epilepsyUSA, Issue 5, 2010

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Message from the Chair

By Joyce Bender, Chair of the Epilepsy Foundation


This is the research issue of the magazine where we highlight the grants we have funded in our commitment to making sure everyone living with epilepsy has the ability to live the best life possible. As you know, epilepsy is much more than just seizures and can involve a spectrum of coexisting conditions. The article on page 17, Epilepsy as a Spectrum Disorder, explains the complexities of epilepsy and the conditions that often accompany it, like depression.

My seizures are fairly well controlled, however that is not true for many children and adults living with epilepsy. It is my hope that through research we will one day be able to help the child who is living through hundreds of seizures a day, or the adult who suffers from medication side effects.

At the Epilepsy Foundation, we are committed to supporting research directly and through collaboration with other groups. Without research we will never be able to prevent or stamp out seizures. Epilepsy is not just having a seizure. Epilepsy is living with a chronic disability that, in many cases, prevents people from driving a car, becoming employed or living a life where seizures are controlled. Living with epilepsy means you never know what’s going to happen from one day to the other. Let me be clear: I’m living with epilepsy, but I’m not ashamed of living with epilepsy. You shouldn’t be either.

I also want to give a special shout-out to all of our affiliates who are raising funds for epilepsy research (they are listed on page 15). As I always say, by working together we will move forward! I am also very proud of our partnership with the American Epilepsy Society and the wonderful doctors of our Professional Advisory Board who have given countless hours to advance epilepsy research.

Research is critical, but raising awareness is as well. Please remember that October is National Disability Employment Awareness Month and the third Wednesday in every October is Disability Mentoring Day. I am also looking forward to the month of November because it is National Epilepsy Awareness Month!

We all remember the charge from Greg Grunberg, which is to Talk About It! Last year during National Epilepsy Awareness Month we got people to tell us their stories. This year we want to encourage America to know what a seizure is, what a seizure looks like and what to do if someone is having a seizure. We want one million people in America to Get Seizure Smart during November! We need to talk about it, we need to speak up and mobilize our communities to get the word out and Get Seizure Smart! This is our chance to educate the public so that not another moment is lost to seizures.