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Remembrance Wall at the 2015 National Walk for Epilesy.  View photos of the individual flags and a video of the wall.

 

The Epilepsy Foundation SUDEP Institute would like to express our deepest condolences to you and your family during this time. We understand this is a confusing and tragic time for you and we want to help. At the SUDEP Institute, you are not alone.

Our services for families include:

  • Accurate information regarding SUDEP and other causes epilepsy related deaths.
  • Individual or family support from a bereavement support faciliator who is also a mother who lost her daughter to SUDEP.
  • Online Bereavement Support Group designed to help families connect with others who have lost a loved one to epilepsy in a safe and confidential environment.
  • Remembrance pages where families can create a memorial or honorarium webpage to help families share their story to help raise awareness and understanding of SUDEP.
  • Advocacy, as needed on a case-by-case basis, which includes coordination and assistance with the death investigation process.
  • Access and assistance in enrolling and participating in SUDEP-related research opportunities.

Call 800-332-1000 and press 1 or email sudep@efa.org to learn more about our services.

In addition to supporting families bereaved by epilepsy, the SUDEP Institute leads education and awareness efforts targeted to people living with epilepsy and their caregivers as well as medical professionals, including members of the death investigation team. We also drive and support research into the causes and prevention of SUDEP. Learn more about these programs and how you can become involved.

Additional resources for support after the loss of a loved one:

SUDEP Specific Support:

National Support Organizations

Local Support Services:

Contact your local Epilepsy Foundation for more information and community resources.

Additionally, many religious institutions, hospitals, mental health agencies and hospice organizations offer local bereavement services.

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Reviewed Date: 
Friday, March 13, 2015