGrandMarshall Sean OrsquoRourke
bull March22PARADEDAYCommemorativeMassatStAgnesCathedralfollowedbytheParade down Maple Avenue
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
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Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Herersquos to a fantastic new year
Save the Date Mark your calendars for the 2014 ASF National Walk on May 17th There are 29 walk sites this year and we look forward to seeing you
Thank you for your support of the Angelman Syndrome Foundation Your donation gives the gift of a better tomorrow to individuals with AS and their families
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
The human brain is
regarded as the fattest
organ in the human
body About 60 of the
human brain is
comprised of fat which
is the highest
concentration of fat that
is present in a single
organ in a healthy
human being
Did You Know
Here Are Some Facts About The Human Brain
The Myelin Sheath is a
protective covering on the
nerves in the brain Myelin is
75 percent fats and
cholesterol and it is 25
percent protein In theory
increasing essential fatty
acids provides the body with
the building blocks it needs
to build and repair myelin as
indicated by the University
of Michigan Health System
website
The human
brain is made
up of about
75 water
which
regulates
various
functions in
the brain
The human brain
consumes the largest
portion of the total energy
that is generated in the
human body To be
precise the brain
consumes 20 of that
energy despite the fact
that it only represents only
2 of the total body
weight The energy is vital
for maintaining healthy
brain cells and fueling
nerve impulses
KNOWING THESE FACTS WHAT CAN WE DO
-DRINK PLENTY OF WATER (BETWEEN 6-8 CUPS A DAY)
-ADD HEALTHY FATS TO EVERY MEAL
Olives Olive Oil Avocado Coconut Almonds Other healthy fats Grass Fed Real Butter Duck fat Red Palm Oil Fish Oil Organic Free Range Eggs
Therapeutic Diets
Fat Ratio
LGIT ndash 60 fats
Keto ndash 80 fats
Mod Atkins ndash 75 fats
Medical Diets to be monitored by
Physicians only
In the Movie Lorenzorsquos Oil based on a true story of two parents in a relentless search for
a cure for their son Lorenzorsquos Adrenoleukodystrophy (ALD) a heterogeneous disease which can
be fatal Despite research dead ends and the horror of watching their sonrsquos declining health they
persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually
containing two specific long chain fatty acids isolated from rapeseed [canola oil] oil and olive oil
It proved successful in normalizing the accumulation of the long chain fatty acids in the brain
thereby halting the progression of the disease Myleinorg amp Available to rent on Netflixcom
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
helliphellip
WWWANGELMANTODAYCOM January February 2014
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Justin Grill Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michiganrsquos Lake Michigan shore and was recently appointed as Assistant Director of Medical Education for Mercy Health A public speaker and expert regarding emergency issues with individuals with Angelman syndrome Justin and his wife Carrie are parents to four-year-old Noah who is diagnosed with Angelman syndrome and his siblings two-year-old Daniel and 10-month-old Hannah The Grill family has been involved with the ASF since Noahrsquos diagnosis in 2011 and has held fundraisers in their hometown of Spring Lake Mich Says Justin ldquoAs a parent and a physician I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman syndrome and the general community and I hope to use my skills in these areas to further support the Angelman syndrome communityrdquo
Tim BousumTim Bousum works in specialty sales with AstraZeneca Pharmaceuticals He and his wife Maiya Dos an architect with TriPyramid Structures have two children six-year-old Cooper and three-year-old Bode who was diagnosed with Angelman syndrome in 2011 Residents of Ipswich Mass the Bousum family are active supporters of the ASF and have raised more than $45000 during the last three years for the ASF National Walk site in Boston Says Tim ldquoBy joining the Board of Directors I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome I have seen first hand what this organization can domdashfrom opening Angelman syndrome clinics at major teaching hospitals to the Biennial Conferences that balance research medical care science and day-to-day living strategies at the family level to funding groundbreaking research the ASF is making a difference in the lives of our loved ones with Angelman syndromerdquo
Welcome our new Board membersPlease join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
Dr Angelman was born in Birkenhead England
He was an enthusiast for the language and
country of Italy
He first observed three children who were
unrelated but showed similar symptoms of
severe intellectual delay stiff jerky gait lack of
speech seizures motor disorders and happy
demeanors
Then while vacationing in Italy he observed an
oil painting calledhellip A Boy with a Puppet by the
renaissance artist Giovanni Francesco Caroto at
the Castelvecchio museum in Verona
Reminded of the children Dr Angelman
published a paper in 1965 that described what
he called ldquopuppet childrenrdquo At this time his
paper was not immediately recognized as
important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of
Pediatrics Division of Genetics University of
Florida College of Medicine Gainesville
submitted a paper to the American Journal of
Medical Genetics reporting studies of six
patients and comparing their data to those from
previous reports - severe developmental delay
ldquopuppet-likerdquo gait craniofacial abnormalities
and frequent episodes of laughter that it became
clear the syndrome was more common than
previously thought They proposed the name of
this disorder be changed to Angelman
Syndrome
The History of Angelman Syndrome
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Background As we all prepare for a new start in 2014 ideas and plans are being generated by individual
organizations around the world to celebrate International Angelman Daymdashour communitys global day of awareness This young initiative is the result of a lsquovirtual lsquogroup of organizations an informal lsquocollectiversquo
that demonstrates a spirit of global unity and collaborative support
Through 2012 national reps were gathered from around the world for this collective 23 organizations
voted for a suitable date and logo and by the time the inaugural day arrived 35 organizations were on board The number involved continues to grow and networking now occurs frequently and fluidly between
more organizations support groups parents medical experts and researchers
Organizations are invited to work together for our common cause together we have a stronger voice
together we have more resources to share together we can accelerate AS research International Angelman Day reflects this camaraderie and promotes all that is Angelman Syndromemdashthe bad side and
the good It serves to generate much needed funds strengthen ties across borders and open doors to
future collaborations within our AS community
Reasons for choosing
FEBRUARY 15th
February is International
Rare Disease month (RDD
falls on Feb 2829th)
It is also quite sweet and appropriate that it is so
close to Valentinersquos Day because the affectionate
demeanour so characteristic of this syndrome displays
such genuine unconditional
love
Link to world map showing
the 35 Organizations that
participated in IAD 2013
The number 15 relates to
t h e a f f e c t e d 1 5 t h
chromosome
The purpose of INTERNATIONAL ANGELMAN DAY is to
Raise awareness worldwide of the condition
Mobilise people to action amp encourage fundraising for the organisations in each country
Promote research and educational resources in each country
Remember those people with Angelman Syndrome who are no
longer with us
ldquoAnything anyone can
do to raise awareness is
greatly appreciated
No gesture too small
No such thing as the
insignificant
word or deedrdquo
- Colin Farrell
Things you can do for International Angelman Day
Raise awareness
Spread the word about AS in your own communitymdashat
schools churches workplaces sportssocial groups
etc Hold fun events that could generate media interest
Contact your local papers to report on your events Display the logo on T-shirts button badges caps etc
Hand out informative brochures about your own local AS organisations and support groups
Fundraise
Raise funds for a registered organisation you wish to
supportmdashfor AS research or education resources Be vigilant with good fundraising ethics to protect the
honour of this venture
A WEBSITE is being constructed
