SUDEP Institute
About the SUDEP Institute
The SUDEP Institute is a project led by the Epilepsy Foundation in collaboration with CURE, SUDEP Aware, Danny Did Foundation, AES and other leading epilepsy organizations and experts.Our mission is to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting SUDEP.
This will be accomplished through an aggressive, collaborative and worldwide program:
- SUDEP Education and Awareness and prevention methods targeting the epilepsy and medical communities, including medical examiners and coroners.
- Research into the causes and methods of prevention of SUDEP and epilepsy mortality, including support of [a][the first] comprehensive national SUDEP registry.
- SUDEP Support Network providing counseling, community, and resources for individuals and families living with the risk of or bereaved by the mortality of epilepsy.
The SUDEP Institute unites leading epilepsy organizations and experts in the urgent pursuit of SUDEP prevention through programs supporting:
- Individuals and families living with living with the risk of or bereaved by epilepsy
- Epilepsy specialists, neurologists, primary care physicians and nurses
- Coroners, medical examiners and first responders
- Researchers and pharmaceutical and device companies
- Epilepsy Foundation affiliates and epilepsy organizations as ambassadors, who will collaboratively champion a unified message, distribute resources and execute the programs developed by the SUDEP Institute.
SUDEP Institute Executive Leadership Team
Phil Gattone
President and CEO, Epilepsy Foundation
Warren Lammert
Board Member, Epilepsy Foundation
Co-Founder, Epilepsy Therapy Project
Steve Wulchin
CEO, 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
Cyndi Wright
Director, Epilepsy Foundation SUDEP Institute
Board of Overseers
Elizabeth Donner, MD, FRCPC
SickKids, Division of Neurology
Co-founder, SUDEP Aware
Gardiner Lapham, RN, MPH
Chair-Elect, 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
Elson So, MD
Mayo Clinic, College of Medicine
Vice-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
Current Initiatives
SUDEP Institute Kick-Off Meeting
The SUDEP Institute Kickoff Meeting united leading organizations with clinical thought leaders to help raise awareness about Sudden Unexplained Death in Epilepsy. The Epilepsy Foundation and a coalition of partners met together in Washington, DC to launch the SUDEP Institute, a new national initiative of the Epilepsy Foundation. Read more.
Support for SUDEP Legislation
The SUDEP Institute and its partners are leading the call for new legislation that would establish a program to educate medical examiners about SUDEP and their critical role in advancing research of this condition. The bill would require medical examiners to respond to questions, as part of their investigation into the cause of death, which would determine if the person in question had epilepsy. If a medical examiner's findings in an autopsy are consistent with the definition of known or suspected SUDEP, the medical examiner would then be required to indicate SUDEP as the cause or suspected cause of death and request from the authorized survivors that the decedent's relevant medical information be sent to a SUDEP registry. The medical examiner would also be required to make an organ donor request such that brain tissue is donated to facilitate SUDEP research. Today, two of the greatest hurdles in advancing SUDEP research are the accurate reporting of cause of death and the rapid collection of brain tissue to further research.
Read the SUDEP & Epilepsy Joint Statement of Epilepsy Foundation & American Epilepsy Society. Currently, three states are introducing this new SUDEP legislation including New Jersey (http://legiscan.com/NJ/text/S2227/id/665619), Illinois (http://www.ilga.gov/legislation/BillStatus.asp?GA=98&DocTypeID=SB&DocNum=1226&GAID=12&SessionID=85&LegID=71412) and Colorado. Learn more about these efforts at:
http://www.epilepsyfoundation.org/getinvolved/advocacy/inthestates.cfm and
http://www.capwiz.com/efa/issues/
Based on the experiences in these three states, the SUDEP Institute will create a lessons-learned guide and support other states in initiating similar legislation.We will also help create and distribute SUDEP training to Medical Examiners and Coroners to enable implementation of the legislation.
