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:

EFNE RESOURCE AND SUPPORT CENTER

At Epilepsy Foundation New England, we are working to raise awareness, provide education and resources to families, aid in linking families to bereavement support, honor loved ones lost to SUDEP, and provide ongoing supportive listening through our HELPDESK services. EFNE works together with the national epilepsy foundation’s SUDEP Institute.   

HELPDESK 617-506-6041 ext 109 or email: support@epilepsynewengland.org

 

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 and an online bereavement support community.

Phone support: 1-800-332-1000

 

NORTH AMERICAN SUDEP REGISTRY (NASR)

Families who have recently lost a loved one to SUDEP, can contact the NASR and participate in their study to help find the cause of SUDEP. The multicenter NASR provides clinical data, DNA and brain tissue for the scientific community to study SUDEP. For more information call 855-432-8555 or email: info@sudep-registry.org

 

SUDEP ACTION

SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including SUDEP. 

 

SUDEP AWARE

Sudep Aware provides awareness, education, support and honors loved ones who have lost lives to SUDEP.   

 

SUDDEN UNEXPECTED DEATH IN CHILDREN (SUDC)

The SUDC Foundation is dedicated to increasing the awareness of sudden unexpected deaths in childhood and funding crucial research to better understand and prevent these tragedies. It is devoted solely to the needs of families and professionals touch by the unexpected/unexplained deaths of children.