Sudden Unexpected Death in Epilepsy (SUDEP) happens when a person diagnosed with epilepsy dies unexpectedly and was previously in their usual state of health. The death is not known to be related to a seizure emergency such as status epilepticus and it is not related to an accident. When an autopsy is completed, no other cause of death can be found. Each year 1 out of 1000 people with epilepsy die from SUDEP. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled. The national Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP. The Epilepsy Foundation New England and Epilepsy Foundation of America provide resources and support for our epilepsy community:
Epilepsy Foundation New England Support and Resource Center
Helpdesk for resources and support: 617-506-6041 ext109
335 Main St
Wilmington, MA 01887
Epilepsy Foundation SUDEP INSTITUTE
The Epilepsy Foundation’s SUDEP Institute works to prevent SUDEP and support people confronting the fear and loss caused by SUDEP.
The SUDEP Institute offers individual bereavement support phone calls and an online bereavement support community.
Phone support: 1-800-332-1000
Online support: http://groups.epilepsy.com/groups/bereavement-support
North American SUDEP Registry (NASR)
Families who have recently lost a loved one to SUDEP, can contact the North American SUDEP Registry (NASR) and participate in their study to help find the causes of SUDEP. The multicenter NASR provides clinical data, DNA and brain tissue for the scientific community to study. For more information call 855-432-8555 or email firstname.lastname@example.org
Remembrance Pages and Memorials
Create your own memorial or honorarium webpage that can benefit the Epilepsy Foundation SUDEP Institute. By sharing your story you are helping raise awareness and understanding of SUDEP with the ultimate goal of finding its cause(s) and prevention. Optional fundraising, in honor or in memory will help the Epilepsy Foundation SUDEP Institute and support people confronting the fear and loss caused by SUDEP.