and will be launched soon Stay
updated by visiting the official IAD
facebook PAGE
h t t ps w w w f a c e b o o k c o m
InternationalAngelmanDay
++++++++
Share ideas and discussions in
the informal facebook GROUP h t t ps w w w f a c e b o o k c o m
groups112026595597947
+++++++
An up-to-date list of Angelman
Organisations and support groups
around the world can be found
here
angelmannetwork international -
networks
+++++++
International Angelman Day is also
a multi-cultural event that
celebrates our diversity as it
seeks to promote unity across the
global AS community
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Otorcross
wwwangelmannetworkcom
Fundraising mdash and other side-effects
All support organizations have
their own formal set of aims and objectives programmes and plans mdash and all require funds to action them Fundraising involves time and effort which has the potential to lead to more stress However It is often intriguing and sometimes uncanny how a good fundraiser is able to generate many other spin-offs that are often unexpected but ultimately positive for all involved
In New Zealand our population is just under 45million It has become a clicheacute to say that the lsquosix degrees of separationrsquo that supposedly connect every human being on the planet are reduced to two in lsquoGodzonersquo Most of us have either met the Prime Minis-ter know an All Black or have a friend or family member who knows a NZ lsquocelebrityrsquo This works to our advantage when raising national awareness about AS In this vein The Angelman Network is fortunate to have many enthusias-tic families across the country who have initiated a variety of very successful enjoyable and different fundraisers all with a Kiwi flavour and wonderful lsquoside-effectsrsquo Apart from the funds raised they have served to distribute our AS informa-tion raise awareness encourage local community support generate a wider public interest in AS and strengthen our networks In time this positive ripple effect will filter back to create helpful changes for our angels and families nation wide Our first IAD event triggered some creative celebratory initiatives that
involved angel-mufti days at schools and workplaces a formal movie night market stalls raffles and Trademe auctions Families were very proactive with the media result-ing in eight newspaper articles that reached out to thousands of readers across the country
In March Nadine Henderson facili-tated a hugely successful Charity Auction at her workrsquos annual confer-ence This brought in over $30K and spread awareness across Assurityrsquos nation-wide offices as well as to all the various businesses who had kindly donated goods
Laura Greenrsquos family live on a large farm in a rural district They love the outdoors and Motorcross and their unique Racing event for adults and children in honour of their angel Lexy was extremely well supported With an entry fee refreshments and raffles for sale it was a memorable family day that strengthened ties within their local community
Kathryn Cherie-Hope was inspired to organise a 15km Walkathon in her local district It was a well received social event that also promoted this powerful message
Kathrynrsquos informative article which appeared in a local newspaper and online and was recently spotted by Attitude TV who are interested in an interview in the New Yearmdashan opportunity to share her story as an angel-mum with the nation Looking back at 2013 it is very encouraging to see how much groundwork has been covered in diverse social sectors through these family fundraising endeav-ours and we thank our families for that We will soon be depositing the takings from our Christmas Collection Buckets - a very fruitful Shopping Mall fundraiser made possible by Neil and Louise Alcock
On track with achieving our aims and objectives 2014 is the year The Angelman Network proposes to focus on a pro-active plan for our involvement in AS Research lsquoHope reigns Supremersquo
[Ursula Cranmer Chairperson ]
ldquoWe have chosen a 15 km walk because it is the 15th chromosome that is affected in AS but also to symbolise the difficulty and length of time it takes our AS children to learn to walk and the strength and determination it takes to get thererdquo
- Kathryn Cherie-Hope
Angel Kaya with donated goods
Kathryn with angel Joel
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
The Gift of Helplessness
There was a Meeting in Heaven Several angels and other souls were present along with the usual Council members It was time to prepare some souls for their journeys on Earth Several Council members spoke about various topics in hopes that these unique souls would truly grasp the missions that they were about to undertake ldquoWhen you first emerge in your physical form you will still feel very connected to This Side which ironically they call the Other Siderdquo (A low chuckle ran through the room) ldquoAs time goes by ndash and it goes by very differently from the way it passes here ndash you will find that the fine line between Here and There becomes thicker harder to penetrate Your memory of this time and this place will grow dim until it becomes merely a notion that you actually ldquobelongrdquo somewhere else ndash somewhere better This happens to all souls that inhabit physical bodies You wont even notice it happeningrdquo ldquoBut in your cases there will be a difference Because of the extraordinary lives that you will live the fine line wont be quite as thick as it is for most humans You will much more easily maintain contact with angels and spirit beings and This Side There is a reason for this ndash not only will your needs be different during your lifetimes but your missions there are unique as well Hence the blessing of never feeling completely out of touch with True Reality Most humans end up believing that Earth life is Reality In fact This Side is Reality ndash Earth life is Fiction You the few will be able to recall this when your lives are difficult and your trials numerous This blessing we grant unto you allrdquo As the meeting wore on the time eventually came for each soul to receive a Personal Blessing before departing the vast Glory they knew so well for the unknown and untried territory of Earth life One by one they sat in the Seat of Blessing and received the Gifts that that would help them most in life They understood that this happens to all souls ndash but that their Gifts would be unique and enhanced ndash magnified if you will Finally there was one soul left to bless and send on his way Three angels who were magnificent beyond description stood behind the Seat of Blessing and gestured to the soul who approached with humility and grace He was so excited to be on his way to Earth life and the experiences that awaited him there He sat humbly in the Seat and bowed his head slightly as he felt the angels lay their hands upon his head ndash the Chief Angel among them speaking in a deep gentle yet powerful voice The angel continued
A touching story by Karen De La Fuente
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
ldquoYou shall be called Jonathan which means Gift from God To this family you will be truly a gift of the Most High Your mother has been told that she is barren ndash can have no children ever You will be a miracle to her and to your father - who chose your name when he was still a boy in anticipation of a son to carry on his name They will rejoice at your birth and you will feel that joy As time passes your parents will realize that you are very different from the son they were expect-ing to have Beautiful yes Very special to them yes You shall grow and be joyful but you shall not carry on your fathers name You will not walk You will not speak No matter how many Earth years pass you will remain a virtual babe in arms ldquoI give you the Gift of Helplessnessrdquo The soul wondered to himself ldquothe Gift of Helplessness What kind of Gift is that I saw others receiving much better Giftsrdquo ldquoThis Gift with which I endow you is mysterious and poorly understood You are aware of the Contract that you have affirmed that you would be born with special needs not common to most humans You have agreed to enter Earth life in this state with all of the accompanying trials and virtues that it entails The Gift of Helplessness is one of the greatest Gifts While you are unable to become independent or live what they consider a normal life you will be giving of yourself at all times Your Helplessness will aid not only your family but also everyone you meet in giving them an opportunity to grow and develop far beyond the scope they can imagine Your Gift will allow others to choose to assist you and in so doing learn extraordinary lessons that are hidden