Consensus LaunchWeekend Camp 2013

Max Book LaunchFoodie Fun!

in this issue...

news and views from

MARCH 2014

Max Appeal’s largest donation ever!

The story from Squire SandersSolicitors in Birmingham p10

in this issue...

inthe news...inthe news... AROUNDUPFROMMAXAPP

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MEETINGS & CONFERENCES..............4

MAX APPEAL OFFICES...............................5

MAX’S AUNTY IN PRINT!.....................5

WEEKEND CAMP.................................6-7

PARENT’S AUTISM WORKSHOP........8

CRUMBALL RALLY...................................8

GREAT NORTH RUN..............................8

NEW TRUSTEE..........................................9

SUPER SQUIRE SANDERS!.............10-11

22Q AT THE ZOO...........................12-13

FOOD FOR THOUGHT.......................14

MARY COOKS UP A STORM.............15

Note from the editor: This newsletter has been ‘in production’for quite a while.. eons, in fact! So it gives you an idea of the typesof things that Max Appeal has been getting up to and a few of theamazing things that Max Appeal supporters have done… but wejust couldn’t get EVERYTHING in. So apologies to those whose effortsare not recorded, we really do appreciate everything that people do!

WHAT’S INSIDE...

22qsocietyOfficially launched on 22nd January 2014(had to be a 22nd !!). This is a societyfor academics, researchers, medics andother professionals who have an expertiseor interest in 22qDS.

Max Appeal is helping the founding groupof “22q Glitterati” to establish the societyas an independent charity and supportits administration/secretariat functions.

www.22qsociety.org

Family registration for the 9th BiennialInternational 22q11.2 Syndromes MeetingWrites Damian Heine-Suner:

The 2014 Conference Organizing Committee Cordially Invites Families to Register forThe 9th Biennial International 22q11.2 DS Meeting; at PALMA AQUARIUM in Palma deMallorca, Balearic Islands, Spain - From June 21st – 22, 2014.

Following a similar scheme as previous meetings, the International Family Program willinclude scientific sessions and short courses given by international experts, as well asworkshops addressing the needs of children, teenagers and adults with 22q11.2 deletionsyndrome and their families (simultaneous translation provided). In addition, there will beplenty of fun activities that will take place in the wonderful venue of the Palma AquariumMeeting Center (palmaaquarium.com/eng/) at Palma Beach. It will be a great opportunityfor families from all over the world to meet and get to know each other. We want tocreate the environment and the atmosphere to promote interaction and synergies amongstus and generate fruitful collaborations and friendship. We want this to be a meeting thatboth specialists and families will enjoy. We look forward to seeing you in Palma!.

FOR MORE INFORMATION • TO SUBMIT AN ABSTRACT • TO REGISTER ONLINE• TO MAKE A RESERVATION • PLEASE VISIT WWW.22Q11MALLORCA.COM

A key event in MaxAppeal’s history…It might well seem that a consensus document isnot really a great deal to make much of, butthen.. stop and think! Max Appeal managed toget about 60 clinicians, experts, academics andother professionals to agree? How did that happen?Well I can reveal to you that it wasn’t easy, forus or the authors of the chapters. It really wastough going for Dr Dinakantha Kumararante(known to all as Kumar) who was the brainsbehind the idea and chief co-ordinator, it wasn’tall a barrel of laughs for Jeremy Allgrove either,as he pulled together the bibliography.

Mind you, Jane Brown thought it made wonderfulbedtime reading!

Furthermore there were plenty of people whotravelled many miles for the event, Dr Anne Bassett,psychiatrist University of Toronto, Dr Anne Swillen,Leven University, Dr Donna McDonald-McGinnChildren’s Hospital of Philadelphia, Dr DamianHiene-Suner from Mallorca, along with Dr Diewirtde Waart, in Cambridge and Dr Merel Pannbakker,Cardiff, Dr Julia Cadogen Bristol, Dr ClodaghMurphy from the Maudsley and GOS.

Our eloquent speakers engaged the audienceinto spellbound silence!

NATIONAL CONSENSUS LAUNCHTHE LAUNCH OF MAX APPEAL’S NATIONAL CONSENSUS DOCUMENT ON 22Q11.2 DELETION AT TEA IN THE MEMBERS’ DINING ROOM ON MONDAY 15TH APRIL 2013

Tracey said a few days later, “I am trying tocome down to earth again. It was brill. Fab.Loved every minute. xx”.

Sarah closed her presentation with this plea:“Today it is our turn to make you think about 22qwith the help of this Consensus Document.Tomorrow it is your turn to spread the word andhelp people understand. Tomorrow it will be timefor society and government to realise that sometimesit is just too difficult to seek gainful employmentwhen you have a syndrome such as 22q, or whenyou are bringing up a child that needs your helpbecause they cannot help themselves. Tomorrow itwill become a realisation that the children with 22qare all turning into adults and need help to be ableto have an adult life. Tomorrow it will be time tocommission a proper study into the long-termeffects of 22q on adults. Does tomorrow evercome? Max Appeal and their sponsors and webelieve it should and will – but only with yourunderstanding and help.” (Max Appeal likes this!)

