Voices: Susan Axelrod

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Voices: Susan Axelrod

Founding Chair, Citizens United for Research in Epilepsy (CURE)

Mother of Lauren, who has epilepsy

“No voice is too small.”


I want to tell families that we need their voices. Adding their voices and sharing their stories to whatever degree and to whomever they can is really key to advancing epilepsy research.


One in 26 Americans will develop epilepsy in their lifetime. It’s so common that if you do speak out you’re very likely to find somebody who’s been affected in some way or another. Building a community of people in that way, by doing things as simple as talking with your neighbors, friends and colleagues is something that everyone can do.


I think this is a really hopeful time in terms of scientific advancements, but we do need to talk about it—to grow the conversation around epilepsy without any shame or embarrassment—to de-stigmatize the disease. 


It wasn’t that long ago that we wouldn’t talk about breasts or prostates at the dinner table and we do that with great comfort now. That’s where I want to see epilepsy. I think everybody can play a role in that. No voice is too small.


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