to most humans They will learn what is truly important They will learn how to give service unconditionally They will learn Sacrifice in ways that others can only dream of These priceless lessons come through your Gift of Helplessness and the sacrifice that you are making in trusting them to see to your every need just as all do in infancy ldquoAlong with the Gift of Helplessness I endow you with Joy Joy in the smallest of things Joy in living an Earth life devoid of worry stress temptations of the flesh crises of faith and fear You cannot begin to understand what it means to feel fear ndash and you will never ever have to ldquoIt gives me joy beyond measure to give you your final Gift This Gift is given to a very select few who inhabit the Earth I now bestow upon you the Gift of Returning to Glory ndash guaranteed Your Gift of Helplessness assures that you will return Home to This Side no matter how long or short your Earth life is no matter what occurs during that lifetime no matter what your circumstances may be while you are there You shall return whole complete unscarred and unsoiled from sin or errorrdquo Jonathan felt the angel grin broadly even though he could not see him He also felt a warmth and peace the likes of which he had never known Gone was his confusion about his Gifts Gone was his concern about whether or not he really could live up to his Life Contract He knew ndash knew ndash that he would take these Gifts and give his parents their family their friends and even strangers to them everything he could to help them achieve the highest level of Life possible
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Just as the angels lifted their hands from his head and he opened his eyes a smaller more feminine soul approached him His best friend on This Side How did she come to be here at the end of the Meeting Well no matter He rushed into her arms for a hug filled with excite-ment about entering his time on Earth As they embraced the angel spoke one more time
ldquoWe have noticed that you and this wise soul have spent much time together here in love and devotion She has affirmed her Life Contract recently as well and will be departing in about two Earth years time for life on Earth as wellrdquo They exchanged huge grins of shared joy at the news ldquoJonathan meet your sister At her request she has Contracted to watch over you and be your Earth life companion She will help you in your journey on Earth This she does willingly and gleefullyrdquo Jonathan and his soon-to-be sister hugged each other tightly and jumped up and down with excitement Oh To share his Earth time with his best friend Surely she would make his sacrifices easier to bear his lonely silences ring with laughter and his times of desperation seem like mere moments The angel touched Jonathan on the shoulder and his best friend released him from her embrace ldquoIt is timerdquo
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Angels in Action Celebrating the Abilities of our Angels
By Angela Humble Tucker Mom to Lukas age 15
Itrsquos hard to believe that we have a 15
year old son Our son does not do all
the typical things that a 15 year old
would be doing such as video
games hanging out with friends
talking on the phone (or I guess
texting) or competing in High School
sports Instead we have a 15 year
old boy who has Angelman
Syndrome which brings with it
limitations such as non-verbal
limited mobility cognitive delays and
more issues that would take up too
much space to list
Our 15 year old boy Lukas however
smiles more than a typical 15 year
old boy Lukas is a 10th grader at
Shakopee High School and is a
brother to a one year old Brody
Lukas enjoys people being out in
the community (everyone knows his
name) and has a hug desire to help
others Overall he is a great kid who
has been dealt with many
challenges
Our lives changed greatly June 23rd
2006 in more ways that I can
express at this time As parents we
are left with many tough choices and
those choices are greatly impacted
further when you have a child with a
disability We made a decision on
June 23rd to take away our sons
wheelchair and just encourage him to
walk and not rely on this chair any
longer At this time he was only able
to walk about 20 steps before
needing to rest
Back in 2005 our son Lukas had
surgery to release the tendons in the
back of his legs in an effort to get him
walking Lukas had never walked
despite efforts of Botox therapy and
encouragement This was essential
our one shot at getting him up and
about With the success of the
surgery and lots of hard work we
decided to just take away the chair
and never look back As parents I
think we can say we got this one
right Our 8 year old boy at the time
learned to experience life in a whole
new way
It was not an easy road to get Lukas
to walk successfully there have been
many bumps bruises and arguments
along the way In 2008 we begin to
get Lukas involved in as many
activities that we could find to keep
him moving and motivated He
started to play for the West Metro
Miracle League baseball What a
great opportunity for him to interact
with others and to learn to be active
I remember the first couple of years
Lukas played baseball once he made
it to home base he looked at the
crowd and clapped his hands as in a
way for him to communicate to the
fans to cheer for him The first few
years it would take him a while to get
around the bases Now with some
encouragement we can get a little run
out of him Lukas has been playing
for the Miracle League for the last six
years He can now hit the ball without
a tee I highly recommend this
program if you have one in your
neighborhood itrsquos been life changing
for Lukas
A few years ago I signed Lukas up for
soccer through the adaptive soccer
program at the school district and he
played for one year There were too
many rules for Lukas to play in the
program After working with our local
soccer association we found out that
Minnesota has a Top Soccer program
for kids with different disabilities Top
Soccer does not have as many rules
and different activities to meet the
needs for each player The soccer
association and I brought this to our
city and Lukas is now a soccer player
as well He has been playing soccer
for the last 3 years
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Lukas also participates in Special
Olympics bowling and bocce ball
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball
For Lukas these sports programs
are keeping him connected in the
community and making friends As
parents itrsquos about those same
things however we are trying to
ensure that he is staying activity
and on his feet
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football Lukas enjoys
watching as much as he
participates He currently has
created a great relationship with
the High School girlsrsquo basketball
team They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game Attending these
different games for Lukas is
another way for him to be
connected with classmates
teachers and community
members
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to ldquohangrdquo out in the
community with their peers Lukas
loves and looks forward to each of
these events Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldnrsquot have it any other way
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run) He is able to interact in
so many different ways than when
he was in a wheelchair There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
the wheelchair so at this time we are
grabbing at every opportunity to keep
him active
As a non-verbal kid this brings about so
many challenges questions and
behaviors Lukas has his own language
that we as parents can understand
most of the time Communicating to the
outside world is much more difficult In
hopes to close that gap we have Lukas
use an IPad for communication He is
currently using the MyTalk app and is
pretty successful for the most part
Anytime you have a device speak for
you your language is limited
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures favorite things what he
does in school and etc The IPad for
him is much more portable now that he
is not in a wheelchair Lukas is
motivated by electronics so this was a
good choice for us I tend to find the
biggest challenge for Lukas is when
others donrsquot know how to use the app or
know that the app is there This creates
frustrations and behaviors for Lukas
Lukas can also communicate using
some sign language and by answering
yes or no questions In 2010 Lukas
finally spoke his first work which was
Mama Trust me when I say this
completely melted my heart and I still
love to hear it even if itrsquos a thousand
times a day Lukas continues to go to
speech therapy Often times Irsquom at a