Finally it was time for Julie Wootton, one of thefounders of Max Appeal to say her bit (or lot;she can really waffle). Julie first spoke to Donnain Philadelphia just before Christmas 1998 whenMax was not doing so well in intensive care.Max Appeal came to life following the death ofher son Max in 1999. Then in 2002 while researchingimmunology information she came across somefabulous cartoons created by Hilary Joyce.Hilary introduced her colleague Kumar to MaxAppeal. Kumar thought it would be great thingto do a consensus document (a what??)… andin this bizarre world such small twists of fateshape a huge future…

Julie presented glass trophies to Max Appeal’sbiggest fundraisers of 2012; Martin Silvester, Ed

Coppinger and MarkBradbury, who thendecided to joinforces withSquire Sanderssolicitors...whohave chosenMax Appeal tobe their charity ofthe year for 2013.It can’t be over-emphasisedthat fundraising is vital to the lifeof small charities. Our fundraisers are very special to us!

Mark Tripp said: “The best part for me was seeingSarah and Tracey make their speeches, they gaveme encouragement that Adam can achieve whateverhe wants to in life. They were incredibly brave andtheir speeches were very moving.”

Andrew Selous MP said: “I have just put downtwo Written Parliamentary Questions to theSecretary of State for Health, one to find out thenumber of people in England with 22q DeletionSyndrome compared with the number of peoplewith Multiple Sclerosis and Huntingdon’s Diseaseand secondly I have asked whether he will adoptthe National Consensus Document as NHS policy.I hope that replies will be helpful in makingprogress on this important issue.”

Max Appeal has registered its interest with thesecretary to the House of Commons regardingour wish to establish an All Party Group (knownas an APPG) for 22q Deletion. If you think youcan get your MP on board with this then let usknow. Send a copy of the consensus documentto your LEA, talk to your clinical teams about it…spread the word!

NATIONAL CONSENSUS LAUNCH

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It has been all hands to the pump at getting as many consensus documentsinto the sweaty grip of receptive (or otherwise) professionals! We haveattended as many meetings and conferences as we can… and we havedished out thousands of copies:

Rare Diseases Day – 22q being the most common of these, wethought it might attract a bit of interest! This year new trustee, SarahGoodyear attended the Scottish event in Edinburgh and Julie Woottonspoke at the event in Belfast with Gillian Cassidy, who is striking up agroup there and Anne Lawlor of 22q Ireland… made for an impressiveline-up of 22q support and highlighted the need for joining together.

Eurordis (European rare disorders group) – they have a panEuropean platform with auto –translate called RareConnect, sadly it’snot technical enough to cope with the consensus document, but worth

flagging up Max Appeal’s profile. Anyone who thinks they could moderatesuch an on-line group should get in touch.

BCS (British Cardiovascular Society) – Julie attended this, she is also aboard member for Cardiovascular Care UK which is the patient arm ofthe BCS. She hopes to see rehab being available for congenital patients,as it is for coronary.

Birmingham Children’s Hospital, Cardiac Workshop –lots of useful information about complex conditions and treatments, andalways useful to maintain relationships with cardiac teams because, as weall know, they are frequently the first people who will see 22q babies!

VCFSEF (Velo-Cardio-Facial Syndrome Education Foundation) in Dublin– Claire Hennessey and Julie Wootton spoke about accessing reliableinformation, the information standard, and (of course) the consensusdocument as being rock solid!!

General Paediatricians regional meeting in Cardiff – surprisingly many ofthe paeds there had not only heard of 22q deletion but also Max AppealAND the consensus document, one said “Oh, I’m so glad I’ve got holdof a copy of this.” However another said something along the lines of: I don’t need to know this, I see quite a few patients with this conditionbut I think the care they receive from me is more than adequate. (Ed. You can’t win them all!

Manchester Medical Society Paediatrics Club meeting –again, it is important to try to get the consensus under the noses of thesevery strategic members of the medical team; if they know the conditionthey know what services your children should be accessing.

Genomics England – this is a project of David Cameron’s to try tosequence the DNA of 100,000 people within the UK… there are lot ofdifferent ways of looking at this sort of project, morally and ethically, andall the knock effects of this level of genetic knowledge of individuals…BUT they should know about 22q for sure!

BCCA (British Congenital Cardiac Association) in Edinburgh – loads ofconsensus documents went but it has to be said that possibly Cadbury’shad more to do with it than Julie Wootton’s eager charm. (Ed. What??)

