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 bdecker@epilepsyiowa.org 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