Ending Epilepsy & Curing SUDEP

There are currently 3.4 million people living with epilepsy in the United States (1.2% of the population) and it is the second leading cause of death from a neurological condition (CDC).  We can change this.

Graphic: What is Epilepsy
“Epilepsy, which is sometimes called a seizure disorder, is a disorder of the brain. A person is diagnosed with epilepsy when they have had two or more seizures.”
Graphic: What is Sudep
“SUDEP stands for Sudden Unexpected Death in Epilepsy. SUDEP refers to deaths in people with epilepsy that are not from injury, drowning, or other known causes. Most, but not all, cases of SUDEP happen during or right after a seizure.”

Since 2008, funding by the National Institutes of Health (NIH) for epilepsy increased by only 5 percent, which is far less than for other neurological diseases. While the NIH spends more than $30 billion on medical research every year, less than half of a percent goes to epilepsy. This is a problem that the Cameron Boyce Foundation hopes to rectify.

Now What logo
Graphic: You've been diagnosed with epilepsy Now What? It's time to take control of your epilepsy.A person looking into camera
A person smiling

The Now What campaign empowers people newly diagnosed with epilepsy to take control of their health and figure out, Now What? The campaign will provide fact sheets, emotional support, video content, information about level 4 centers, directories and more.

Hands holding a phone
I’ve had a seizure, now what?
After your seizure is over, make sure to have someone drive you to an emergency room to rule out any serious medical problems. You should then talk to your doctor about seeing a specialist.
I’ve been diagnosed with epilepsy, now what?
Once you have been diagnosed make sure to speak to your doctor about a referral to an epileptologist and level 4 Epilepsy Center. You should be provided with more comprehensive services an care specific to your diagnosis.
I just heard about SUDEP, now what?
Sudden Unexpected Death in Epilepsy or SUDEP is a real albeit rare occurrence for those living with epilepsy. Make sure to talk to your specialists about way to decrease your risk.

Resources

Graphic: What is a level 4 center? “A level 4 center provides the more complex forms of intensive neurodiagnostic monitoring, as well as more extensive medical, neuropsychological, and psychosocial treatment. Level 4 centers also offer a complete evaluation for epilepsy surgery”
Facebook group for Epilepsy patients

A one-stop shop for everything you need to know about what happens when you or a loved one is diagnosed with epilepsy. This is a community intended to share information to make living with epilepsy easier for everyone.

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Graphic: Epilepsy is one of the most common conditions affecting the brain. When counting both children and adults in the United States:
About 5.1 million people in the United States have a history of epilepsy.
About 3.4 million people in the United States have active epilepsy.Graphic: What is the difference between a neurologist and epileptologist
Neurologist- “A neurologist is a medical doctor with specialized training in diagnosing, treating, and managing disorders of the brain and nervous system.”
Epileptologist - “An epileptologist is a neurologist who specializes in caring for people with epilepsy. They have completed an additional one or two years of subspecialty training in epilepsy care.”Graphic: How to tell friends you have epilepsy?Graphic: What do I do when someone has a seizure?Graphic: Health Disparities in EpilepsyGraphic: Apps for Epilepsy.
Download Resources to learn more about Curing Epilepsy and Ending SUDEP.
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Epilepsy Funding and Research

Epilepsy is sorely underfunded. 3.4 million Americans live with active epilepsy including 470,000 children and teenagers. Thirty to forty percent of people with epilepsy live with uncontrolled seizures despite available treatments. The CDC estimates that epilepsy imposes an annual economic burden of $19.4 billion on the country.  Unfortunately U.S. federal funding in epilepsy is modest and significantly lags behind other common neurological conditions.

The Cameron Boyce Foundation partners with CURE epilepsy to fund the Cameron Boyce Foundation taking flight award which funds novel research around controlling seizures and curing SUDEP.

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Picture of Dr. Cristina Reschke holding books
“We all go. What you leave should be bigger than you.”
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