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UKPIN (UK Primary ImmunodeficiencyNetwork) meeting in Liverpool – thiswas a really good event; Hilary Joycewas invaluable here as her scientific andimmunology colleagues literally flocked roundthe Max Appeal stand to catch up with her and so provided a captiveaudience for Max Appeal and the consensus document.

Obviously that isn’t all the meetings and what have yous that have beenattended by Max Appeal over the last year, but hopefully it gives you aninkling of what we are doing behind the scenes on your behalf. It is prettyrelentless and HUGE thanks has to go to the trustees, volunteers andour part-time staff because everyone is working their socks off.

spreadingthe news!spreadingthe news!

NEW!MAXIBEAR

Thank you to Ruskin Glass Centre in Stourbridge, and Elizabeth Wood in particular for supportingMax Appeal and allowing us have space on a VERY peppercorn rent! It is now all up and runningand Steph is enjoying her new cosy work environment!

We are so happy to be part of the Glass Centre environment it is perfect fit for Max Appeal, andit has to be said the facilities are marvellous and the atmosphere is very welcoming and calming.

HELLO! (Writes Steph)

My name is Steph Jasper and I’m your happy helping administratorfor Max Appeal. I’m the lady who tries to make sure we onlyever allow real people and families joining our Max Appealweb pages as we don’t want advertisers or scammers. I alsokeep the membership database as up to date as possible (I askyou please to let me know when you move home or changeemail address) and I’m the one who sends out any requestedConsensus documents and information in the post.

I also try and help out our other trustees and members when they areorganising any events, such as 22q at the Zoo and local member meet ups.

We have just opened a new office in a lovely little warm portakabin at the Ruskin Glass Collegesite (www.rmt.org/glasshouse) Glasshouse College in Stourbridge is one of three independentspecialist further education colleges operated by Ruskin Mill Trust, providing Practical Skill TherapeuticEducation for young people aged 16 to 25 years who have a range of learning difficulties, including autistic spectrum disorders and behaviours that challenge.

I have a little boy called Jack who will be 5 in May who was diagnosedwith DiGeorge by amniocentesis before he was born. As theyhad picked up a major heart defect at the Feotal medicine unit atBirmingham Women’s Hospital. I remember lying on the bed seeinga Max Appeal poster wondering “what’s that all about, won’t beanything to do with me or my baby”. How I was wrong.

Donna McDonald-McGinn from Children’s Hospital of Philadelphiatried her hand at blowing glass when she took a tour at RuskinGlass Centre. Thanks again to Elizabeth.

www.ruskinglasscentre.co.uk

OUR BRISTOL BASE...We’ve been fortunate to have being renting an office at Coombe Lodge near Blagdon (just southof Bristol airport) for a few years now. All the stalwarts at Max Appeal will be very familiar withClaire Hennessey and her tireless efforts to raise money and awareness of 22q and Max Appeal…and do loads of other stuff as well!

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NEW SPACES!

This is a really lovelybook written by Max Lechner’s Aunty Nuckywith beautiful illustrations and endorsed byprima ballerina Darcy Bussell no less! The booklaunch was in the Lechner’s home town of Aberdeenand was very well attended, including Max Appealtrustee Sara Goodyear.Max was a lovely boy whose life tragically endedfar too soon and this is not only a very touchingtribute to him but a really nice story of a veryengaging chap who warmed the hearts of everyonewho was fortunate enough to know him.

Get in touch if you’d like a copy!

NEW!MAXIBEAROur fabulous new desk buddies are available to purchase...an essential assistant for every office!

Some people might think that woodsman crafts is not a good thing for us to

encourage.. I mean, sharp knives for whittling wooden tent pegs, archery and

shooting lessons… what could possibly go wrong???

Actually, nothing did go wrong, thanks to impeccable planning by Caroline

and Simon Lonsdale and fabulous leader Super-Guy. In addition grass-sledging

is great, sumo wrestling should be banned (ed. if I get beaten again), the nettle

fritters were wonderful, everyone enjoyed setting fire to bits of wood to

cook things on, then there was a lovely walk in the woods with an opportunity

to poke things with sticks and take on an assault course that would be a complete

run-away-from job at school but no-one was there to laugh, well nasty laugh

because we were all in tears at the soggy trainers… everyone took their turn at the

washing up bowl (good training for trustees, that is!!) … and a few bottles of wine put

the grown-ups in a very happy frame of mind in the evening round the camp fire. Stunning photos...

thanks to the Harvey-Ascrofts!

The point of all these events is to have fun, do

something you wouldn’t do otherwise (ed. like

sleep in a tent!!), get to know other 22q families

and for the younger ones to fall in love…

Don’t miss out on the next camp session, visit www.maxappeal.org.ukfor the details.

weekendcampweekendcamp

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PAWS (Parents Autism Workshops and Support) has been set up by Dogs for

the Disabled partnering with the University of Lincoln and the National Autistic

Society, to bring together the parents and carers of children with autism to

share experiences and to explore the helping potential that a pet dog might

have within their family.

