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.

 

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

K(NO)W SUDEP NOW

 

Cameron Boyce was a successful actor recognized by millions of fans around the world and a tremendous humanitarian, who made it his mission to use his platform and resources to give back to others in need. On July 6, 2019, Cameron passed away from SUDEP – Sudden Unexpected Death in Epilepsy. He was just 20 years old.

The Cameron Boyce Foundation and the Epilepsy Foundation have joined forces to create K(NO)W SUDEP NOW! – an initiative to bring awareness and to end sudden unexpected death in epilepsy.

Learn more and donate at KnowSUDEPNow.org

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

Why did the Epilepsy Foundation create the SUDEP Institute?

SUDEP is more common than SIDS
Click image for larger view

Everyone is aware of the dangers of fire and sudden infant death syndrome (SIDS). Yet each year, SUDEP kills more Americans than either of these. The Epilepsy Foundation understands and places a priority on the importance of educating and supporting everyone affected by epilepsy, including those who have lost.

Sadly, many people living with epilepsy have never heard of SUDEP. While research shows people with epilepsy say they want more information on SUDEP, many medical professionals rarely talk about it. The SUDEP Institute was formed in 2013 to drive awareness and education among those living with epilepsy, their caregivers, physicians, medical examiners and the public. We believe that 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?

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, 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: 
The Epilepsy Foundation SUDEP Institute
Authored Date: 
02/2020
Reviewed By: 
Sally Schaeffer
on: 
Saturday, February 8, 2020