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, 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 Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused SUDEP. 

What does the SUDEP Institute do?

  • Carries out SUDEP Education and Awareness programs for people touched by epilepsy and medical professionals.
  • Drives and supports research into the causes of and ways to prevent SUDEP.
  • Offers a support network providing counseling, community, and resources for individuals and families affected by SUDEP.
  • Works together with many epilepsy organizations to find the answers to SUDEP and help families with epilepsy.

Read the SUDEP Institute Updates!

Why did you 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. Each year SUDEP kills more Americans than either of these. Yet, many people with epilepsy and their families have never heard of it.
  • 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 your programs?

  • 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 do I access these programs?

Who is involved with the SUDEP Institute?

The Epilepsy Foundation SUDEP Institute unites leading epilepsy organizations including American Epilepsy Society, CDC, CURE, Danny Did Foundation, NIH/NINDS, SUDEP Aware, and epilepsy experts.

Executive Leadership Team

Phil Gattone
President and CEO, Epilepsy Foundation

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

Steve Wulchin
President, FreeWave Technologies
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

Cyndi Wright
Director, Epilepsy Foundation SUDEP Institute

Board of Overseers

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
Chair, CURE
Co-Chair, Partners Against Mortality in Epilepsy
A mother who lost her son to SUDEP

Kim Macher
Director, Epilepsy Therapy Project

Gail Pundsack
Executive Director, Epilepsy Foundation Colorado

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

Elson So, MD
Mayo Clinic, College of Medicine
President, American Epilepsy Society

Tom Stanton
Executive Director, Danny Did Foundation

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

April 22, 2014

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