Message from the Chair

By Joyce Bender, Chair of the Epilepsy Foundation

You have no idea what a great honor it is for me to be the Chair of the National Epilepsy Foundation. As a woman with epilepsy, who almost lost her life due to a misdiagnosis of my disability, I now have the chance to serve millions of people with epilepsy and help work to end the stigma associated with the disorder.

I recently had the pleasure of attending one of my favorite events, the Foundation’s Public Policy Institute and Kids Speak Up! programs. I particularly enjoy the kids’ dinner, where I get to spend a lot of time with young people with epilepsy who are all future leaders. Hearing about how they are overcoming bullying and stigma and finding a way to make a difference in the lives of everyone with epilepsy is absolutely inspirational to me.

I have several priorities on my platform as Chair, but the main one is employment because that’s what I’m all about. I started my own business, Bender Consulting Services, to provide employment and career opportunities—as well as freedom and independence—for people with disabilities. Most people with epilepsy are capable of entering the workforce and being valuable and contributing members in a wide variety of professions. I want to help open those doors and also educate employers about the necessity of thinking more inclusively when it comes to hiring. These are tough economic times, as we all know, and we can’t afford to exclude such an essential portion of our population. One that is ready, willing and able to work hard and get the United States back on its feet again.

Another group I want to focus on, because they are poised to be leaders very soon, is the National Youth Council. During the time I am Chair, I will definitely be listening to their voices. Great ideas are not limited to adults. In order to make a difference in the lives of people with epilepsy we have to listen to everyone—young and old—so we can make a real difference. In particular, I want young people with epilepsy to know that if they have been bullied or made to feel inferior, it is a whole new world. Get ready: I’m here for you.

I was also thrilled to attend the third annual National Walk for Epilepsy this year. I love the Walk. It overwhelms me every year to see this wave of people on the National Mall wearing purple shirts that say: I have epilepsy and I am not ashamed. Because that is a part of who I am. Every time I speak publicly—not just at the Foundation—that is what I say: I have epilepsy and I am not ashamed.

In this country people have been living in the shadows and hiding their shame for far too long. Sadly, many parents tell their children, “Don’t tell anyone you have epilepsy.” I say that people with epilepsy need to come out of the shadows. When you speak up—when you talk about it—it makes such a difference. Former congressman Tony Coelho, a past Chair of the Foundation, is my mentor. He told me, “When you get the chance to take the podium, speak up.” Well, here I am and I’m going to speak up.

I took the baton as Chair from Steve Sabatini. I want Steve to know that on behalf of all people with epilepsy, I thank him and commend him for his dedication, integrity and service. It was a blessing for me to know Steve, not just as a leader, but as a friend. We wish Steve all the best and know that he will always be involved with our cause. Well, everyone—it’s great to be here. Get ready to rock and roll!