loss with communicating with Lukas Itrsquos
just breaks my heart when he is sick
and just canrsquot communicate to me what
is wrong Or holidays and birthdays
when he canrsquot communicate a present
that he would like I do worry about the
future and Lukasrsquo communication needs
when we are not around Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life
There are so many struggles that come
with journey we are on The struggles
are truly only known by those who have
or are walking in our shoes The
older Lukas gets the harder the
struggles seem to be Itrsquos
amazing to me how much before
Lukas we took for granted Now
we treasure every moment big or
small and are so thankful for what
he can do We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted
WWWANGELMANTODAYCOM January February 2014
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
THERAsurf is an amazing organization My son Finn thoroughly enjoyed his surf experience - he spent the
entire time grinning and giggling with utter joy But the real gift of THERAsurf is much more important than one wonderful day - watching from the beach as one of the surfers paddles out into the ocean with your child and then catches a wave is the most awe-inspiring and emotional experience imaginable With each wave barriers and limitations given by doctors are smashed and you are left with the realization that given proper support the opportunities and possibilities for your child are endless Thank you THERAsurf for a life-changing experienceldquo --Tina Thompson
We help children and their families access the stoke of surf culture and aspire to create a can-do
environment in a world full of limitations
wwwtherasurforg
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
History
Angelman Syndrome Belgium is an association
which was founded in 2011 by some parents who
have a child with the Angelman Syndrome
Aims
Our main goal is to reach the Belgium families
that have a child with the Angelman Syndrome
so we can share practical information support
each other and share as well up to date scientific
information
Activities
Yearly we organize a couple of events during
which we aim to provide a nice relaxing day for
the families Also brothers sisters and grandpa-
rents of the Angelman child are very welcome to
join on these days Our organization tries as
well to raise awareness of the angelman syndro-
me to physicians and caregivers Also scientific
research is supported by our association
FOLLOW US ON
Parents Organisation
A N G E L M A N S Y N D RO M E B E L G I U M
httpstwittercomangelmanSB httpswwwfacebookcomAngelmansyndroom wwwangelmansyndroombe Postangelmansyndroombe
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew
Sleep and Stress Management using Essential Oils for Angels Teachers Caretakers and ldquoYourdquo
I was introduced to Young
Living Essential Oils three
years ago by another special
needs Mom our son Matthew
was 14 at the timehellip
I really had no experience with
essential oils or aromatherapy
I always thought that we lived a
pretty healthy life style ate
well exercised amp tried to get a
good nights sleep - tricky with
our Angelman Kids
We are now a family that lives
on Stress Away Deep Relief
Lavender Peace amp Calming
Frankincense Lemon Thieves
Ningxia Peppermint and more
This is my everyday survival
kit
I am sure that you are
wondering How can this help
me
A little cautious I began our
journey my first move was to
rid toxic chemicals out of
Matthews environmentNo
more Purell Antibacterial
soaps toxic cleaning products
shampoo or toothpaste I had no
idea that these everyday items
were compromising Matthewrsquos
life disrupting hormones and
causing inflammation in his
already busy body gut and
brain
Whatrsquos in your Environment
I replaced everything in our
home with ldquoThievesrdquo a blend
of Clove Cinnamon
Eucalyptus Rosemary amp
Lemon oil You canrsquot control every
environment our Angels are in but I
continued with Matthewrsquos school
where he spends 6 hours a day
There he works on Adult Daily
Living skills so I provide his own
special non toxic ADL kit -
Thieves hand sanitizer foaming
soap toothpaste Ningxia (an
antioxidant drink) No more
Triclosan anti bacterial products
boxed fruit juices and other
products loaded with harmful
chemicals
My next step was to diffuse and
topically apply different oils
(Therapeutic grade only You must
be very careful where you get them
from) Not all essential oils actually
contain therapeutic and healing
properties Many oilslotions found
at general health food stores contain
additives or chemicals and may
contain plant lifeblood to some
degree but they have not been
processed in a way to guarantee
therapeutic constituencies that can
heal Thatrsquos why it is important to
know how the oil is processed and
what claims can be made for using
it
I started with the basics
Lavender I started diffusing
Lavender in Matthewrsquos room
every night an hour before he
went to bed and he slept so did
we This has helped to reduce
stress for all of us If you are
wondering the fun cool air
diffuser with the light and steam
(see photo above) does not
remain unattended in his room
Too much fun for sure I also put
a few drops of Lavender in his
Epsom salt bath and on his
pillow so it diffuses all night
Lavender has helped us to
Relax Stay Calm Breathe and
Heal
Our next oil was Peace and
Calming The name alone
hooked me This is a blend of
tangerine orange blue tansy
pachouli amp ylang ylang The
sense of smell is a powerful one
and this helps with anxiety
behavior and to take the edge off
us all Much to our surprise this
started to help not only Matthew
but his bus aides personal aide
and our family
I apply Thieves on hisour feet
everyday For those of you into
reflexology there are incredible
benefits a conversation for
another dayI like applying this
with a roller cap as I have to be
fast with him as he is always on
the move I diffuse amp spray
Thieves to kill any airborne mold
spores and germs No one got
sick last year
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Next I changed Matthews drinks Who knew that
Pediasure wasnrsquot the ldquobestrdquo ever as per his
pediatrician He now drinks Young Livingrsquos Ningxia
Red containing Wolfberryrsquos Lemon Orange and
numerous oilsThis has helped his immune system
and helps to support his digestive health
The greatest surprise of all is that we started on this
Holistic journey for Matthew and it has changed our
entire home how we live how we reduce our stress
levels and deal with aches amp pains
Wishing you a Happy and Healthy 2014
wwwYLivewellcom
Quick tips
Purification -Diffuse and spray in your home car
office rather than toxic air fresheners like glade kills
petrochemicals in the air
Peppermint helps with digestion headaches
extreme heatto name a few
Look for my tips in your next Angelman Today
At 17 you realize that there is no magic answer
but a combination of strategies that will help your
Angel families and caregivers Aromatherapy
removing toxins changing Matthewrsquos diet and
replacing our medicine cabinet with plant based
products has significantly changed our lives I now
help educate other special needs families
We learn from each other how to help balance our
lives both physically amp emotionally
WWWANGELMANTODAYCOM January February 2014
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
The Israeli Angelman Syndrome Foundation was established in
2012 with the aim of consolidating the efforts carried out in Israel
to improve the lives of people with AS by promoting early
diagnosis research treatment and training The foundation is
designed to provide services to all Israeli children with AS and
their families
We seek to advance the awareness understanding and treatment
of AS with the ultimate goal of finding a cure We offer
consultancy and mental support for AS families We hold social
gatherings for AS families in holidays and weekends with the hope
of giving these families support and hope To this end we feel it is
important to cooperate with AS organizations around the globe
share databases and information and actively participate in
research and trials
The Israeli AS clinic operates within the Pediatric Neurology
institute of the Sheba Medical Center in the city of Tel-Aviv
Children with AS are treated by a dedicated team of physicians
including a psychiatrist and a nutritionist led by a pediatric
neurologist The clinic applies a multidisciplinary approach to
address the main clinical issues of AS including seizure and
movement disorders speech difficulties sleep disorders
hyperactivity and attention disorders in addition to other
behavioral and Orthopedic concerns The Sheba AS clinic aims to
conduct a dedicated research and clinical trials on AS and to
