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 and in the advancement of preventative measures.

Activity related to SUDEP research has gained momentum in recent years; SUDEP has become a hot topic at all levels of meetings among neurologists, epileptologists, 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.

In the U.S., 50,000 people die annually as a result of a seizure. While each of these deaths is not a SUDEP, every one of these deaths is a huge loss, and 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:

  • Challenge and encourage doctors to address SUDEP with epilepsy patients.
  • Seek out technologies and devices that serve as seizure detection and prediction systems for home use that sound an alarm and alert others when seizure activity occurs.
  • Offer practical information to epilepsy patients and their loved ones on ways to learn about SUDEP and ways to possibly prevent SUDEP.
  • 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.

Please read more here for further information and facts about SUDEP.