Our Mission
Advancing strategic national policies, innovative research programs,
and funding to improve the lives and outcomes of
ALL those living and struggling with The Epilepsies.
"Through collaboration and understanding, we can shatter the barriers surrounding epilepsy and create a world where knowledge, compassion, and opportunity prevail. With 1 in 26 persons diagnosed, all of us know someone with epilepsy. Research advances have accelerated our knowledge about this devastating disease, now we need policies and investments to translate these advances into improved patient outcomes."
Howard K. Koh, M.D., MPH, Professor, Harvard T.H. Chan School of Public Health; Former 4th Assistant Secretary for Health for the U.S. Department of Health and Human Services (2009-2014)
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1 in 26 people will develop a form of epilepsy in their lifetime.[1]
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3.4 million Americans currently live with active epilepsy, including 470,000 children and teenagers.[2]
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The Epilepsies impact infants, children, young adults, seniors, wounded warfighters and veterans, and persons with traumatic brain injury.
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The epilepsies can be deadly, with one out of every 1,000 people dying from Sudden Unexpected Death in Epilepsy (SUDEP).[1]This is 2x higher for the non-Hispanic Black population.
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Delayed recognition of seizures may lead to a long diagnostic odyssey.
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Inadequate or delayed treatment increase a person’s risk of subsequent seizures, brain damage, disability, and death.
The Epilepsies
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The total healthcare burden for people living with the epilepsies or seizures is at least $54 billion.
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Yet only half of a percent of the more than $42 billion the National Institute of Health (NIH) spends on medical research each year, goes to epilepsy.[2]
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32% of adults with epilepsy can't work and 53% with uncontrolled seizures live in households earning < $25,000/yr.[3]
