epilepsy foundation iowa quarterly newsletter, fall 2016 · epilepsy foundation – iowa quarterly...
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Epilepsy Foundation – Iowa Quarterly Newsletter, Fall 2016
Greetings!
Fall is underway with numerous seizure education programs lined up around the state including the Iowa Public
Transit Association annual conference and our 4-hour Managing Students with Seizures program with all the
Des Moines and West Des Moines school nurses. We provide programs for school personnel, school nurses,
students in schools, agencies, direct support staff/caregivers, law enforcement, first responders, seniors,
daycare centers, bus drivers/public transit drivers, employment counselors/job coaches and other organizations.
We are funded to educate, so this is one of many ways which we utilize our funding/donations. Please contact
us if you are interested in a seizure education program, so we can get one lined up in your part of the state.
We will also be exhibiting at several conferences this Fall which include: the Iowa Rehabilitation Conference for
Employment, University of Iowa School Nurse Conference, Heartland AEA Resource Fair, Iowa NAMI (National
Alliance of Mental Illness) Conference, Brain Injury Alliance of Iowa Concussion Conference, Mercy Ruan
Neuroscience Conference, Iowa Developmental Disability Advocacy Conference, Care for Caregivers Conference
and more.
There are a couple events in October we would like to let you know about! The Leon Evans Cruise-In will be
on Oct. 8 in Fairfax, which is an event to raise money for epilepsy research at the University of Iowa. Our teens
with our Iowa Epilepsy Youth Council will be meeting at Williamson’s Pumpkin Patch in Ankeny on Oct.
22 from 3-4:30 PM to paint pumpkins purple for the EF #PurplePumpkinProject campaign and to participate in a
couple fun team building activities. Register your teen online. We hope to continue to grow and new teens
can join us!
We encourage you to attend our Iowa Seizure Smart Conference on November 5 at the Radisson in Coralville.
Our programs committee lined up the speakers/topics based on feedback from previous conferences. We have
an outstanding line up of speakers addressing a variety of issues as it pertains to epilepsy. We will also have
connection groups to help you get connected with others who are on a similar journey, a community resource
fair, a children’s education program with Studio E: art therapy and music therapy, as well as a pre-conference
session the evening before which includes a social, advocacy workshop and a short seizure education program
for caregivers. A limited amount of funding is available for travel stipends for those traveling over 50 miles to
the conference. Registration is live and more details are available online.
You can stay up to date on our programs & services, the latest epilepsy news and upcoming events by following
us on Facebook & Twitter at Epilepsy Foundation – Iowa and on our website at www.epilepsyiowa.org. In the
meantime, if you need assistance, please call myself at the main office at 515-238-7660 or Sloane in our
Eastern Iowa office at 319-359-8682.
Iowa Seizure Smart Annual Conference
#IowaSeizureSmart
Every year, we kick off National Epilepsy Awareness
Month by holding our Iowa Seizure Smart Conference.
Join us in Coralville November 5 for this year’s
educational conference for a chance to learn, share
and connect! A wealth of topics will be covered and
the day will close with opportunities to connect with
others facing similar circumstances.
In addition to the line-up of keynote speakers on Sleep, SUDEP, Genetics, Dietary Therapy, the latest Anti-Epileptic Drugs, & Cannabinoids in Epilepsy, personal testimonials will be shared from Iowans and break-out sessions allowing families and individuals to connect will fill the afternoon. Children have the opportunity to participate in Studio E: The Epilepsy Art Therapy Program throughout the day.
The evening before, the Epilepsy Foundation – Iowa’s legislative committee will host a
roundtable to discuss advocacy issues and strategies. Following, staff will share a brief seizure
first aid training for those who register for the pre-conference event. The entire conference is
free of charge and online registration is currently open with more details available on our website at www.epilepsyiowa.org.
Epilepsy Foundation’s Back to School Series
As the schoolyear started,
we were quite intentional
about sharing tips and
tools with you. Did you
check out the Back to
School series on our social
media platforms? We
shared videos on topics
from athletics to sleep as
it relates to being a
student and transitioning to the schoolyear.
We also have the most updated resources the National Office offers for working with schools
providing seizure information. Check out our School Resources online for even more useful tools in addition to the links below!
Seizure Action Plan
Seizure Observation Record
Questionnaire for Parents Seizure Recognition & First Aid
Trashmore 5k:
Dash to Bash Epilepsy Grows
Participant numbers continue to grow from
supporters of the Epilepsy Foundation through the
Trashmore5k in Cedar Rapids. We set another record
with the third annual event with over 420 registrants!
