Events

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.   The webinar is intended for people living with epilepsy, their family members and caregivers, and anyone seeking to learn more about mental health and epilepsy.   There will be a live Q&A at the end of the presentation. You can submit questions in advance here. CURE Epilepsy is conducting this webinar in partnership with our friends at PAME and Wishes for Elliott.

Devices that alert to seizure activity are in their early stages, but there is already a clear demand for their use by patients and caregivers. This webinar will assess the pros and cons of the current state of seizure detecting devices; provide objective considerations for patients and caregivers who are selecting a device; and offer information on the future direction of devices, with a preview of technologies in the pipeline. Speakers will include pediatrician Dr. Talia Shear from Lurie Children’s Hospital; Tom Stanton from the Danny Did Foundation; and Pedro Irazoqui, Head of the Department of Electrical and Computer Engineering at Johns Hopkins University. Welcome remarks will be presented by Jeanne Donalty, a longtime advocate, and a mother who lost her son Christopher to SUDEP.