These 4 moms attended our NH Walk for Epilepsy on 10.14.18. They each have lost a young person to SUDEP within the last 2 years and they found each other through Epilepsy Foundation NE. This was the 2nd year we held the walk on 10.14; Amberlee Carroll died on 10.14.16 at age 18. Mom Tracy is 2nd from left. To the far right is Angela Miller whose daughter Dakota died on 10.15.16; the girls had almost the same birthdate. Far left: Sheri Higgins lost her 20 year old son Tyler in 2016. Lori Worrall lost her 20 year old daughter Emily in 2018.
Remembrance Network
Epilepsy Foundation New England’s “Remembrance Network” supports individuals and families who have experienced the loss of a loved one due to SUDEP (Sudden Unexpected Death in Epilepsy) or an epilepsy related death. Under the direction of the Resource and Support Services Coordinator, the Network is comprised of volunteers who have themselves lost a loved one to epilepsy and would like to share their personal experience of loss and recovery to help others through this very difficult journey.
If you would like support from the Remembrance Network, please call or email Susan Linn at slinn@epilepsynewengland.org or 617-506-6041 x 100.
The Remembrance Network can provide direct and immediate support. When the Foundation is notified of a death, a Network volunteer will reach out to the family to offer in-person and/or remote support. This support will continue as needed.
The Remembrance Network holds monthly meetings, facilitated by Epilepsy Foundation NE Staff, and will often include a grief counselor who will provide basic training and information on various topics (i.e the five stages of grief, how to get through the holidays etc.) as well as plenty of time for open discussion.
Epilepsy Foundation NE Staff oversee the Remembrance Network volunteers, ensuring each volunteer is in an appropriate stage of their own grief to effectively help others. The Epilepsy Foundation New England is in the process of developing a “Remembrance Network” to support individuals and families who have experienced the loss of a loved one due to SUDEP (Sudden Unexpected Death in Epilepsy) or an epilepsy related death. Under the direction of the Resource and Support Services Coordinator, the Network will be comprised of volunteers who have themselves lost a loved one to epilepsy and would like to share their personal experience of loss and recovery to help others through this very difficult journey.
To Join Remembrance Network:
-Must be 21 years of age or older and have lost a family member to SUDEP or epilepsy related death
-Interview with Epilepsy Foundation NE Resource and Support Services Coordinator required
-Background check required
-Complete 6 hours of Foundation-sponsored training
-Must attend monthly meetings/trainings with 75% attendance to maintain membership
-Volunteers give 1-8 hours per month
Please contact Susan Linn at 617-506-6041 x 100 or slinn@epilepsynewengland.org for more information.