Our awards went out as usual and with impressive
times in the men’s and women’s categories. Check
out those times here. A new award emerged this
year recognizing team spirit. Cedar Rapids-
Washington’s Men’s & Women’s Cross Country team
shows up in drones every year with miles of smiles and their coaches accepted the award.
Additionally, we recognized the Top 3 teams based on size and funds raised! “All in for Quinn”
was included and accepted the award in their classic t-shirts surrounded and supported by
friends and family! Team Adam also ran in with amazing support and a team exceeding 70
members. Team Adam surround the Todd family who started the #Trashmore5k! Our Top Team
Award went out to Peyton’s Platoon from St. Olaf Iowa. Peyton’s family was featured in an
edition of Side Effects this time last year highlighting their hometown fundraiser: Tread the Trails. That event raised $8,000 this year which they presented to the Foundation at Trashmore.
In addition to the funds raised by teams and registrations, the support from our sponsors was
overwhelming. The list of sponsors is shown below except the must-be-mentioned: Hatch
Development Group & Stumpf Construction Services.
CamPossible
CamPossible! kicked off on August 8th at the newly refurbished
Camp Liberty in New Liberty, Iowa with 22 campers from all
over Iowa and Illinois. The 7-day/ 6-night camp is for youth
and teens with epilepsy and provided a safe, supportive and
fun environment for the campers to have some amazing camp experiences.
Campers had the opportunity to participate in activities like
archery, swimming, horseback riding, zip lining and canoeing,
just to name a few! In addition to the typical camp activities,
each night at camp brought a different after-dinner program.
The campers were entertained by a singer/songwriter, a magician, a caricature artist, and camper Olympics.
Camp was also a time for new friendships and bonding over
the campers’ experiences and challenges of living with
epilepsy. The support and care that the campers showed for
each other was quite impressive.
On a final note, CamPossible! would not have been able to
happen without an incredible team of volunteers, staff and
medical professionals. The camp staff enjoyed the week as
much as the campers, and the Epilepsy Foundation of
North/Central Illinois Iowa & Nebraska would like to thank all
of the volunteers and families that made CamPossible! a
fantastic experience. EF Iowa provided camp scholarships to
cover the registration fees for 3 campers attending camp, as
well as participating on site as counselors and helping out
wherever needed!
If you would like more information about next year’s
CamPossible!, feel free to contact the local EF staff.
Tie-dye t-shirts made by the campers and the girls’ zip-lining adventure are
pictured above.
Side Effects is a special feature
recognizing individuals who go
above and beyond as a side to
their day job or other roles in
positively impacting inidividuals
with Epilepsy. This edition’s Side
Effects recognizes Emily Cerveny!
Emily Cerveny of Des Moines, Iowa is featured in this edition of
Side Effects. She has become a
great contributor to the Epilepsy Foundation in Iowa since
connecting with us after her son, Keegan’s epilepsy diagnosis in
March 2015. Emily took ahold of
National Epilepsy Awareness Month in 2015 and organized a
Blue Jean Day at her employer: A-Tec Energy in Urbandale, IA.
Each participating co-worker was able to donate money in order to
wear blue jeans on any day of the
week. They also hosted a purple awareness day, and enjoyed all
purple foods, too! This coordinated effort resulted in an
overall donation of $1894. What a
great way to spread awareness AND raise funds!
Since, Emily has also been an
active member of the Iowa Walk for Epilepsy Committee for West
Des Moines. She helped to solidify
all of our great team mascots and dancers as part of the event. She
also helped to organize a volunteer check in, and brought
her family for set up and tear
down. Their team, Super Keegan fights the E! had 15 members at
the West Des Moines Walk. Emily is looking forward to being on the
Committee for the 2017 walk as well. We are grateful for her
participation in and dedication to
the Foundation.
Seizure Recognition & First Aid training
Iowa has a growing number of professionals informed about epilepsy thanks to our staff, our
connections, your referrals, our media presence, your requests and all of our collective efforts.
We are spreading more than awareness and expanding education which is vital for the safety
and well-being of our state and the communities in which you live. This season has brought some exciting opportunities for training.
In the Des Moines area, we gained access to some exponentially beneficial trainees. In July, we
conducted two trainings for the entire Social Security Income and Disability Income staff located
in the main office in Des Moines. In October, we will be presenting “Managing Students with
Seizures” to ALL Des Moines & West Des Moines School Nurses. This will result in over 100 nurses with updated information as a result of our organization.
If you have an audience you would like us to reach with one of the training options we offer, please contact us!
This event is a free, fun and family-friendly fundraiser in Fairfax! The money raised goes back to
support Epilepsy Research at the University of Iowa Hospitals and Clinics where Jack received
their care and achieved seizure freedom with the guidance of the Pediatric Neurology physicians.
