CDC-NIH Forum on SUDEP
Epilepsy Group Founder Michelle Welborn to Participate in
Sudden Unexpected Death in Epilepsy
Winston-Salem, N.C. – Michelle Welborn, PharmD, founder of the Intractable Childhood Epilepsy (ICE) Epilepsy Alliance, is one of 30 epilepsy advocates and researchers who will take part in an open forum discussion in Washington, D.C., on Oct. 13, about the causes of Sudden Unexpected Death in Epilepsy (SUDEP). The conference is being convened jointly by the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health’s National Institute for Neurological Disorders and Stroke (NINDS). It will be headed by David Thurman, M.D., M.P.H., a medical epidemiologist and neurologist from the CDC.
“SUDEP claims the lives of thousands of epilepsy patients each year,” explains Dr. Welborn, who founded ICE Epilepsy Alliance after her daughter, Lilly, was diagnosed with Dravet syndrome, a rare and severe form of epilepsy, as an infant. “This forum will allow us to explore the incidence of SUDEP so that we can better understand its causes and hopefully prevent its occurrence.”
One in 1,000 people with epilepsy die from SUDEP. For those with severe forms of epilepsy that cannot be controlled by medications, the risk of SUDEP is 24 times higher than the general population.
About the Intractable Childhood Epilepsy (ICE) Epilepsy Alliance
The Intractable Childhood Epilepsy (ICE) Epilepsy Alliance is a non-profit 501c3 organization based in Winston-Salem, N.C., that is dedicated to improving the lives of children affected by intractable epilepsy. The organization partners with families, neurologists, government leaders, industry and philanthropists to provide evidence-based information; advocate for appropriate medical treatment, including compassionate use and Orphan drug products; promote drug development; collect data through patient registries; and fund research geared toward helping find a cure for intractable childhood epilepsies.