Here’s what they say...It’s been observed that there is a special chemistry between the dog and the child,

the dog having an incredible calming effect when a child with autism is angry,

anxious or distressed. They can distract a child away from disruptive or dangerous

behaviour and create a space for the parent or carer to take control of a situation.

These observations have led us to believe that a well-trained family pet dog can

have a massively beneficial impact.

Throughout the UK, parents now have the opportunity to attend a series of three, one

day workshops run by Child Development and Dog Training & Welfare Project Workers. Workshops

cover a range of topics, from selecting the right dog for the child and family, to family involvement,

and practical ways in which the dog can help the child’s development. Following the workshops, the

PAWS team offers ongoing support for all families enrolled.

The PAWS team welcome any applications from families affected by 22q Deletion Syndrome.

Please visit http://paws.dogsforthedisabled.org/ to see if there are any workshops near to you.

Says David Reeves: “Taking part in a challenge event is a great way to support Max Appeal.Not only can you fulfil life-long ambitions, but you also raise money and awareness for thecause. The more bizarre the challenge, the better press coverage you will get and themore money you can raise! I recommend it to anyone!”

Not heard of Crumball Rally? The idea is to buy an old banger, paint it up and thendrive it through Europe.. “Buy it, Paint it, Thrash it, Trash it”. See all of David Reevesand Mark Sandercock’s fun at: www.facebook.com/CrumballRallyforMaxAppeal

crumball rally

GREAT NORTHRUN...

WELCOME TO NEW TRUSTEE

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I am Sarah, married to Simon, a mechanical engineer

and keen runner, who is unfortunately having to

have a year off running due to other commitments.

I am mum to Matthew, aged 15, Daisy, aged 10

(who has 22q DS) and Millie, aged 8. We live

north of the border, in Aberdeenshire, although

I originate from Warrington. I used to work as

a physiotherapist, but after the birth of Millie,

around the time of obtaining Daisy’s diagnosis,

I never went back to it after maternity leave. I have

worked as a registered child minder for the past

6 years, a job that enabled me to be at home for

Daisy and my other children and be able to go

for the numerous hospital appointments. Four

months ago we moved out to the country with

our dream of the good life, planning on keeping

chickens and ponies and growing veg, so I have

stopped working as a child minder and we have

spent the summer building a hen house… it’s a

very upmarket one!

It was a terribly long drawn out process getting

a diagnosis for Daisy. She had been extremely

poorly with a large VSD, which was repaired

when she was 5 months old and I was told I

should enjoy her and not worry about things

like DiGeorge when I pushed for the FISH test.

They had told us that during surgery, they discovered

the thymus gland was absent, so of course I trawled

the internet and soon came up with the diagnosis

of DiGeorge when I fed in the symptoms, heart

defect and absent thymus. Eventually she was

tested and was found to have the deletion. It

was devastating….all the sites I had been looking

at painted such a black picture and I was convinced

she would succumb to an infection and we

would lose another child (my second baby, Robert

had been stillborn). Suddenly Max Appeal’s

website came into my internet search and this

was the great beam of light & hope that I had

been searching for. The information was so helpful.

As ever we had loads of keen runners, all chomping at the bit to pound the roads between Gateshead and South Shields. 22 runners completed thecourse raising a whopping £13,000. New phrase: “only mad dogs and Englishmen go out for a Geordie run!” Seriously it’s a great weekend,and this year we were again able to buddy up with Children’s Heart Federation, so we got to go on a boat trip up the Tyne (we didn’t crash even withArchie behind the wheel) and Hartly (CHF mascot) came along... actually Archie Wootton couldn’t wait to get inside the pink costume and turnedout to be a natural performer.. BUT the head is difficult to see out of, and rumour has it that Hartley was occasionally spotted waving enthusiasticallyto empty pushchairs… (utterly hilarious!).

If you want to do a half marathon or even feel like you do one of those and then turn round and run back again ie a full marathon, or indeed any other test of endurance (and idiocy) get in touch and Max Appeal will provide you everything we can to help you achieve your target. Email Paul@maxappeal.org.uk

With the handbook (no consensus document at

that stage) and a very helpful GP, we were able

to wade through the many tests and checks that

Daisy needed, I would arrive at the practice

with, “I’ve been reading and I think Daisy needs a

kidney scan/immunological assessment/hearing

test…” and the GP found the appropriate

consultant. He also discovered the 22q clinic at

GOSH and referred us, such a relief to see health

professionals who didn’t need me to explain

what the condition was.

Most of us complain about feeling isolated, and

that was so true for me. It seemed particularly

bad up here, no one seemed to have a clue what

DiGeorge was. Julie Wootton then told me

about a family that had moved up to Aberdeen

from London, their 4 yr old son had 22q, and

Julie encouraged me to get in touch with them.

