Sudden Unexplained Death in Epilepsy (SUDEP) is just that: sudden and unexplained. That’s how Danny died, and that’s why we’re here. The Danny Did Foundation pledges to shine a light on SUDEP for as long as is necessary to achieve major progress in awareness, diagnosis, and treatment.

Activity related to SUDEP research has gained momentum in recent years; SUDEP has become a hot topic at all levels of meetings among both neurologists and epilepsy organizations. This momentum is very, very necessary as it seems that an entire generation has passed during which little progress has been made in understanding —let alone in solving— this medical conundrum.

As is the goal with other deadly afflictions, SUDEP must be attacked, dissected, understood, and conquered. This requires increased funding for research and the brightest minds in medicine and technology leading this research. The Danny Did Foundation is committed to serving as a reservoir of information concerning ongoing SUDEP studies and advancements in technologies that may play a role in helping to prevent SUDEP.

The DDF’s approach is multi-pronged:

1. Challenge and encourage doctors to address SUDEP with epilepsy patients.
2. Seek out technologies that serve as seizure-detection systems for home use that sound an alarm and alert others when seizure activity occurs.
3. Offer practical information to epilepsy patients and their loved ones on ways to learn about SUDEP and ways to possibly prevent SUDEP.
4. Utilize our Medical Advisory Board to provide the latest news in SUDEP research and SUDEP-related issues.

Solving the SUDEP riddle will be achieved only when specific risk factors are identified and the exact mechanisms of death are determined. As even people with infrequent seizures are at risk to succumb to SUDEP, the work of preventing SUDEP by way of finding precise preventative measures that can be prescribed for epilepsy patients is work of extreme importance. The Danny Did Foundation is committed to this work.

Much has been written about SUDEP. What follows is a selection of discourses we believe to be extremely informative if for no other reason than they each wind around to a similar conclusion: SUDEP awareness is a positive development and a necessary first step in assisting families and caregivers of those with seizure disorders.

Unmasking Silent Killer in Epilepsy, New York Times, July 26, 2010

Jon Meacham: Epilepsy In America: What Needs To Be Done, from Newsweek magazine

Dr. Stephan Schuele: Talking about SUDEP is First Step to Understanding It, from Epilepsy Connections magazine courtesy of the Epilepsy Foundation of Greater Chicago

Morgan Murphy: Epilepsy’s Hidden Toll, from Epilepsy Connections magazine courtesy of the Epilepsy Foundation of Greater Chicago

Sudden Unexpected Death in Epilepsy: A Global Conversation, reprinted with the permission of Epilepsy Australia – the national coalition of Australian epilepsy associations and Epilepsy Bereaved UK

Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy, from Epilepsia

What Can be Done to Reduce the Risk of SUDEP?, from Epilepsy & Behavior

Jeffrey Noebels, MD, PhD and Alica Goldman, MD, PhD, Baylor College of Medicine, Houston: A Preventable Cause of Sudden Unexpected Death in Epilepsy (SUDEP) Finally is Established

BBC News: Dog Helps Severe Epileptic Live Life to Fullest