Published on: Wed, Feb 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.
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
The SUDEP Institute Board of Overseers