collaborate with AS centers worldwid
Over the last year we have held two scientific symposiums with
various presenters in the areas of neurology speech therapy and
psychology as well as lawyers specializing in social security
procedures
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Chocolate Hemp Milk (Excellent alternative to dairy for those with allergy sensitivity and congestion)
One cup of hemp seeds12 cup of filter water I
use green tea
2 drops of vanilla stevia
One drop of vanilla flavor
Blend everything in a food processor for a
couple of minutes
Filter or not in a cheesecloth I keep the hemp
seeds for later I mix them with yogurt or in his
soup or with vegetables
One 12 tsp of organic raw cocoa unsweetened
About 15 carbs
One tsp of coconut oil
Mix everything together
Enjoy
WWWANGELMANTODAYCOM January February 2014
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
90 Improvement in Seizures
My interview with Dr Ron Thibert from my blog in
December 2012
I recently had the opportunity to catch up with the
Angelman communities very own trusted
Neurologists Dr Ron Thibert
He is the Co-Director of the Angelman Syndrome Clinic
at MassGeneral Hospital for Children in Boston His
specialties include Neurology and Epilepsy Service
Many families in our community travel from many other
states just to see him He really understand how to
provide the best treatment for our kids Angelman
Syndrome is so rare and when it comes to their brain
and seizures our kids need the best They need
someone who has experience to draw from when
deciding the best treatments and medications
Posted here is a YouTube video of Dr Thibert in an
interview talking about seizures in individuals with
Angelman Syndrome and effective Nutritional therapies
like Low Glycemic Index treatment (LGIT) and the
Ketogenic diet Dr Thibert has been a long time
supporter of dietary therapies in controlling seizures He
has seen the proof in EEG reports for many of his
patients In fact in one of my earlier posts entitle Stop
Seizures with 3 Nutritional Therapies I shared with you
the story of young Jace who has not had a seizure but
shares in the typical AS abnormal EEG showed
improvement after beginning the GFCF diet His mom
told me he is now considered to have a Normal
EEG Thats Fantastic
Dr Thibert and his team including Dr Elizabeth Thiele
(both are members of the Scientific Advisory Commity
for the Angelman Syndrome Foundation) and Heidi
Pfeifer RD LD Nutritionist were able to launch a clinical
study to determine the efficacy of the Low Glycemic
Index Treatment in reducing seizures in individuals with
Angelman Syndrome In July 2012 the results were in
and published in Epilepsia and on the Angelman
Syndrome newsletter
The results were better than we had expected said Dr
Thibert 80 reduction in seizures and 90 reduction
after 1 year and ALL experienced no significant adverse
effects 5 of the 6 individuals remained on the diet said
Thibert
I asked Dr Thibert who would be the best
candidate for this dietary therapy
He said Anyone with 1 failed antiepileptic
medication
How does one get their child on the program
Patients may come and see me for an initial visit
we can run the necessary tests to monitor medication
and a few other things and they can consult with our
dietician Heidi Pfeifer or transfer to a local dietitian
closer to them Food Allergies will be tested Then see
me on a yearly basis Labs should be monitored every
3 months which include Electrolytes Cholesterol
Liver panel Carnitine and Vitamin D
My son is on the Gluten Free Dairy Free diet how
does that compare to LGIT
They are actually quite similar when you take out
the gluten your are removing a large portion of the
carbs like pasta and bread which will lower your
glycemic index The LGIT consists of high fats and
meats and cheese are staples of the diet
Once the individual is on the diet how long before
you can see results
It may take a few months to kick in The diet must
be consistent and limit carbs to 40-60 grams per day
Who would not be a good candidate for this diet
It is not recommended for those on a G-
Tube Another option for them would be the Ketogenic
diet There is a product called KetoCal and it can be
used to assist with the ketogenic diet
WWWANGELMANTODAYCOM January February 2014
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Why dont more doctors suggest dietary
therapy as a first and safe option for seizure
treatment
My guess is lack of awareness and maybe they
do not want to change what they have always
done which is prescribe medication the evidence
is there to support dietary therapy We are looking
into preparing a package of material to help
educate other dietitians
Here is the publication available on PubMed
Dr Thibert is hopeful that this information will get
out into our community and more people will use
the Low Glycemic Index Treatment to reduce
seizures 80-90 reduction is astonishing In my
humble opinion if your child with Angelman
Syndrome or any seizure condition for that matter
is still having seizures you should try this diet
It breaks my heart every time I hear of someone
in the hospital with suffering with seizures We
see the same thing every time Doctors dont
know the cause they check levels of medication
in the body or do an EEG and in the end they just
prescribe more medicine Been there done that
too many times with Nathan It wasnt until I took
his diet into my own hands armed with the right
information an excellent team of physicians that
understand the importance of diet and made it
happen You can too Dr Thibert is willing to
help each and every one of you
Contact Dr Thibert Office Phone 617-726-6540
Pediatric Epilepsy Program 175 Cambridge
Street Suite 340 Boston MA 02114-2796
Another person who is willing to help is Angel
Mamma Sybille Bellamy She has created a
facebook page dedicated to what she is calling
the Angelman Syndrome Diet She shares the
recipes she uses for her son Max who has been on
the diet for years She also shares important dietary
info and articles
For an example Sybille has listed a meal plan of 1
day for Max on LGIT
Morning breakfast 2 tbs steel cut oatmeal cook in
coconut cream 1 table spoon of manna coconut
1tbs of coconut oil 1tbs of mix seeds-hemp chia
sesame flax seeds and 1 tbs of walnut butter
Drink is herbal tea with coconut oil
At school Max drinks herbal tea with MCT and a lot
of water with lemon juice
Lunch 3 tbs of sheep yogurt 2 tbs of grated apple
1 tsp grated carrot 12 avocado 1tbs almond butter
1tsp of MCT
Nurse give him MCT (medium chain
triglyceridearound) 2 pm 5ml at school
Afternoon snack home made almond milk 1tsp
coconut flour cinnamon and 4 strawberries
Dinner Vegetable soup- kale spinach carrots
onions with one egg grass fed butter goat cheese
He likes to drink before bed- coconut milk with 12
tsp of coconut flour Max drinks a lot of water
I hope you find this info helpful on your journey of
helping your loved ones achieve the healthiest lives
possible We may not yet have a cure for AS but we
have these therapeutic diets to help us against life
threatening seizures
ASK DR THIBERT
Does your Angel have seizures
Are you interested in starting the LGIT but have some questions
Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will
answer your questions about the Low Glycemic Index Treatment
There are a few ways you can participate Email your question to contactangelmantodaycom
Write on our Facebook page or
Tag angelmantoday on Twitter AskdrT
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Tel 670 90 90 07infoangelman-asaorgwwwangelman-asaorg
The Angelman Syndrome Association (ASA) is a
non-profit organisation founded in Barcelona in
October 1996 on the initiative of a group of
concerned parents with children affected with this
syndrome
Our association is comprised of an approximate
number of 200 affected families dotted around the
country
Our association was formed for the purpose of
enhancing communication among the families
FAMILY MEETINGS
Every year we celebrate the family annual meeting to
be held in the different autonomous communities In
2013 this meeting was held in Torrejoacuten de Ardoz
(Madrid) During these encounters we organise
leisure and fun activiites for the children as well as
professional conferences on education medical social
or legal issues
This way awareness is raised by sharing opinions and
experiences among parents and keeping in contact
with caregivers and medical professionals in the
Angelman Syndrome
providing support counselling and information and
fostering research for a deeper knowledge at all levels
on the AS that will allow affected individuals to attain a
better quality of life Mainly concentrated on the
purpose of supporting the families of affected
individuals particularly those newly diagnosed we
