CURE Epilepsy Webinar – Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research

In partnership with DEE-P Connections and Partners Against Mortality in Epilepsy (PAME)

Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age ^1,2. While lack of seizure control and seizure severity are the most common concerns for increased risk of SUDEP, there is also a concern that certain genetic mutations may increase SUDEP risk.   

This webinar will discuss what we know about SUDEP, specifically in the rare epilepsy community, as well as what parents and caregivers of children with rare epilepsies should know about SUDEP prevention and ways to mitigate risk. Presenters will share ideas on how to discuss SUDEP with doctors, from both the perspective of a physician and a parent of a child diagnosed with a rare genetic epilepsy who has educated themselves about SUDEP and taken steps to reduce the risk of SUDEP for their child. Attendees will have the opportunity to ask questions to all presenters. The webinar will also include a discussion about the latest advancements in basic and clinical epilepsy research focused on SUDEP risk and prevention.  

There will be a live Q&A at the end of the presentation. You can submit questions in advance here.

The professional speaker for this webinar will be Dr. Sam Lhatoo – a neurologist and neurophysiologist with expertise in the medical and surgical management of intractable epilepsy. He has been a director for top-level epilepsy centers in the UK and USA since 2006 and an instructor for the International Stereo EEG course since its inception in 2010. Dr. Lhatoo serves as the head of the International League Against Epilepsy’s Task Force for Big Data in Epilepsy. He has a particular interest in the epidemiology, phenomenology, and pathogenesis of SUDEP and his published work has described potential biomarkers of SUDEP.

¹ Sveinsson O, Andersson T, Carlsson S, Tomson T. The incidence of SUDEP: A nationwide population-based cohort study. Neurology. 2017 Jul11;89(2):170-177.

² Keller AE, Whitney R, Li SA, Pollanen MS, Donner EJ. Incidence of sudden unexpected death in epilepsy in children is similar to adults. Neurology. 2018 Jul 10;91(2):e107-e111.