Read more of their story here. Support the cause and cruise on in Saturday, October 8th! We'll be there!
National Epilepsy Awareness Month & other fall and winter social media campaigns!
#AimForZero
Every year, 1 in 150 people who have
uncontrolled seizures dies from
SUDEP.1 Accordingly, experts regard SUDEP as
the leading epilepsy-related cause of
death2; however, in a recent survey of more
than 1,000 people with epilepsy and caregivers
of people with epilepsy, only 18% of
respondents reported having discussed the risk
of SUDEP with their doctor.
When people with epilepsy and their caregivers
are empowered with information to understand SUDEP, they can take action to reduce risk of
harm. To respond to this urgency, raise awareness, and promote steps that can help prevent
SUDEP, the Epilepsy Foundation’s SUDEP Institute is issuing this Epilepsy.com Special
Report and launching a dedicated #AimForZero hashtag to facilitate greater discussion of
SUDEP. The 4 behaviors most recommended to prevent SUDEP are on the image above with
much more supporting information to come. Follow along with our #AimForZero posts
throughout October leading to SUDEP Awareness Day October 23rd.
#TalkAboutIt
Sharing stories is powerful. Share yours! Get
involved. Talk about it. Make a difference
today! See the stories of others here. Contact
Brienna Decker, Communications Coordinator
at EF-Iowa at [email protected] to
share.
#PurplePumpkinProject
This fall, people all over the country will be hosting Purple Pumpkin Parties to raise awareness about epilepsy and support the Epilepsy Foundation’ mission. Get involved by gathering your friends and family together and hosting a
fundraiser party to paint pumpkins purple and celebrate the season! Did you see the Iowa Epilepsy Youth Council has a Purple Pumpkin event planned? Register online! Register your celebration and receive a personal webpage to tell your story, raise funds, and spread awareness. Share photos of your friends and pumpkins on your social media accounts
using the hashtag #PurplePumpkinProject and ask people to donate to your webpage. Tag us in your photo. We’d love for purple pumpkins to flood our page over the coming weeks! When people see a purple pumpkin, they often ask, “Why is your pumpkin purple?” This creates an opportunity to start a conversation about epilepsy and help reduce the misunderstanding surrounding it. Learn more about the history of the Purple Pumpkin Project.
#ScareAwaySeizures
Beyond purple pumpkins, we have
another way for Halloween to be part
of launching the month of Epilepsy
Awareness. Snap a pic of yourself,
your friends, kids, pets, whomever in
costume on Halloween night! Post it on
our page or tag us on Facebook with
the hashtag: #ScareAwaySeizures! It’s
a fun way to take the thrill of
Halloween the night before National
Epilepsy Awareness Month launches
and use it to spread the word! Pictured above is the EF-Iowa Staff & Council participating already!
#NationalEpilepsyAwarenessMonth
Keep up with us through the month of November. We will have posts that
will be valuable for you to share on your social media channels so please
do! We will carry out the National Epilepsy Foundation’s campaigns, share
seizure first aid tips and stats and facts about epilepsy prevalence
throughout Iowa, the US and worldwide. Stay engaged, share education
and enlighten your friends, co-workers, classmates, friends and family by sharing the information we will gather for you!
#GivingTuesday
Toward the end of Epilepsy Awareness Month, you will see us launch a
new campaign. Have you heard of “Giving Tuesday”? It’s a social media
fundraising blitz that takes the place the Tuesday after Thanksgiving.
Following the spend-frenzy of Black Friday and Cyber Monday, follow
along and you can be part of the giving season with the Foundation. We
will talk about all there is to give: Time, Talent & Treasure and ask that you will share your #ReasonsToGive to @epilepsyiowa!
Do you have local plans for Epilepsy Awareness Month? We can help! Call us and let us know
how we can support you! If you’re looking for ways to spread awareness, stay tuned and keep in
touch with us online!
Save the Dates for 2017
March 7, 14, 21, 28 and April 4 & 11:
Studio E: Art Therapy, Des Moines 9-11am
March 16: Iowa Epilepsy Advocacy Day
April 22: Epilepsy Walk, West Des Moines
May 6: Epilepsy Walk, Dubuque
June 1-4: Camp You Can, Omaha
June 10: Epilepsy Walk / 5K, Iowa City
June 11- 17: CamPossible, New Liberty
September 9: Dash to Bash Epilepsy 5K Cedar Rapids
Thank you for your connection to & support of the Epilepsy Foundation-Iowa!
Stay connected and reach us when you need!
1111 9th Street, Suite 370 Des Moines, Iowa 50314 515-238-7660 www.epilepsyiowa.org