Sorting Out SUDEP
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** CURE Epilepsy Discovery
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** Sorting Out SUDEP: Seeking The Causes, Finding Those At Risk
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When Melanie Whittamore-Mantzios’ teenage son, Nick, was diagnosed with epilepsy, the family was told he would outgrow it. His seizures happened when he was asleep, but were largely controlled by medication. This treatment plan worked well enough for him to graduate from Case Western University with a degree in biomedical engineering.
But rather than going away on its own, epilepsy ultimately claimed his life: Nick died in 2019, at age 28, from Sudden Unexpected Death in Epilepsy (SUDEP).
The shock of SUDEP leaves many families looking for explanations, but the biological causes remain hazy. Current thinking links SUDEP to seizure-related disruptions in breathing, heart rhythms, or brain function, but there is as yet no clear biological signal for SUDEP. To address this, in 2004 CURE Epilepsy established the SUDEP Research Initiative to fund research seeking to understand these tragic deaths. Forty research grants and $5.8 million dollars later ([link removed]) , progress has been made toward defining signs of SUDEP in the brain, as well as establishing databases, called registries, that contain information about people who have succumbed to SUDEP. These registries have provided important information about the incidence of SUDEP.
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Now, CURE Epilepsy is helping to pull together research results from different labs into cohesive answers on SUDEP in two different initiatives. ([link removed]) Through its SUDEP Data Standardization project, scientists will better characterize their SUDEP-related findings in a way that is mutually understandable between researchers. In addition, CURE Epilepsy has initiated a SUDEP Risk Assessment and Prevention Project, which seeks to identify risk factors for SUDEP, and compile them into a risk assessment tool, similar to those available for other diseases like cancer.
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Our mission is to fund breakthrough research that will transform the lives of people with epilepsy as we lead the search for a cure. CURE Epilepsy is a non-profit 501(c)(3) tax-exempt organization. Our tax identification number is 36-4253176.
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