What is SUDEP?

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, about 1 out of 1,000 adults and 1 out of 4,500 children with epilepsy die from SUDEP. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled.


The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people bereaved by SUDEP and other epilepsy-related deaths.

What does the SUDEP Institute do?

  • 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


Sally Schaeffer, SUDEP Institute Director

Why did the Epilepsy Foundation create the SUDEP Institute?

  • SUDEP is the leading cause of death in people with uncontrolled epilepsy.
  • Everyone knows about the dangers of fire and SIDS, yet each year SUDEP kills more Americans than either of these.
  • Unfortunately, many people with epilepsy and their families have never heard of SUDEP.
  • While people with epilepsy say they want information on SUDEP, many doctors rarely talk about it.
  • We believe by building awareness and working together we can prevent SUDEP.

Who can benefit from the work of the SUDEP Institute?

  • 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

How can I learn more?

SUDEP Institute Newsletter

Who is involved with the SUDEP Institute?

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, and epilepsy experts.

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 small 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.

Phil Gattone
President and CEO, Epilepsy Foundation

Warren Lammert
Board Member, Epilepsy Foundation
Co-founder, Epilepsy Therapy Project

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

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

Board of Overseers

Our Board of Overseers represents a broader group of organizations and interests. They meet quarterly to hear progress updates, offer advice to enhance effectiveness, and share updates from their respective organizations. Members of this group also serve in an advisory capacity and participate as needed in various initiatives.

Greg Davis, MD MSPH
University of Alabama at Birmingham, Department of Forensic Pathology
President, National Association of Medical Examiners

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

Eileen Murray
Executive Director, American Epilepsy Society

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

Tom Stanton
Executive Director, Danny Did Foundation

Art Taggart
Executive Director, Epilepsy Foundation Heart of Wisconsin

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

Authored Date: 
Saturday, March 12, 2016