have a supporting family network around the country
who voluntarily provide support and advice to parents
who require guidance and information
Moreover we keep in contact with other international
Angelman Syndrome Associations to foster the
exchange and sharing of information as well as
collaboration in all the different fields
This year we have hosted
Dr Weeber and also Dr Mayor
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Main events 2012 and 2013
MAIN ACTIVITIES
An intense activity has been carried out by ASA during the last year thanks to the great commitment
of its members Different events have been organised with the aim of raising awareness and funds
for research We have equally participated in a large number of events or activities organised by
other associations and institutions where we helped setting the tables for the merchandise selling in
order to raise funds
RAISED FUNDS ALLOCATION
The purpose of all our activities is raising awareness of the
Angelman Syndrome and raising funds for the actual
management of the association as well as to foster
research
This way the funds raised from the old mobile collection
are monthly sent to the FAST in order to finance Dr
Edwin Weeberrsquos research Part of the assets were
allocated to contribute to a clinical trial with minocycline
which is likely to be initiated soon in a spanish hospital
ASA would collaborate with that hospital in case it
required a money contribution or with the member
families who would take part in the trial
There are also a certain amount of funds being allocated
to a research that is being carried out in Spain by Dr Ugo
Mayor in the CIC Biogune Center
PROFESSIONAL CONGRESSES
In 2012 a university congress was organised
inValladolid on the Angelman Syndrome We are
aiming to host another professional congress in
early 2014 This encounter seeks to advance the
awareness of Angelman Syndrome among those
professionals who take care of our children
(physiotherapists speech therapists psychomotor
specialists special education teachers etc) to help
them with how to deal with the management of
children affected with this syndrome
Our main fund raising campaigns
1- Old mobile phone collection for recycling them for trade
That was a very successful initiative in which over 68000 mobile
phones were collected in a yearrsquos time
2- Handmade product selling produced by the mothers mem-
bers of the association such as bracelets necklaces earrings and
other jewlery but also biscuits and different items
3- Awareness rubber wristband selling
Moreover a large number of other events have been carried out
during the last year (bazaars sport events charity events and
festivals etc) especially the Padel Tournament held in February
on the occasion of the International Angelman Syndrome Day
where the raised funds were enterely donated to the FAST
(Foundation for Angelman Syndrome Therapeutics)
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
The Board of Directors and the Community Relations Committee of CASS are pleased to advise that the Registration Booklet for the 13th International Conference of the Canadian Angelman Syndrome Society Unlocking the Possibilities is now available Conference Committee Co-chairs Tim Klein and Chris du Plessis look forward to welcoming delegates to Ottawa from 23 to 25 July 2014 to hear presentations from an outstanding slate of speakers For more information visit httpwwwangelmancanadaorgconferences See you in Ottawa
WWWANGELMANTODAYCOM January February 2014
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Angelman Syndrome and Sleeping Disorder By Sybille Kraft Bellamy
Angelman syndrome children
and adults have serious sleeping
disorders Apart from seizures
problems it is one of the most
difficult aspect of the syndrome
to live with
Some angels sleep only a couple
of hours a night some fall asleep
easily but wake up very early
and some fall asleep very late
and sleep late in the morning
This can disturb the school
schedule or therapy sessions and
it is exhausting physically and
psychologically for the
parents and caretakers
The majority of angels
do not take naps and
when they fall asleep
it is usually late in the
afternoon which
disturbs the usual
sleep pattern In order
to increase the chance
for our angels to fall
asleep at a normal time
it is very important to
keep them physically active and
intellectually stimulated during
the day
For Max del+ 12 years old we
have a very strict schedule
During the week we wake him
up everyday at the same time
After that he has breakfast and
takes the bus to school His
schedule at school is very full
They rotate all the typical
therapies (OT PT speech
therapy) all day and he is
physically engaged either
standing or walking throughout
the day
When he gets home from school
He has a meal playtime or
therapy and an early dinner
After that he takes an Epsom
salt bath with dead-sea salt just
before going to bed he has
another meal
ldquoGo to sleep little babyrdquo
I believe our children are very
sensitive to our mood and they
can very easily detect our
emotions It is very important to
be calm and quiet when we put
our children to bed As soon as I
put him to bed I turn off the light
immediately and tell him it is
time to go to sleep I also use an
essential oil diffuser a white
sound machine and a night wave
assistant Keep brothers sisters
and pets away during this
specific time in order to avoid
any stimulation You can do a
feet or hand massage with
coconut oil and essential oil
Max sleeps in a homemade
enclosed bed He loves the
cocooning feeling It feels safe to
him and it is his private area He
kicks us out of his bed as soon he
is in it
Keep the room temperature low at
64 degree F If your child pushes
away blankets use a fleece pajama
on top of a cotton one You can
also have them wear cotton socks
Use dark drapes for the windows
and be sure to keep the window
open during the day to renew
oxygen in the room
Follow your usual routine with
melatonin or other sleeping aid
Max does not take anything Keep
a cup of water or herbal tea
available for your angel
A lot of children have
snoring problems at
night The low room
temperature and a
humidifier will help the
situation
It is normal for children
to have enlarged
adenoids and tonsils and
for that reason they
snore Those glands are
part of the lymphatic
system Both help
protect a person from infection by
trapping germs entering in the
mouth and nose Our angels are
very curious and explore a lot
they put their fingers in their mouth
and drool which leaves them
expose to germs
Nutrition is a key factor in your
childrsquos quality of sleep The other
reason for enlarge adenoids is a
chronic inflammatory reaction to
certain food This very common
intolerance concerns sugar milk
and gluten
Choose kefir or plain organic
yogurt in which lactose and
proteins are already broken down
by beneficial bacteria If you can
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
choose goat product or
unsweetened non dairy products
over cow products
Most of the processed foods contain
preservative and coloring avoid all
of them too
The LGIT diet will help a lot for
angels who wake up at night The
complex carbohydrates with the
perfect ratio of fat and protein help
temper blood sugar fluctuation and
with the frequent small meals it can
help reduce GERD
Children can wake up at night when
they have hypoglycemia It is a
natural brain alert to wake up if the
blood sugar level is too low When
this happen try to feed your angel
with a nutritious meal A mix of
coconut cream with peanut butter or
seeds an avocado or a drink with
warm coconut milk and coconut oil
with a tsp of coconut flour
It happens with Max from time to
time It can be the result of a growth
spur a very busy day or a change in
temperature
A good night sleep is essential for
the brain
Many studies are calling sleep the
detoxifier of the brain We all know
the effect of a bad or poor night of
sleep Our children are prone to
seizures and the lack of sleep
lowers their immune system making
them more fragile in case of
infection
I hope these little tips can help you
to regulate your angels sleep
We do also have a plan B and C
Use a DVR in the bedroom with a
timer and keep your earplugs within
reach
Walnuts are full of protein fat vitamins and minerals
-excellent brain food
Chop finely in a food processor and sprinkle over
cereal or yogurt for those that do not chew very well
Always check food allergies to nuts Do not give if
allergic or sensitive to nuts
Wonder why many of our Angels love bananas
They are rich in
potassium also a good
source of vitamin B6
which is needed to make
melatonin
WWWANGELMANTODAYCOM January February 2014
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
ANGELS WEEK OFF
