Wednesday, May 8, 2013

SUDEP Institute

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.

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