The SUDEP Institute: What Is It? Why is it Needed?

Epilepsy News From:

Wednesday, May 8, 2013

Three months ago on February 26, a coalition of advocates and professionals working in SUDEP took another big step forward in their fight against SUDEP by formally launching the SUDEP Institute.

What is the SUDEP Institute?

The SUDEP Institute was forged by the Epilepsy Foundation and the coalition of leading organizations and individuals whose major initiatives are to raise SUDEP awareness and to stop SUDEP.

In addition to medical professionals and academics interested in SUDEP, participating organizations and agencies include American Academy of Neurology, American Epilepsy Society, Autism Speaks, Candlelight Concerts for Epilepsy Awareness, Center for Disease Control, Chelsea Hutchison Foundation, Citizens United for Research in Epilepsy (CURE), Danny Did Foundation, Dravet Syndrome Foundation, Dup15q Alliance, Epilepsy Australia, Epilepsy Bereaved, Epilepsy Foundation of Colorado, ICE Alliance, Lennox-Gastaut Syndrome Foundation, National Institute of Neurological Disorders and Stroke (NINDS), North American SUDEP Registry, Northern Regional Medical Examiner Office and SUDEP Aware.

The SUDEP Institute Executive Leadership Team consists of the following members: Cyndi Wright, Director of Epilepsy Foundation SUDEP Institute; Orrin Devinsky, MD, Director of NYU Epilepsy Center & North American SUDEP Registry; Phil Gattone, President and CEO of Epilepsy Foundation; Warren Lammert, Board Member of Epilepsy Foundation and Co-Founder of Epilepsy Therapy Project; and Steve Wulchin, CEO of Freewave Technologies, and a father who lost his son to SUDEP.

The SUDEP Institute also has a Board of Overseers, members of which are Elizabeth Donner, MD, FRCPC of Hospital for Sick Children in Toronto Canada, and Co-founder of SUDEP Aware; Gardiner Lapham, RN, MPH, Chair-Elect of CURE, Co-Chair of Partners Against Mortality in Epilepsy, and a mother who lost her son to SUDEP; Kim Macher, Director of Epilepsy Therapy Project; Gail Pundsack, Executive Director of Epilepsy Foundation Colorado; Elson So, MD of Mayo Clinic, Vice President of the American Epilepsy Society; Tom Stanton, Executive Director of the Danny Did Foundation; and Vicky Whittemore, PhD, Program Director of Channels, Synapses and Circuits Cluster of the NINDS.

So, why do we need the SUDEP Institute?

SUDEP is a mysterious and unique fatal disorder that strikes mainly young people without warning. It occurs in the setting of normal daily activity, often during sleep.

We still do not have good leads as to what happens before death, although in the instances when the circumstances around death was known or surmised, a generalized convulsive seizure had just occurred before death. Nonetheless, that seizure is not any stronger than the person’s usual seizure, or a seizure was not even known to have occurred.

Moreover, SUDEP occurs outside of the hospital, so that collection of information and tissues for research is challenging. Compounding this situation is the very low rate of autopsy in this country and around the world, which makes it difficult for the SUDEP diagnosis to be made with confidence, and for tissues to be collected for research.

SUDEP is not widely known in the public and in the professional communities. These and many other challenges we face with SUDEP warrant all SUDEP advocates, professionals and researchers to share their knowledge about SUDEP and coordinate their efforts against SUDEP in the forum that the SUDEP Institute provides.

The kick-off gathering of the SUDEP Institute in Washington D.C. on February 26 was actually a work conference, one objective of which was to address gaps in three areas: education and awareness, research, and supportive care in SUDEP. The kick-off conference also planned the steps that need to be taken over the next three years to address the gaps.

Authored by: Elson L. So MD on 5/2013

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