Since our daughters Angelman
Syndrome diagnosis in 2007 my
wife and I have embraced the
community of people who share
our journey Weve been
fortunate to have had helping
hands around us when we needed
them Weve tried to be those
hands to others whenever and
wherever we could The road is
difficult for caregivers of people
with special needs and it never
really ends
In 2010 we started our own non-
profit 501c3 The Angel Wings
Foundation The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it The first few
Bella Bashes were accounting
nightmares Money was
changing hands and we wanted
people to know where it was
going and how it was being used
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward Angelman Syndrome I
dont like having those kinds of
grey areas in my life
Our little foundation doesnt take
in a lot of money and we dont
actively raise a lot of money We
do a few benefits a year and we
try to keep our support as local as
possible Weve funded therapy
programs at the Vanderbilt
Kennedy Center Weve helped
Tennessee residents with IEPs and
other services Weve made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations We
attend every Angelman function
we can get to and we help
wherever we can
In the coming years we intend on
refining our focus and expanding
our reach But we still think of
ourselves as just here to help The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground We are cheering
them on whole heartedly But in
the meantime while we all wait
on the next exciting breakthrough
or therapy and while we
continually connect with each
other to discuss everything from
recipes to bedtimes time slips
through our fingers and fatigue
sets in Days turn into months
then into years Sometimes we
as parents just need a break
Yolanda and I were discussing this
very thing this summer when we
kind of hit on an idea
We decided to offer something
through our foundation that
might be just the ticket for
someone Were giving away
what were calling an Angels
Week Off Were giving away a
vacation basically Three days
and three nights in San
Francisco at a five-star hotel
Then three days and three nights
at a music festival in Napa
Valley Its called Live In The
Vineyard and its three days and
nights of live music amazing
food and wine tastings Former
artists whove been at this event
include Alanis Morisette Lenny
Kravits Daughtry James Blunt
Zack Brown Band Plain White
Ts Colby Calait and the list
goes on and on and on The
event is spectacular and we can
think of nothing better than the
Napa Valley music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge
Many Angelman parents have
never even been away from their
Angels for one night We
understand how difficult it might
be for some to trust a third party
Angels Week Off
Enter to Win
San Francisco CA Napa Valley CA
3 days 3 nights in San Francisco CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley CA
ldquoLive in the Vineyardrdquo Music Festival
WWWANGELMANTODAYCOM January February 2014
Angelman Today
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
from Best Buddies a representative
from Make A Wish and Lizzie Sordia
managing editor of Angelman Today
will decide on the winning
applicant The Live In The Vineyard
event takes place twice a year Once
in April and once in November We
will coordinate with the winning
family as to which week theyd like to
do Then the fun begins
There are so many heavy things
Angelman families deal with on a
daily basis There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children We know this and we are in
it with you But sometimes its
important to get away drink some
wine and get lost in a song or two
This is the world Yolanda and I know
and its something we can offer
We appreciate Angelman Today for
helping us coordinate the contest We
believe its going to be a wonderful
experience for one deserving family
Our prayer is that in the future we can
make something like this happen for
every Angelman family
You can enter your essay at
angelsweekoffangelmantodaycom
with the enormous responsibility
of caring for their Angel for a
solid week So were also
providing a male and female
caregiving team who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week
We want it to be a week off for the
Angel too The team will take the
Angel to the park or the zoo or a
museum each of the seven days
An activity for each day will be
chosen in coordination with the
parents and the parents designated
caregiver ahead of time Our team
will be there to help in every way
possible There will be skype and
face time available any point the
parents want to check in We want
them to feel good about the hands
their Angel is in We want them to
relax We want the Angel to have
a great time as well
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing But
this year well start with one
family and see how it goes
Yolanda and I dont want to be
involved in choosing the family
so were making it a contest of
sorts through the new publication
Angelman Today Were asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey
We want to hear your story Were
asking that all applicants have an
Angel over the age of five-years-
old The first 50 will be accepted
Then a panel made up of one of
our board members a
representative from Special
Olympics a representative
AD
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Sibling Love and Support
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
A short tale on how we got united
By Betty Willemsen Founder of Nina Foundation
You see Tweets and Facebook messages on one of
the most exiting achievements the Alliance on
Science is born How is this accomplished and how
does it work
I guess you even wonder how to participate
First International Conference on AS Rotterdam
October 2012
In 2012 the Nina Foundation (NF) invited every AS
organization they could find to Rotterdam to present
their idea on working as an Alliance I invited each
one personally so I do know the efforts I have made
to reach people from New Zeeland Australia Japan
USA Canada Israel Argentina Spain Denmark
Sweden Finland Ireland Italy France Germany
etcetera etcetera But not all replied so we send a
second letter and a third sometimes through different
channels
The organizations could make it to this International
scientific meeting in Rotterdam together with an
impressive crowd of scientists were all asked to
participate in 2 brainstorm sessions on HOW to create
the most effective Alliance
All the remarks were taken seriously and a
questionnaire was developed to further investigate the
possibilities and weaknesses ()
Legal work May 2013
Then the NF wrote a memo on the most efficient and
internationally effective way to work together We
wanted no costs and we needed to avoid the tax
problems that some countries encounter when
participating in a larger initiative And above all we
needed to work as equals as a community and
without creating confusion for parents
This memo has been spread to the organizations that
had made it clear to be interested And they got a few
months to react to this memo so eventually a lot of
changes were made And now there is a wonderful
simple and effective Alliance thanks to all the good
input that we received
The first pioneers sign the Alliance Rome
October 2013
In October 2013 we agreed to come to Rome
during the international conference set by ORSA
the Italian parent organization There we sealed
the agreement with a group of starters after long
and intense meetings France Italy Belgium
Ireland England and Nina Foundation signed and
all offered the financial input to start the first call
for scientific research The other organizations
also agreed to join and were sorting out if they
could immediately participate with money or
better do this next year 2014 For example
PWAV Japan and Germany This means that you
can still join if your country does not have a
participating parent organization yet
Goals of the Alliance on Science
For the first period of our cooperation the mutual
goals are
bull the joint funding of current research projects
bull the joint funding of new research projects
bull setting-up annual meetings of the scientific
advisory board combined with a biannual
meeting with other scientists in related areas
of expertise as a new view on Angelman
Syndrome may lead to promising new insights
and projects
bull setting-up a network of multiple scientists and
parent organizations in order to be eligible for
funding by (for instance) the European Union
How it works
In relation to the project-funding process these
are the steps (per call)
Each country presents one parent organization as
their representative to participate in the Alliance
That organization combines the funding created
in their country and labels it with the destination
