About CURE Epilepsy's SUDEP Program
Sudden Unexpected Death in Epilepsy (SUDEP), which occurs when a seemingly healthy person with epilepsy dies for no known obvious reason, is perhaps the most devastating possible consequence of epilepsy. SUDEP can happen to anyone with epilepsy, although certain individuals are at a greater risk. While certain steps can be taken to reduce this risk, there is a critical need for continued SUDEP research to understand the underlying mechanisms in order to prevent SUDEP.
In response to bereaved families looking for answers, CURE Epilepsy, in 2004, launched the first-ever private US research program dedicated to advancing the understanding of SUDEP and its prevention. Since this time, CURE Epilepsy has supported a significant number of research projects that have dramatically changed our understanding of this phenomenon. Simultaneously, CURE Epilepsy, in partnership with families, other non-profits, and governmental agencies, has created a strong movement driving research, awareness, advocacy, and increased funding to tackle this problem. CURE Epilepsy remains committed to unraveling the mysteries of SUDEP. We will continue to work closely with families and the research community to identify pressing needs while pushing for innovative solutions that ultimately lead to SUDEP prevention.
CURE Epilepsy has been a leader in SUDEP by:
- Awarding $5 million in SUDEP grants to date, supporting 37 research projects.
- Increasing federal funding for SUDEP research
- Actively engaging with the North American SUDEP Registry and the Sudden Death in the Young Registry, and supporting the development of the Canadian SUDEP Registry through the Canadian Paediatric Surveillance Program; these organizations collect information, DNA, brain and/or other tissues from people with epilepsy who have died unexpectedly to understand the cause of death, conduct scientific studies about the causes of SUDEP, and develop preventative measures.
- Elevating physician and patient awareness about SUDEP
- Helping pass SUDEP reporting legislation in select states
- Helping to establish respiratory arrest as a leading cause of SUDEP
- Revealing the link between SUDEP and genes found in both the brain and heart
- Helping to establish generalized tonic-clonic seizures as a clear risk factor
- Supporting the 2017 American Academy of Neurology SUDEP Practice Guidelines for physicians.
- SUDEP refers to the sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy. It may be seen with or without evidence of a recent seizure and with no cause of death found on autopsy (Nashef et al., Epilepsia, 1997)
- SUDEP is rare in individuals with well-controlled epilepsy, but relatively common in individuals with drug-resistant epilepsy (DiGiorgio et al., Frontiers in Neurology, 2017)
- The most important risk factors for SUDEP are frequent generalized tonic-clonic seizures and lack of anti-epileptic drug treatment. (DiGiorgio et al., Frontiers in Neurology, 2017, Sveinsson et al. 2020 Neurology 94.1-11)
- Ensuring that epilepsy is well-controlled with a combination of medication, diet, and/or other therapeutic mechanism is essential to decreasing the risk of SUDEP.
If you are a patient, friend, or family member affected by SUDEP who is looking to get more involved in SUDEP research or the SUDEP community, attend a PAME meeting. These events provide a forum for people with epilepsy and their families to interact with each other, clinicians and researchers, and to pay tribute to loved ones who died of SUDEP.
In addition to attending a PAME meeting, you can get involved by donating to HOPE4SUDEP. This initiative honors the life of Cameron Benninghoven, who passed away in 2009 from SUDEP. Cameron’s family and friends have partnered with CURE Epilepsy to maximize their fundraising and awareness efforts. Donations to HOPE4SUDEP will be used for SUDEP and epilepsy research to investigate causes and prevention of seizures.