Sudden Unexpected Death in Epilepsy (SUDEP) refers to deaths in people with epilepsy not caused by drowning, injury, or other known causes of mortality. There is often evidence of an associated seizure, and the death is usually unwitnessed. Unfortunately, SUDEP is underrecognized and underestimated, as coroners and medical examiners may be unaware of the diagnostic criteria that define SUDEP.[1, 2] CURE Epilepsy has been the leading force driving research and raising awareness about SUDEP and since 2004 has funded over 40 projects totaling nearly $6 million to understand the basic biological mechanisms underlying this tragic outcome.
Former CURE Epilepsy Board Director, Research Committee member, and SUDEP pioneer Jeanne Donalty has been a prominent voice in raising awareness of SUDEP and has worked tirelessly on grassroots approaches for awareness and prevention. Her work was motivated by the loss of her son Christopher when he was 21 years old, the recognition that healthcare providers rarely talked about SUDEP as a potential outcome of epilepsy, and the minimal research at the time in understanding SUDEP. Together with CURE Epilepsy, Jeanne worked with the National Institute of Neurological Disorders and Stroke (NINDS) to help create a “Center Without Walls” called the Center for SUDEP Research (CSR). The CSR employed a range of strategies to explore the causes of SUDEP and identify risk factors that may help prevent it. Former CURE Epilepsy Board Chair and volunteer Gardiner Lapham, who lost her son Henry to SUDEP, was instrumental in the formation of an organization called Partners Against Morality in Epilepsy (PAME). PAME continues to be a driving force in reducing epilepsy mortality by convening an annual conference of diverse stakeholders to discuss epilepsy mortality causes, share research discoveries, and identify means of prevention. CURE Epilepsy is a founding member of PAME and continues to be deeply involved by sitting on the Governance Committee, partnering on annual webinars, and financially sponsoring the annual meeting.
In addition to advocacy and education, CURE Epilepsy funds innovative research in this field of study. Specifically, CURE Epilepsy researchers have developed SUDEP registries to get a more accurate understanding of the number of people affected, investigated risk factors for SUDEP, and studied the underlying biological mechanisms of SUDEP.