lsquoFunding Alliance on Sciencersquo
After determination by the parent organizations
of the amount of funds they have available for
joint funding of research projects they sign the
Alliance on Science Angelman Syndrome
WWWANGELMANTODAYCOM January February 2014
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Raspberry Mousse LGIT ndash Low Glycemic Index Treatment approved
Ingredients 12 cup of frozen or fresh
raspberries
2 eggs whites
2 tablespoons of creme fraiche
heavy cream
3 drops if stevia
Sour cream amp 1 drop of stevia
vanilla for icing
9 Carbs Total
Whip the egg whites whip the
cream pour the fruits amp mix
everything together
Use small individual cups rub the
inside with coconut oil pour the
mix very carefully keep in the
freezer for a couple of hours
Take out the cup place upside
down on a plate cover with sour
cream flavored with vanilla
Enjoy )
WWWANGELMANTODAYCOM January February 2014
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Alliance agreement that states the wish to make
funds available and the amount of funds which will
be available per the moment the grant(s) is (are)
awarded
Then the scientific advisory board sets up a call
in which they include the most important
cornerstones on research
The first stage of application period starts
application by sending in two-pagers on research
ideas
Then the second stage of application period
starts on the basis of the aforementioned assessment
the European scientific advisory board invites one
or more applications to send in a more detailed
application
Eventually those detailed applications endure
assessment by the scientific advisory board and they
draw-up a ranking of the applications which are
eligible for funding
Now the participating parent organizations
come in play and decide which of the ranked
research projects are awarded a grant
And then we draw-up separate funding
agreements between the relevant researchers and
each of the participating parent organizations with
respect to their part of the funds connected with the
awarded grant
The funding goes from the parent organization
directly to the scientist There is no bank account
in between to park all funding from participating
countries
Whom does what
The parent organizations keep everyone in their
country informed and pays their part of the funding
to the scientist
The scientific board is in charge of the calls
assessments reports and evaluations
The NF does most of the work necessary like
communication between parties administration
and reports
Here we go Paris October 2014
The next meeting is in Paris 2014 October
Have a look at their website for more
information They also ask for financial help in
organizing the event Perhaps you can think
about this In Paris the scientific call for
projects will have selected a few scientists to
give a presentation to the group about their idea
What can you do
After reading this you might get exited and
wanting to help And you can
You can join donate or fund raise there are
countless ways you can help If you need ideas
please contact the parent organization in your
country or the Nina Foundation
For legal information on the alliance you can
directly get information from Martijn van
Steensel who works at the legal firm Loyens amp
Loeff They handle on a completely voluntary
basis all the legal work and donations to the
Nina Foundation Mail infoninafoundationeu
ask for the Alliance Agreement (in English) and
you can mail us all your questions
We are united -) and more countries are
welcome to join
Wish you a great 2014 Super exiting
WWWANGELMANTODAYCOM January February 2014
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Behaviors are observed in many
forms such as blinking an eye
waving a hand saying ldquoHirdquo or
walking Most people do not look at
these behaviors as a ldquobehaviorrdquo
because they are automatic for most
people Unfortunately society has
always associated ldquobehaviorrdquo with
negative actions Letrsquos start to
think differently Social significant
behaviors are behaviors people
produce that are meaningful actions
that are observe in many forms that
are present in society This may
include decreasing
maladaptivestereotypic behaviors
andor increase appropriate learning
and social behaviors
Most research in ABA relates to
individuals who are diagnosed with
Autism Spectrum Disorder (ASD)
However like individuals with
ASD social communication and
behavior deficits are also evident in
children with AS In the past ASD
and AS were perceived as very
similar disorders Although
research is limited in using ABA
with children with AS there are
two studies (Summers J amp
Szatmari 2009 and Summers J amp
Hall E 2008) that show
evidence that select principles
of ABA are effective educating
a child with AS These
procedures included discrete
trial shaping chaining
reinforcement and task analysis
of skills (Summers J amp
Szatmari 2009) Summers J amp
Hall E 2008 investigated the
correct implementation of ABA
teaching procedures by parents
with AS using an ABA skills
training manual The results of
this study showed differences in
results across 4 parents Two of
the parents showed
improvement in responding
across 4 of 5 domains one
parent did not demonstrate
change and the last parent had
mixed results that may have due
to the childrsquos disruptive
behavior according to the study
Even though there is limited
research on applying the ABA
methodologies there is
sufficient evidence to show that
educating a child with AS is
effective
As a professional who is not
only educated in ABA
methodology I am also a
teacher who applies these
principles on a daily basis A
few months ago I had the
opportunity to meet an
extraordinary young boy named
Max Max is diagnosed with
AS Maxrsquos mother Sybille
requested me to work with her
son using ABA procedures
After I evaluated Max it was
certain that we needed to work
on sitting at the table and the
When educating children with
Angelman Syndrome (AS) many
parents look for the best schools
that have teachers with extensive
experience working with children
with special needs The programs
that the parents observe are
classrooms that educate children
with different disabilities These
classrooms are categorized as
Multiply Disabled (MD) These
classes are always perceived to be
the ldquogenericrdquo solution for children
who possess deficits that are
difficult to address in other
classes With saying that these
classrooms can be very effective
for most children However one
type of educational setting that is
overlooked is a classroom that
implements the principles of
applied behavior analysis (ABA)
ABA is mostly associated with
the field of autism ABA is the
science of applying
experimentally derived principles
of behavior to improve social
significant behaviors (Cooper
Heron amp Heward 2007)
Before we go any further letrsquos
briefly define what ldquosocial
significant behaviorsrdquo are and
their function To do so I am
going to breakdown the term in
the simplest form Social means
relating to people or society
Significant refers to having
meaning However when the
word ldquobehaviorrdquo is mentioned
most people think of maladaptive
or stereotypic behaviors such as
hitting spitting kicking or
repetitive motorvocal behaviors
In reality everything we do is
considered a ldquobehavior
ABA Therapy ndash Applied Behavior Analysis
By Mark Mautone MA ABA
WWWANGELMANTODAYCOM January February 2014
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
ability to maintain appropriate use of
his hands while sitting such keeping
hands down when working Max has a
history of swiping items off the table
and had difficulty sitting His program
was only focused on
those behaviors Those two behaviors
are pre-requisites to learning and
attending I work with Max once week
for an hour I am happy to report that
by the 6th week Max was able to walk
to his work area and sit down His
reinforcement is delivered for
producing the target behavior with
preferred videos on the iPad for
keeping his hands down We are
moving into the phase of
programming which will be
introducing educational programs
using ABA principles
ldquoThis article was written two months ago
Today Max is able to start the timer on the
iPad chose his activity finish it and go to
the next one We started proloquo2go
program and he loved it He is learning
quickly with his ABA therapist and I truly
believe there is no particular age to start
ABA therapy If you have a great therapist
you can do miracles with your angelrdquo ndash
Sybille Kraft Bellamy
Mark Mautone MA ABA
ITPADD
Educational and Technology Consulting
Markitpaddcom
wwwitpaddcom
Follow me on Twitter ITPADD
WWWANGELMANTODAYCOM January February 2014
Thank you for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
top related