SUDEP Institute

Sudden unexpected death in epilepsy (SUDEP) is said to occur when a person with epilepsy dies unexpectedly and was previously in their usual state of health. The death is not known to be related to an accident or seizure emergency such as status epilepticus. When an autopsy is done, no other of cause of death can be found. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled.

Learn more about SUDEP

The Epilepsy Foundation’s SUDEP Institute works to prevent SUDEP and support people bereaved by SUDEP and other epilepsy-related deaths.

  • Carries out SUDEP education and awareness for people impacted by epilepsy and medical professionals
  • Drives and supports research into the causes of and ways to prevent SUDEP
  • Offers bereavement support services and an online community for those affected by SUDEP
  • Works together with other epilepsy organizations to find the answers to SUDEP and help families with epilepsy

Read the SUDEP Institute updates

  • Individuals and families living with epilepsy
  • Families whose loved one has died due to epilepsy
  • Epilepsy specialists, neurologists, primary care physicians, and nurses
  • Coroners, medical examiners, and first responders
  • Researchers

The Epilepsy Foundation SUDEP Institute works with leading epilepsy organizations to promote information sharing and facilitate coordination and collaboration. We believe that by working together we can more quickly raise awareness, drive research and promote prevention. The SUDEP Institute is transparent in its efforts and is eager to share materials and knowledge that advance the field. Our current partners include American Epilepsy Society, CDC, CURE, Danny Did Foundation, NIH/NINDS, North American SUDEP Registry, SUDEP Aware, SUDEP Action, epilepsy experts and many other epilepsy organizations worldwide.

Contact us to learn more about the SUDEP Institute and how you and your organization can help us prevent epilepsy mortality.

Executive Leadership Team

The SUDEP Institute Executive Leadership team is made up of a group of people who help set the vision, strategic direction and annual operating budget. This group is made up of key Epilepsy Foundation leadership and other members from the community.

Orrin Devinsky MD
Professor of Neurology, NYU School of Medicine
Director, NYU Epilepsy Center & North American SUDEP Registry

Roch Doliveux DVM
UCB Board of Directors
Vice President, European Federation of Pharmaceutical Association Board

Elizabeth Donner MD, FRCPC
SickKids, Division of Neurology
Co-founder, SUDEP Aware

Dan Friedman MD
Assistant Professor of Neurology, NYU Langone Medical Center
SUDEP Editor for epilepsy.com

Gardiner Lapham RN, MPH
A mother who lost her son to SUDEP

Susan Linn
President & CEO, Epilepsy Foundation of New England

Eileen Murray
Executive Director, American Epilepsy Society

John Popovich
A father who lost his son to SUDEP

Philippe Ryvlin MD, PhD
Professor of Neurology, Lyon University, France
Co-Founder, Institute for Children and Adolescents with Epilepsy
Director, Translational and Integrative Group in Epilepsy Research

Robert W. Smith
Interim Chief Executive Officer and Immediate Past Chair of the Board

Tom Stanton
Executive Director, Danny Did Foundation

Vicky Whittemore, PhD (NINDS Liaison)
Program Director, Channels, Synapses and Circuits Cluster, NINDS/NIH

Steve Wulchin
Board Member, Epilepsy Foundation
A father who lost his son to SUDEP

Authored By:

Epilepsy Foundation SUDEP Institute

on Saturday, February 08, 2020

Reviewed By:

Alison Kukla MPH

on Friday, April 01, 2022

Resources

Epilepsy Centers

Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.

Epilepsy Medication

Find in-depth information on anti-seizure medications so you know what to ask your doctor.

Epilepsy and Seizures 24/7 Helpline

Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.

Tools & Forms

Download our seizure tracking app, print out seizure action plans, or explore other educational materials.