Message from the Chair (June 2006)

Special to EpilepsyUSA
Posted: June 1, 2006

By now, many of you have heard my story. I began having seizures at age 16, didn't learn what epilepsy actually was until age 21, and grew up in a household in denial of my condition.

For years this part of my life was hushed and kept in the closet. It was easier on everyone if it simply never reared its ugly head, because as my parents once said, "No child of ours has epilepsy."

This is no way for a child with epilepsy to grow up - in denial of their own condition, victims of stigma without themselves even knowing it. It's tragic, to be honest.

As I page through this issue of EpilepsyUSA, I am reminded that times have changed for the better. I'm left feeling hopeful for what our "kids of today" will produce tomorrow.

The Epilepsy Foundation's Public Policy Institute is one of my favorite programs. It's Kids Speak Up! program allows children to be open and honest about their epilepsy, not subdued and ashamed. And to know their parents are nearby to lend support while the child is speaking to their congressman or congresswoman warms my heart. I wish I had such a thing while growing up.

It's vital that more children start participating in these types of programs. The Foundation's 13th meeting proved to be one of the most successful to date, but we cannot become complacent. We must continue stressing to our kids the importance of them learning more about epilepsy and more about how to become successful advocates. Quite simply, they are the future, and to use an age-old saying, "Practice makes perfect."

It gives me hope for the future knowing the next generation of epilepsy advocates is getting an early start like this. It also gives me hope learning that the next generation of epilepsy researchers will soon have an outstanding colleague in the form of Cody Locke.

Locke, a pending graduate of the University of Alabama, could be the next "great epilepsy mind." At only age 22, his work has already been featured in the renowned medical journal Science, and he is the only student to have ever been named to the USA Today All-USA College Academic Team three times. As an undergraduate he developed a revolutionary program called CarpeDB, a database that lists more than 400 genes known to be associated with epilepsy. It is, by far, the most comprehensive database of its kind on Earth.

When I think about the future, I can't help but breathe a sigh of relief. With programs like the Public Policy Institute firmly in place, and with brilliant young scholars like Locke already on the job, the epilepsy community can have confidence knowing the coming years will be led by well-prepared, well-seasoned advocates and researchers.

-- Tony Coelho