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headshot of Tony Coelho

Tony Coelho

“We have entertainers and comedians who make fun of us and that is very heartbreaking. Young people with epilepsy need to know that they can succeed at whatever they want to do if they have a real desire. That the American dream includes them.”

–Tony Coelho, former Congressman and author of the Americans with Disabilities Act

Harriet Tubman had epilepsy after acquiring a traumatic brain injury when a slave owner struck her in the head. Additionally, football star Tiki Barber and musicians Lindsey Buckingham, Lil Wayne and Neil Young have epilepsy.

Epilepsy is a chronic neurological and developmental disorder that affects one in 26 people in their lifetime and 48 in 100,000 people each year. According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder. It is characterized by “recurrent, unprovoked seizures.”

Use person-first language when talking about someone with epilepsy. Say “girl with epilepsy.” Do not use epileptic as a noun to describe the person. Say that a person had a seizure, not a fit or an epileptic fit.

National organizations for people with epilepsy:

  • The American Epilepsy Society is one of the oldest neurological professional organizations in this country. The Society seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about epilepsy.
  • Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency fully committed to funding research in epilepsy. CURE’s mission is to cure epilepsy, transforming and saving millions of lives. They identify and fund cutting-edge research, challenging scientists worldwide to collaborate and innovate in pursuit of this goal.
  • The Epilepsy Foundation is a community-based, family-led organization dedicated to improving the lives of all people impacted by seizures.

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