This I did, and what a wonderful experience

meeting Max and the Lechner family was. Max

was a delightful boy, so friendly and bubbly. He

arrived at our front door with a “Hi, I’m Max”

and shook our hands accompanied with such a

cheeky grin…. for the first time, we felt that

things may not be so bad. His mum was full of

helpful advice and I felt so much more positive

after that meet up. Many of you will know that Max

became very ill Christmas 2011, and devastatingly,

he died…we will never forget him.

Daisy and I attended a Max Appeal conference

at Bristol. It was great to hear the professionals

speak about the condition, but equally good to

meet other families affected by it, and to see

our wonderful kids mixing together and having

a ball. A couple of years later, we were fortunate

enough to spend the weekend at Keilder at an

outdoor centre with about 7 other children with

22q, a weekend

organised by Max

Appeal. I still see this

as one of the best

weekends I have ever had,

sharing info with the other parents, seeing the

kids bond so well, being so relaxed in that sort

of safe environment and generally all of us having

a good laugh. Once again I realised the value if these

meet ups, both for the children, and their carers.

Although the last 10 yrs have been extremely

difficult at times, lots of low patches and I’m

sure there will be many more trials to face,

I know that I could have not got through so well

without the support and advice from Max Appeal.

I felt that I would like to give as much back to

the charity as I was able. Realising the value of

meeting up with other 22q affected families,

I have tried to organise some meet ups for

Scottish families. We have been to Edinburgh Zoo,

10 pin bowling in Aberdeen, Dundee science

centre and are off to the Yard (a play centre for

youngsters with additional needs) in Edinburgh

on 1st Sept.

Having a battle to get Daisy diagnosed and then

to get the necessary tests/treatment etc has

made me realise how worthwhile the consensus

document is, so I am very keen to get it “out there”

and ultimately for there to be a multidisciplinary

22q clinic in Scotland and I will do all I can to

help this be achieved.

22q has changed my life. There have been low

points but highs as well, and although it’s taken

a lot of getting used to, it’s not so bad and the

people I have met here have been very special.

WELCOME TO NEW TRUSTEE Sarah Goodyear

fundraising

RUN!

A SPECIAL REPORT ON OUR CORPORATE SPONSORSSQUIRE SANDER’S SOLICITORS IN BIRMINGHAMThis is a company that likes to roll their sleeves up and get down to business!

First off, the dinner at Opus restaurant in Birmingham was a ‘blast’! The bloke from AcmeWhistles blew us away with his amazing history of iconic whistles, ie the ones everyoneknows; from policeman’s whistles to the toot-toot of the US trains…quite incredible. BUT what was more incredible was the amount of money raised, which was about £10,000!

fundraising

They also like running at Squire Sanders, so a

team was entered for the Great North Run and

a few hardy souls also survived the Birmingham

Half Marathon (thanks to EC Harris for the

generous continued partnership and use of their

tremendously well placed office in Baskerville House.

The Great North Run is always a fabulous experience

(ed. particularly if you’re not running; someone has

to cheer at the finish

line, don’t they??)

MUDDYCHALLENGEWhat’s this all about? Errrm… it’s sort of a very

silly 10km assault course where lots of people

run up and down hills, wade and crawl through

mud, get scratched by barbed wire, electrocuted

by by cables in the ground, slide down soapy

slides and swim through trenches filled with icy

water. Really, can you imagine a better way to

spend a Saturday morning??

Here are a couple of before and after shots to

give you a bit of an idea of what these loonies did!

RUN!

OUR THANKS TO EACH AND EVERY ONE OF YOU

!

SHWAPPINGTake your unwanted designer gear, pay a small

fee, buy some cakes, get your nails done, have a

drink and take home something new for your

wardrobe for free… SUCH a great idea!

SNOWDON...THE AFTERMATH!

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8On Friday 21st June, in support of Max Appeal, Sam Clancy, Ellen Inglis, Pam Kahlon, Rebecca Storer, Sophie Taylor, DanielCarlile, James Thorman, and Ben Tompkins (Known as “The Snowdon 8”) set out to conquer Mt. Snowdon (1081m) – THREETIMES in one day.” With 50-70mph gales and heavy rain forecasted, the advice to bring sunblock seemed hopelessly optimistic.

Nevertheless, a prompt 06:00am start beckoned and after a quick roll call, the Snowdon8 began their ascent of Rhyd Ddu (Rebecca is not on crutches at this point, for thosewondering, and James is not checking BBC Sport’s gossip column).

First ascent…conquered (Sebastien Vettel celebrations may need a little work…).We weresoaked to the skin (lateral/inverted rain tends to do that) and wind-beaten (gusts of 70mphturned out to be accurate) but making good time.

After double (triple) checking that the summit café was in-fact closed, we set off for thePyg track descent.

Powerful gales and face-splitting rain made for challenging navigation (even with a GPS)and the Snowdon 8 walk straight by the Pyg track, oblivious but happy to be descendingout of the cloud and the worst of the weather – march on, and on, and on, and on (prettymuch to the lake in the photo below).

