P. O. Box 29422
Indianapolis, IN  46229
 
 (317) 876-0600
(800) 526-6618


info@indianaepilepsyfoundation.org

Not another moment lost to seizures


Our Mission Statement
The Epilepsy Foundation of Indiana leads the fight to stop seizures,
find a cure and overcome the challenges created by epilepsy.

 Indiana Teens Find Many Ways
To Advocate For Epilepsy

Hoosiers attend Teens Speak Up/Public Policy Institute in D.C. --
This annual event brings together teens and their families living with epilepsy from around the country to learn about legislative issues affecting them and have the opportunity to share their stories with their congressional representatives.


     In attendance from Indiana this year (as seen at right) were Jennifer Abramson and her son Drake, as well as Marc Parker, our EFI Affiliate Advocacy Leader and Sandy Pollard, EFI Executive Director.
     
     A highlight of the trip was the chance to sit down and talk with Rep. Peter Visclosky about the medical marijuana issue.  As a result of Drake's visit, Rep. Visclosky agreed to co-sponsor H.R. 1538, the Compassionate Access, Research Expansion, and Respect States (CARERS) Act of 2015. This legislation would help further research into the medicinal benefits of cannabis for treating epilepsy.


     
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Colts fan advocates for epilepsy awareness -- Ali Heath, a 16-year-old from Fishers, has been an Indianapolis Colts fan since she was a little girl. She is shown below posing with two Colts cheerleaders at the 2015 Indiana Flower & Patio Show.
     
     After she was diagnosed with epilepsy two years ago, she realized what an impact seizures can have on life and decided to do something to help raise awareness by writing to Colts owner Jim Irsay.

     
     In her letter, Ali asked if the Colts could support epilepsy for one game in November by wearing purple ribbons on their shirts.

     
     As Ali explains,"It's hard not being able to go to concerts, movie theaters, school dances due to the  flashing lights, even music causes me to have seizures. I have tried many medications before I had a VNS implant and I believe it has been helping. 

   
      "I know that each individual will win their battle against epilepsy if they believe in themselves and have the courage to keep fighting," she adds. "Don't give up on yourself or the person you love, stay strong!"

     
     Let's hope Jim Irsay will honor Ali's request and that we will see those purple ribbons on the football field in November!

UPDATE:
In June, Ali received a letter of reply from Pete Ward, chief operating officer for the Colts. Although he couldn't promise a game dedicated to raising epilepsy awareness, he did say the Colts would make a donation to the epilepsy foundation and host Ali and her family at a home game this fall.

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Student's concert project benefits EFI -- When Kathryn Burke of Plymouth was 6 years old, she started having absence seizures. After 2 years, they stopped on their own, and she has been seizure-free for the past 10 years.
     
     But she has never forgotten that time in her life, and for her student leadership practicum at Culver Academy, she chose to coordinate an Epilepsy Awareness Benefit Concert in January at the school.


     Twelve local performers participated in the concert, with each one stating a fact about epilepsy after their performance. In all, Kathryn was able to raise $100 to benefit the Epilepsy Foundation of Indiana.
     
     We applaud Kathryn (shown at right at EFI's 2014 Community Awareness Day) for her generous donation and wish her continued success in the future.






News & Notes

Free VNS Programs Coming Up in Fort Wayne, Mishawaka -- Join Dr. John Collins on Thursday, July 30 to learn more about seizure types and treatment options including the vagus nerve stimulator. The program will take place at Biaggi's Restaurant, 4010 W. Jefferson Blvd. in Fort Wayne, starting at 6 p.m. Complimentary dinner and parking provided.
     A similar program will take place with Dr. Kevin Kristl at 6 p.m. on Thursday, Aug. 20 at Papa Vinos Restaurant, 5110 Edison Lakes Pkwy. in Mishawaka. Complimentary refreshments and parking provided.
     For more information on either of these programs, call 1-800-332-1375, ext. 2729. Sponsored by Cyberonics.
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Let's go Krogering! -- The Epilepsy Foundation of Indiana is now participating in the Kroger Community Rewards program. All you have to do is register your Kroger Plus Card, and you can help us earn dollars back from Kroger whenever you scan your card at the checkout.
To sign up, use this link and our organization number -- 62190. If you do not currently have a Kroger Plus Card, you can get one at any Kroger customer service desk.
Thank you for your support!

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Ask Congress to Support Research and Innovation -- Congress is considering bipartisan legislation, the 21st Century Cures Act (HR 6), which would accelerate the discovery, development, and delivery of lifesaving medical treatments by bringing the nation’s health care innovation infrastructure into the 21st Century.
     Ask your Representative to cosponsor 21st Century Cures so it can get to the House floor for a vote!
     HR 6 would authorize $10 billion over a period of five years to establish an innovation fund at the National Institutes of Health (NIH), and propose increases in overall NIH funding. The bill would also further incorporate the patient perspective into the drug development regulatory review process at Food and Drug Administration (FDA); modernize clinical trials; remove barriers to greater research coordination; and create incentives for developing therapies for rare conditions.

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Caregiver Survey Opportunity
-- Dr. Sandra Helmers of the Emory University School of Medicine and her team are conducting a survey of people who care for someone with epilepsy to understand their experiences and identify the needs of the epilepsy community.
     The online survey should take less than 30 minutes to complete. You may take breaks if needed -- just write down your "unique survey ID" at the beginning and use this number if you come back later to complete it.  All your survey answers will be confidential.

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