SUDEP Institute Kickoff Meeting Unites Leading Organizations with Clinical Thought Leaders to Help Raise Awareness about Epilepsy Sudden Unexplained Death
February 27, 2013
Fostering a United Vision of Growing Medical Community Awareness and Patient Education on the Risk of Sudden Unexpected Death from 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.
|SUDEP Institute Leadership: (From left) Elson So, MD (American Epilepsy Society); Vicky Whittemore, PhD (NINDS/NIH); Steve Wulchin (Freewave Technologies); Orrin Devinsky, MD (NYU Epilepsy Center); Cyndi Wright (SUDEP Institute); Warren Lammert (Epilepsy Foundation); Gardiner Laphan, RN (CURE); Phil Gattone (Epilepsy Foundation); Tom Stanton (Danny Did Foundation).|
The SUDEP Institute is highly visible – supported by some of the leading experts in epilepsy – in combination with the Epilepsy Foundation and the nation's most active organizations dedicated to advancing physician and patient support including CURE, SUDEP Aware, Danny Did Foundation and the American Epilepsy Society. It's mission and primary purpose is to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting SUDEP, one of the most difficult and emotionally charged education issues in the field of epilepsy.
Most people with epilepsy live a full and healthy life; however they should be aware that epilepsy could be fatal. Some people with epilepsy may lose their lives from accidents or the underlying cause of their condition, such as tumors or genetic syndromes. However, the leading epilepsy-related cause of death is believed to be SUDEP. This frightening reality is too often hidden or ignored because the topic is difficult to discuss and the cause is unknown.
The SUDEP Institute is committed to tackling education, awareness and prevention methods for sudden unexpected death from epilepsy, within the epilepsy and medical communities, including medical examiners and coroners, who hold responsibility for identifying cause of death. Critical to people with epilepsy, the Institute will also support investigation into the causes and methods of prevention. This will include a support Network counsel and community for individuals and families living with the risk and emotional burden of SUDEP and for those bereaved by the mortality of epilepsy, in addition to a comprehensive national SUDEP registry, which is essential to driving research.
A Parent and Advocate's Perspective
"I am the father of a 15-year-old girl with Dravet's Syndrome (a rare and catastrophic form of intractable epilepsy that begins in infancy) and an involved member of our community," said Warren Lammert, board member of the Epilepsy Foundation and co-founder of the Epilepsy Therapy Project. "For those with uncontrolled seizures like my daughter Sylvie and for anyone with epilepsy, SUDEP is a risk and a fundamental reality that has been hidden. This personally difficult topic deserves attention, acknowledgement, action and investment today . My hope is that the SUDEP Institute will provide leadership in driving awareness around intervention and much-needed research."
Introducing the SUDEP Institute Executive Leadership Team
Orrin Devinsky, MD Professor of Neurology, NYU School of Medicine Director, NYU Epilepsy Center & North American SUDEP Registry
Phil Gattone, President and CEO, Epilepsy Foundation
Warren Lammert, Board Member, Epilepsy Foundation Co-Founder, Epilepsy Therapy Project
Cyndi Wright, Director, Epilepsy Foundation SUDEP Institute
Steve Wulchin, CEO, Freewave Technologies. A father who lost his son to SUDEP
The 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