epilepsyUSA, 2010, Issue 4

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Message from the Chair

By Joyce Bender, Chair of the Epilepsy Foundation


As you know, July 26 marked the 20th anniversary of the signing of the Americans with Disabilities Act—our act. The ADA enabled us to truly have freedom in America; freedom of access to equal protection and freedom from discrimination. I want to point out that during all the celebrations in July, one man in particular stood out: Tony Coelho, former congressman and past chair of the Epilepsy Foundation. Tony was the primary author of the ADA and a key figure in the Americans with Disabilities Act Amendments Act (ADAAA). He also has epilepsy.

Tony Coelho didn’t stop with the ADA. With Sandy Finucane, Epilepsy Foundation vice president of legal and government affairs, he helped lead the way in 2008 for the ADAAA to restore the ADA to its original intent. Tony is an integral part of two pieces of legislation that changed the rights of people with disabilities in this country forever. The Epilepsy Foundation is intrinsically connected to those two historic laws, which are part of our civil rights history.

We still have a frontier to conquer in terms of finding employment for people with epilepsy. Just know that someone like Tony Coelho will not rest until we’ve opened that door, because he knows—as you do—that it is work that gives us dignity.

I hope you will read the article on page 7 about Rachel Hanretty. She is a young woman whose life was changed forever after brain surgery, just as my life was changed after I had surgery following a traumatic brain injury. In this issue we also offer information on getting ready for back to school. It’s that time again! We went straight to the source and asked parents of children with epilepsy what their tips are for getting ready for the school year. There is also a really informative piece on health care reform on page 15. I also love the story on page 19 about a group of boys—a baseball team—who banded together to support one of their own. In this issue, we talk about preparing for back to school.

In our next issue, we will address a sometimes unfortunate part of school for kids with epilepsy: bullying. We’ll be talking about bullying and strategies to stop it. I want to hear your story. If your child has been bullied, write me at jbender@benderconsult.com and let’s stop this harmful aspect of school that affects so many kids needlessly.

Enjoy these last days of summer!