About CURE'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, in 2004, launched the first ever private US research program dedicated to advancing understanding of SUDEP and its prevention. Since this time, CURE has supported over 40 investigators who have dramatically changed our understanding of this phenomenon. Simultaneously, CURE, in partnership with families, other non-profits and governmental agencies, have created a strong movement driving research, awareness, advocacy and increased funding to tackle this problem. CURE 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 has been a leader in SUDEP by:
  • Awarding over 4 million dollars in SUDEP grants to date
  • Collaborating with more than 40 SUDEP investigators
  • Increasing federal funding for SUDEP research
  • Actively engaging with the North American SUDEP Registry and the Sudden Death in the Young Registry, and supporting 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.

Quick Facts

  • 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 greatest risk factor for SUDEP is a history of frequent generalized tonic-clonic seizures (DiGiorgio et al., Frontiers in Neurology, 2017)
  • 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.

Get Involved

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 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.

QUESTIONS ABOUT SUDEP?

Program Timeline

  • 1993

    DFA and Burroughs Welcome Committee define “Sudden Unexpected Death in Epilepsy,” or “SUDEP”.

  • 1998

    CURE is founded by Susan Axelrod to advance the field of epilepsy research in honor of her daughter, Lauren.

  • 2002

    In memory of her son, Christopher, Jeanne Donalty teams up with CURE to advocate and raise funds for SUDEP research.

  • 2004

    CURE launches SUDEP research program and funds first grant.

  • 2005

    CURE and the American Epilepsy Society (AES) co-host the first SUDEP workshop at the annual AES meeting.

  • 2008

    CURE drives collaboration between CURE and NINDs in hosting the first scientific SUDEP conference.

  • 2010

    NINDS and CURE develop Centers Without Walls concept to promote collaborative research to speed the pace of epilepsy research.

  • 2012

    CURE is instrumental in establishing the Partners Against Mortality in Epilepsy meeting, a conference designed to increase SUDEP awareness and to bring together key stakeholders: clinicians, researchers, and families/advocates/lay organizations in the fight against SUDEP.

  • 2017

    New York Governor Andrew Cuomo signs legislation allowing Sudden Unexpected Death in Epilepsy (SUDEP) to be listed as a cause of death on death certificates.

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