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.
- Monthly enewsletters with information on navigating the grief process as well the latest news, research and efforts focused on preventing epilepsy mortality.
- 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 firstname.lastname@example.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
- Compassionate Friends
- Mothers in Support and Sympathy (MISS Foundation)
- Sudden Unexplained Death In Childhood Program
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.