Former mountain rescue team member claims this was “definitely rescue weather”.

Reach the bottom of what was clearly (in hindsight) not the Pyg track or the Miners track,as intended, but in fact the Llamberis path.

Despite having a reputation for being the “easiest” Snowdon route, with 8 climbing milesin the legs already, the Llamberis is not to be underestimated. On the lower half of the walk,objects in the distance never seem to draw nearer and towards the latter stages, the terrainveers up beyond the 35% mark in places and walking at a normal pace is impossible.Mentally and physically, this was a tough stage. (Ed. Is he hoping his jacket will act like wings?)

A sighting of Snowdon’s funicular train – a key indicator that the summit café would be open…

Arrive at the summit to find that the café is closed…for the day (two team members takethis news particularly well – see picture)! Sam (inexplicably) gets bitten by a dog – we’refairly confident that this appears in no Snowdon guide book. With morale bruised andhunger taking over (with nearly 13 climbing miles in the legs) a quick rest was taken beforesetting off to find the Pyg track and a place to eat which was out of the clouds.

Here, the most technical descent on the walk began. With the wind blowing, the cloudlow hanging and the approaching traffic consisting of anxious walkers in a race against time fortheir own challenges, the slippery mountainside made this a slow, patient and painful effort.

Located the Miner’s track and, once on this flatter and more consistent surface, managedto cover some good miles

Reached our final turning point (the Miner’s Track causeway) and headed home for thefinal ascent and descent. All manner of fatigue was developing at this stage (with theexception of Pam, who seemed to be getting fitter as the challenge progressed) and we wereprobably still too far away (approx. 7 climbing miles) to get overly excited. The returnclimb of the Miner’s / Pyg awaited…

Jubilation (?) as we reached the summit for the third and final time (wind almost swept 3team members away from the narrow platform of the top).

Reach the bottom of Rhyd Ddu. Tired, excited, relieved…hungry. Look at the distance travelled! “Fix!” I hear you cry? Absolutely not!!

Arrive at the pub.

SNOWDON...THE AFTERMATH!

06:00

08:00

08:01

08:05

09:00

10:15

11:45

12:30

12:45

13:45

15:30

18:00

20:00

20:30

All told, this was a fantastic challengefor a very worthy cause. The team

were delighted to have reached theirtarget of £1,000 so quickly and have

been really taken aback by the contin-ued generosity of those who continueto donate now. As of this morning, the

fundraising total stood at

£2,212.31(ed. Grief.. another 22!!)

Many thanks to all – here’s to the next one!

SNOWDONthe

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Max Appeal families did it in style again! It is truly heart-lifting to stand in a zoo and atlunchtime watch all the red t-shirts converging at the rendez-vous point!

Nine venues and over 300 people turned out… there’s not much to say except, thankyou to the local organisers, it is a test of endurance and patience to work through all thespread sheets, dish out the tickets and co-ordinate all those people… but it is a bit of aL’Oreal moment “because you’re worth it!” Great to catch up with people and have a natter.

I think one year we’re going to have to run a photograph competition because we havesome very talented dads! Dave Conroy, Nick Harvey Ascroft and Mark Tripp… just to name a few!

This year we are again supporting nine venues… and you can book your ticketson line and buy t-shirts, hats, bears and all sorts of things!

Look at the pictures and enjoy!

INTERNATIONAL AWARENESS

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This picture is the Farmer family and they are quizmasters! Two great quizzes…

lovely evenings and raising money to boot!

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DAY 22q AT THE ZOO

Chutney Toast withScrambled Eggs

Prep Time 5 minsCook time 5 minutes

1-2 medium eggs Dash of semi skimmed milk1 tbsp Chopped chives ( optional)1 thick slice wholemeal bread1 tbsp tomato chutney

How to make Place the eggs, milk and seasoning in a smallsaucepan.Cook, stirring occasionally until lightly scrambled.Stir in the chives. Spread the chutney on the toast and top withthe eggs.

Hint and Tip: Try any flavoured chutney or relishfor variation.

Vanilla Honey Yogurt Smoothie

Prep time 5 mins

100ml semi skimmed milk (could be full fat)150 g low fat natural yogurt25g bran flakes¼ tsp vanilla essence1 tbsp honey

How to make Place all the ingredients in a liquidiser or foodprocessor and blend until smooth.Pour into a glass and drizzle over some extrahoney to serve (optional).

Hint and Tip: For a smoother texture, soakthe bran flakes in the milk for 5-10 minutes inadvance. Even make the night before and storein the fridge overnight.

Marbled Fruity Porridge

Prep Time 2 minsCook time 5 mins

50 g porridge oats350ml semi- skimmed milk ( or full milk)2 tbsp fruit compote or pureeFresh seasonal fruit to serve eg raspberries.

