Epilepsy Continues to Receive Legislative Support in Illinois: The Danny Stanton SUDEP Act

Illinois Governor Pat Quinn signed the Danny Stanton SUDEP Act into law on Monday, August 12th. The law requires medical examiners and coroners to include an inquiry about a history of epilepsy and seizures as part of a standard autopsy, and, if an instance of Sudden Unexpected Death in Epilepsy (SUDEP) is determined, to report it to a national registry. Illinois State Senator Dan Kotowski, in collaboration with the Danny Did Foundation, spearheaded this bill.

“Coroners and medical examiners can play a critical role in recording instances of SUDEP. This data will help to educate the public on its causes and to provide a more accurate measure of how often it occurs,” said Kotowski, a member of the Epilepsy Foundation of Greater Chicago’s and the Danny Did Foundation’s boards of directors and a person with epilepsy. “We expect that this law will serve as a national model in combating SUDEP.”

The definition of ‘Sudden Unexpected Death in Epilepsy’ (SUDEP) is accepted as an unexpected death in a person with epilepsy, with no clear causes for death. It is a baffling condition that brings sorrow and bereavement to many families every year. Little is known about the precise causes of SUDEP, although it is now accepted that it is likely to be triggered by a seizure.  SUDEP is the most common cause of death in epilepsy and accounts for more deaths annually than from fires and sudden infant death syndrome (SIDS) combined.

Illinois joins New Jersey as the first two states to have legislation of this kind. Under the law, cases of SUDEP will be reported to the North American SUDEP Registry at New York University. It becomes effective January 1, 2014. The namesake of the legislation, Danny Stanton, died from SUDEP on December 12, 2009, shortly before his fifth birthday. 

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