When the SUDEP (Sudden Unexplained Death in Epilepsy) Institute was launched earlier this year, one of the first actions taken was to work toward the passage of legislation that would generate awareness and assist medical examiners in gathering data on the number of true SUDEP cases across the country.
On August 7, Gov. Chris Christie (NJ) signed the first SUDEP measure into law. Gov. Pat Quinn (IL) followed suit, signing the Danny Stanton SUDEP Act on August 12. Danny Stanton passed away from SUDEP on December 12, 2009, and inspired the Danny Did Foundation. The Epilepsy Foundation was proud to support both of these efforts.
The model state law requires medical examiners to find out about a potential history of epilepsy as part of an autopsy and would help make sure all cases are reported to a national SUDEP registry. A medical examiner’s identification of SUDEP and the release of medical history are very crucial hurdles in helping to advance SUDEP research. Accuracy in reporting SUDEP as a cause of death is a huge first step toward better accounting for the condition.
"For people living with epilepsy, SUDEP has been a relatively hidden risk,” said Phil Gattone, President and CEO of the Epilepsy Foundation. “I applaud New Jersey and Illinois for recognizing the importance of this issue through these legislative steps. This will provide critical information that will help millions of people lessen the potential risk of sudden unexplained death from epilepsy. The Epilepsy Foundation and the SUDEP Institute are dedicated to ensuring this difficult topic gets the attention, acknowledgement, and action it deserves.”
About the SUDEP Institute
The SUDEP Institute is a project led by the Epilepsy Foundation in collaboration with CURE, SUDEP Aware, Danny Did Foundation, AES and other leading epilepsy organizations and experts. Our mission is to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting SUDEP.