How to make Place the oats and milk in a small saucepan andbring to the boil.Simmer for 3-4 minutes, stirring occasionally.Stir through the puree to create a marble effect. Top with fresh fruit to serve.

Hint and Tip: Try a variety of fruit purees orcompotes, mix and match with your favouritefruits and what is in season.

FOOD GLORIOUS FOOD!...We aim to put together some of yourfavourite recipes and tips for getting our children into good food habits.There are loads of suggestions around but I’m sure you all have tried and tested recipes which work well for your family.

Some parents report problems with getting their children to try different food textures and boosting calorie

intakes as being particular challenges for children with 22q Deletion Syndrome. Getting the balance right when

children grow up can be a challenge as managing weight can be a problem.

It would be fantastic if you could share your tips and recipes and send them to; Hilary Joyce at info@maxappeal.org.uk We would like to puttogether a recipe book and use it as a fundraiser for Max Appeal. Watch our website for further details.

We all know that mornings can be manic, but making time to start your day with breakfast provides you with the energy and fuel for the day ahead.

Eating a healthy breakfast kick-starts our metabolism, helps us concentrate better at school or at work because we’re not distracted by hunger, and

generally gets our day off to a good start. Here’s a few of quick and easy breakfast ideas from Shake Up Your Wake Up!

It’s always a challenge to find something different! The Children’sFood Trust have more suggestions for lunch boxes

http://www.childrensfoodtrust.org.uk/parents/schoolfood/packedlunches

Sometimes it can be a challenge getting children to eat what wewant them to eat! A varied and healthy diet should provide all thenutrients your child needs. Every day you should include:

Lunchbox Ideas - The change 4 life website has lots of ideas for healthy lunchbox options: www.nhs.uk/Change4Life/Pages/healthy-lunchbox-picnic.aspx

FOR MORE OF THESE BREAKFAST RECIPES VISIT: WWW.SHAKEUPYOURWAKEUP.COM

FOOD forTHOUGHT...

BACON CLANGER

BACON CLANGERSERVES 4 / COSTS PER DISH? £2.95

8oz Self Raising Flour (Sifted)

4oz Suet (Atora Light)

1 Large Onion

Bacon Pieces or Normal Bacon will do

Salt and Pepper

Mixed Herbs

1lb Potato’s (Mashed)

Green Beans, Peas & Gravy

HOW TO MAKE

1. First of all Sift the flour in a bowl then addthe Suet, mix with water until you get dough.

2. Roll out the dough into a round circle oroblong shape, cover with the onion and bacon,

season with Salt and Pepper and Mixed Herbs.

3. Place on baking parchment on the surface; I used fry-light or melted butter on the sheet

so that the pudding doesn’t stick.

4. Put the Pudding into a steamer for about 1 hour.

5. Once this is cooking, cook some potato’sthen mash them and serve with veg and gravy.

What makes your recipe original?This is an old dish that was used inWorld War II. It was a dish that myNan used to have as a young girl.

The Information Standard is a certification scheme for health and social care information. It hasbeen established by the Department of Health to help patients and the public make informedchoices about their lifestyle, their condition and their options for treatment and care. About50,000 organisations produce health and social care information for the public in England andsome people can feel overwhelmed by the volume of material and be unsure what to trust.The Information Standard has been introduced to fulfil the need for a 'quality filter' to helppeople decide which information is trustworthy. It provides a recognised 'quality mark' whichindicates that an organisation is a reliable source of health and social care information.

To gain its certification, Max Appeal had to demonstrate that the systems and methods it uses to produce itsmaterial are robust and result in material that is accurate, accessible, impartial, balanced, based on evidence andwell-written. Max Appeal worked with the very nice people at Capita (note: without the extra ‘r’ that PrivateEye keep slipping in) and the Royal Society for Public Health in order to achieve certification. Basically it was reallyhard work, thanks to Claire and Hilary for their perseverance.. and to Tessa The Assessor at Capita.

The work continues as now we have the processes in place we have to move all of our information leaflets(“products”) through the system, oh and modify our systems as there is now Information Standard version 2, justto keep everyone on their toes! YOUR input in this is essential as we need to have approval from “stakeholders”,the “target audience” (get me with all the lingo!) and relevant professionals. This is something we will be constantly working on, watch out for calls to ordure on Max Appeal’s social media sites and our web site.

What is theInformationStandard?

Mary put her cooking skills into practice with a group of young people from Max Appeal duringone of our teens activity weekends. A local catering school ran a cooking day for us and the groupplanned, shopped and prepared and cooked their recipes. They even got to eat and share the deliciousfood together. (Ed. Gossip has it that trustee Martin Kennedy was chief of quality control!)

Mary has continued with her catering course at school and next year she will take her GCSE incatering. Mary has been so inspired by her cooking experience! She has two fantastic achievementsto share…. (I’m sure Mum, Caroline is a big influence too, as we all know shemakes wonderful cakes and is a dab hand at camp cooking).

