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
How do I access these programs?
- Learn more about SUDEP.
- Get SUDEP Brochures and Materials.
- Download SUDEP presentations and webinars.
- Learn how to Talk about SUDEP.
- Learn about our Suport for Bereaved Families.
Who is involved with the SUDEP Institute?
The Epilepsy Foundation SUDEP Institute unites leading epilepsy organizations in order to promote information sharing and facilitate coordination and collaboration. We are encouraged by the growing momentum around SUDEP and 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 ogranization 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 recommend an operating budget. This group is made up of key Epilepsy Foundation leadership in addition to other select members from the community.
President and CEO, Epilepsy Foundation
Board Member, Epilepsy Foundation
Co-Founder, Epilepsy Therapy Project
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
Director, Epilepsy Foundation SUDEP Institute
Board of Overseers
Our Board of Overseers represent 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
Tracy Dixon-Salazar, PhD
CURE Associate Research Director
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
Co-Chair, Partners Against Mortality in Epilepsy
A mother who lost her son to SUDEP
Director, Epilepsy Therapy Project
Executive Director, American Epilepsy Society
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
Executive Director, Danny Did Foundation
Vicky Whittemore, PhD (NINDS Liaison)
Program Director, Channels, Synapses and Circuits Cluster, NINDS/NIH