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SUDEP Institute flags at Walk memorial

The leading cause of epilepsy-related death is Sudden Unexpected Death in Epilepsy, known as SUDEP. More than 1 in 1,000 people with epilepsy will die from SUDEP each year. For people with poorly controlled seizures, the risk of dying is much higher: 1 in 150 each year. This is completely unacceptable.

“The SUDEP Institute has given SUDEP a voice so people with epilepsy and their families can do all they can to prevent this tragic outcome of epilepsy that took our beautiful Caitlin.”

The Epilepsy Foundation’s SUDEP Institute works to save lives through:

  • Creating and implementing education and awareness programs for people touched by epilepsy as well as for medical professionals.
  • Driving and supporting research into both the causes and prevention of SUDEP and epilepsy-related deaths.
  • Providing a support network offering counseling, community, and resources for individuals and families affected by epilepsy mortality.
  • Collaborating with epilepsy organizations to find the answers to SUDEP, prevent epilepsy deaths, and help families touched by epilepsy.

Our services for families include:

  • Accurate information regarding SUDEP and other causes epilepsy related deaths.
  • Peer Support Program that connects newly bereaved families with trained peer support who have experienced a death caused by epilepsy.
  • Individual or family support through licensed bereavement care providers and grief counselors who are also mothers who lost their daughters to SUDEP.
  • Online Bereavement Support Group designed to help families connect with others who have lost a loved one to epilepsy in a safe environment. 
  • Monthly enewsletters with information on navigating the grief process as well the latest news, research and efforts focused on preventing epilepsy mortality.
  • Remembrance pages where families can creat a memorial or honorarium webpage to help families share their story to help raise awarenss and understanding of SUDEP.
  • Advocacy, as needed on a case-by-case basis, which includes coordination and assistance with traversing the death investigation process.
  • Access and assistance in enrolling and participating in SUDEP related research opportunities.

NEXT: National Walk for Epilepsy

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