WORK EXPERIENCEMary explains... I did my work experience at the Officer’s Mess atInnsworth because I would like to go into catering when I leave school.

When I was there I was taught how to lay a table for silver service,I set up Breakfast and lunch things, washed all the tables downready to be ready for the next function, buffing all the brass, I wasalso taught to do the Silver dip, I was able to work on two functionsat the mess, I served food at lunch time and refilled the breakfast drinksand the tray. I had to be very smart and wear Black safety shoes, blackskirt which had to be just under the knee, white blouse and a black waistcoat, myhair had to be up every day. She also got offered a part time job there for next year when she leaves school.

MARY MAKES THE FINAL SIX IN COOKING COMPETITIONMary entered a cooking competition using her Nan’s wartime recipe and she was one of six finalists.The recipe has been published in a cookery book.

Mary attended the regional heats in September whichwere held in Devon. She went along supported by all ofher family. Caroline, Mary’s mum says ’ we had to be atthe show for 8.30am so it was going to be a long day, wenever got to see the judge until the afternoon’. Her judgewas Tom Parker Bowles. Mary made it through to the final6 but unfortunately she didn’t win, but she really enjoyedtaking part and this is why she wants to go into cateringwhen she leaves school next year’.

Well done Mary, such a fantastic achievement!

Mary shares her Nan’s wartime recipe….published in FoodGlorious Food.

This has got to be one for the Max Appeal recipe book!

Mary’s Inspired...taking her catering to a whole new level!

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IS PRODUCED BY MAX APPEAL15 MERIDEN AVENUE, STOURBRIDGE, WEST MIDLANDS, DY8 4QN

If you’dlike to challenge yourself and help us raise money for Max Appeal please let us kno

w!Contactclaire@maxappeal.org.uk and we’ll help make your challenge come true!

My son, Aaron Cook, was born on 7/10/98.We were told Aaron was born with hole inheart and that he had 22qdeletion/DiGeorgesyndrome. We were shocked but later told itwas hereditary and that it came from myself asI was born with hole in the heart too. We weretold that Aaron had a heart condition calledtetralogy of fallots, which he had repaired whenhe was 2 and had a stent fitted later when hewas 12. He was very ill after and was on a ventilatorfor 12 weeks but eventually pulled through. He eventually came home.

As he grew up he encountered a lot of problemsat school mainly with socialising and makingfriends as well. However, he carried on the besthe could. He showed all the symptoms of DiGeorgesyndrome but learnt to cope with them thoughhe still has a lot of issues. Now he is coping reallywell and I am proud of what he has achievedbecause of this.

He really enjoyed sport which I encouraged himto take part in. He tried a few different sportstennis, football and badminton. He didn’t stickto these though as he found fitness was a problem.

About 3 years ago he saw snooker on the tvand asked if he could have a go. I said yes andtook him to a local club and he fell in love withthe sport. He became almost addicted to thesport and improved quickly. We entered in a teamleague and in his first season won most gamesout of 56 adults which was a good achievement.

In 2010 a snooker centre opened in Gloucestercalled the South West Snooker Academy. Theyheld professional tournaments there whichAaron asked to watch. We went and met a lotof the stars who are on tv, too many to mention.

Aaron asked if he could start to play there andhave lessons so he did and his game improved.Unfortunately, when Aaron went to seniorschool the problems at school got worse andrecently he asked if he could be home tutoredwhich I agreed to. He is working hard now, hetrains 9 ‘til 5 at the snooker academy, does hisschool work in the evening and also goes to agym 3 days a week to help with fitness.

Snooker has helped Aaron with his confidenceand social skills and taught him discipline anddedication. He is an ambassador at the Academyfor functional snooker which is aimed at gettingyouths to play snooker and improve maths andEnglish. He is entering all the junior tournamentsthis year which involves a lot of travelling. Weare looking for a sponsor, as Aaron wants toplay snooker professionally when he is older.

The staff and coaches and all the people whoattend the Academy have really helped Aaron.He feels really safe there and because of this hisconfidence has grown. We would recommendyoungsters of any age or disability to take partin snooker. It helps in all aspects of life. Anyoneinterested please contact the South West SnookerAcademy, they are very helpful.

I hope Aaron’s story helps families to encourageyoungsters with 22q deletion/DiGeorge syndrometo take up sport and realise the future can bebright for youngsters to. If you want to followAaron’s success we will post all results on twitter account “snookerman2013”.

by Rob Cook, Aaron’s father

I just wanted you all to hear a positive success story to encourage all families with youngsters with DiGeorge syndrome/22q deletion.

SNOOKERMAN!Aaron Cook!SNOOKERMAN!

info@maxappeal.org.uk | www.maxappeal.org.uk | +44 (0)1384 821227

STOP PRESS!MaxAppealUK