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.

Gala raises money for scholarship fund
     
Our 2015 Gala at the Ritz Charles was a big success, with excellent attendance and a strong fund-raising effort. A new scholarship fund for Hoosiers with epilepsy seeking financial assistance for higher education will be established as a result. Watch for further details about this program as they become available.

 2015 Gala Award Honorees
  Along with dinner, dancing and a silent auction, the Gala also featured awards for Lifetime Achievement, Medical Excellence, Distinguished Service, Community Outreach and Inspirational Youth.
Here are the 2015 Gala award winners, as seen left to right, posing with our celebrity emcee, "Subway" Jared Fogle:


Lifetime Achievement Award – Dr. Vicenta Salanova, director of the IU Comprehensive Epilepsy Program and professor of neurology at IU Health. She has also been involved in research trials concerning deep brain stimulation and has investigated a responsive neurostimulation device to help prevent seizures that was recently approved by the FDA.
Medical Excellence Award – Dr. Jodi Smith, director of pediatric neurosurgery at Riley Hospital for Children, where she founded the pediatric surgical epilepsy program and is regarded as one of the top pediatric neurosurgeons in the nation.
Inspirational Youth – Katie Strauss, a freelance videographer and editor who has lived with epilepsy since the age of 9. Over the past several years, she has created numerous short videos for the Epilepsy Foundation of Indiana in an effort to raise awareness about this condition.
Distinguished Service
 – Marc Parker, advocacy leader for the Epilepsy Foundation of Indiana. A tireless advocate for EFI, he has been especially involved in assisting Indiana families at the annual Teens Speak Up program in Washington, DC and in the family weekend camp at the Center for Courageous Kids in Scottsville, Ky.
Community Outreach – Connie Keesee, an electro-neurodiagnostic technician with Franciscan St. Francis Health, has donated many volunteer hours to EFI over the past several years. She has been particulary effective in soliciting donations and inspiring others with her positive attitude.
 
 Thanks to the many sponsors and friends of the foundation that made this year's gala a wonderful experience for everyone involved! Special thanks to our emcee, Jared Fogle; our keynote speaker, Dr. Jan Buelow; and Mark Schmidt for his photography services.  See our 2015 photo gallery on Facebook.

 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!

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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


     
This special 12-hour event designed to raise awareness about epilepsy will be broadcast online live from Hollywood on
Saturday, June 27 starting at 3 p.m. EST. Go here to find out more details. Presented by the Epilepsy Foundation and Sunovion.

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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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    Thank you to our
  2015 Gala Sponsors!

St. Vincent 
Neuroscience Institute
Sunovian
Anthem
Cyberonics
IU Neuroscience Center
Lundbeck
Neurotech
Spine-Tek Neuromonitoring
Supernus Pharmaceuticals
UCB
Upsher-Smith
Event Crashers
Monarch Beverage Company
Reis-Nichols Jewelers
 
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HELPFUL LINKS:

About Special Kids (ASK)

Epilepsy Foundation of America

Speak Up Indiana!

Danny Did Foundation

iGive

Center for Courageous Kids camp programs

Hope's Way, a recreation center for kids with special needs

Jeanne A. Carpenter Legal Defense Fund

Travel Assistance

UCB Family Epilepsy Scholarship Program

Indiana Civil Rights Commission

IndyGo bus system

We Connect Now, a website for college students with disabilities

  
 

 

 

 

 
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