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.
  • 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 a licensed bereavement care provider and grief counselor who is also a mother who lost her daughter to 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.

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 SUDEP, 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 methods 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 and hospice organizations offer local bereavement services. 

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Multi generational family
Bereavement Support Articles

Linda Coughlin Brooks RN, BSN, CT, the SUDEP Institute Grief Therapist will be providing regular articles on topics that are important to many bereaved families.  

Holidays: A Time for Cheers or Tears 
November 5, 2014
This article shares some words of advice to help navigate the holiday season, especially if you have lost someone to epilepsy.

Coping with Holiday Grief 
December 2, 2014
This article provides you with some concrete ideas and suggestions to help you navigate this time of year.

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