Families are an integral part of raising awareness about mortality in epilepsy and sudden unexpected death in epilepsy (SUDEP). Your stories drive advances in knowledge, education, data collection, research, and support for people living with and bereaved by epilepsy.

The Epilepsy Foundation is here to support you as you raise awareness about mortality in epilepsy. Please contact us if you need assistance, want support, or would like to tell us about your work advocating for SUDEP awareness. You can also join our online bereavement support group to share ideas and get support.

Here are some opportunities and tools to help you raise awareness about mortality in epilepsy and SUDEP.

Share Your Story

Telling our stories has the power to teach, persuade, and change behavior. Your SUDEP story can drive powerful change by raising awareness about the risk of SUDEP, and it has the potential to save lives. Consider these story sharing tips.

Distribute Materials

The Epilepsy Foundation has created several materials to help raise awareness for SUDEP.

Our Managing Epilepsy and Seizures and #DareTo Say SUDEP Infographics are great pieces that provide information in an easy to understand and empowering format. You can order these materials by searching “infographic” in the Epilepsy Foundation online store. There is a nominal charge to cover shipping and handling. We recommend giving these materials to people with epilepsy, caregivers, or medical professionals so they can gain knowledge and share then with others.

Contact Health Care Providers

Bereaved families commonly report that they didn’t know about the risk for SUDEP before they lost their loved one. Writing a letter to or visiting with health care providers to share your perspective and pass along resources are effective ways to drive those conversations. Read this letter as an example of a powerful letter, and here is a template you can use when writing your letter.

Encourage health care providers to use the existing SUDEP educational webinars and presentations. In addition to contacting providers, you may want to partner with your local Epilepsy Foundation and ask local epilepsy centers to include SUDEP information on their websites or to host medical education training on SUDEP, such as in a SUDEP Grand Rounds.

Contact Death Investigators

An important audience for education about SUDEP is the death investigator community. To accurately count the number and distribution of SUDEP cases, determine its cause, and — ultimately — seek opportunities for prevention, more accurate forensic data are needed. You can use this template to send a letter to the death investigators in your community, and let them know about the Investigating Death in Epilepsy Patients Webinar and the Field Investigator for Epilepsy Deaths Form.

While some states have passed SUDEP legislation, our experience has found that collaborative education efforts have been more effective. Learn more about our SUDEP Surveillance efforts.

Participate in Research

Another way to help raise awareness is to support research into the causes of SUDEP and epilepsy mortality.

We encourage all bereaved families to sign up for the North American SUDEP Registry (NASR). The multicenter NASR provides clinical data, DNA, and brain tissue for the scientific community to study. Once consent is given, the NASR team can obtain all records and any biospecimens that the family wishes to share.

We also recommend families report epilepsy-related deaths to the Epilepsy Deaths Register. Registration takes around 5 minutes, then you can choose whether to continue on to a survey and provide further detailed information. The Epilepsy Deaths Register is aimed at capturing the experiences of bereaved families as part of an international collaboration that will compare experiences.

Learn more about SUDEP Research efforts.

Participate in Events

We always encourage families to participate in Epilepsy Foundation events to honor their loved one and to receive support from the epilepsy community. Each year we have a memorial wall at the National Walk for Epilepsy. Even if you can’t attend in person, you can have a flag placed on the wall that is decorated in honor of your loved one. You can also find local walks and events by contacting your local Epilepsy Foundation.

Other Foundation events, like Lemonade for Livy or one of the many Athletes vs Epilepsy events, also provide opportunities for connecting with others, raising awareness, and supporting the Foundation’s mission.

Raise Awareness and Funds

The mission of the Epilepsy Foundation SUDEP Institute is to prevent SUDEP and support people confronting the fear and loss caused SUDEP. Your donation ensures that we continue to carry out education and awareness programs, drive research, and provide support for bereaved families, as well as give help and hope to the 3 million people living with epilepsy and their families. You can support the SUDEP Institute by making a direct donation or creating a memorial page.

Learn about the many other ways to give.

Support Epilepsy Legislative Efforts

The Epilepsy Foundation is committed on behalf of people with epilepsy, their family members, and caregivers, to advocating for funding for epilepsy programs, research, and a cure; supporting policies that promote research and innovation; improving access to and coverage of quality care and essential services; and protecting the rights of individuals with disabilities. These broad goals guide our federal and state advocacy activities.

Join our Speak Up, Speak Out advocacy network and help us raise awareness with public officials about the public policy issues important to the epilepsy community by sharing your story. Visit our SUDEP Advocacy page.

Stay Connected

Keep updated on special events and programs by signing up for our SUDEP Institute bereavement support newsletter and the weekly epilepsy.com newsletter.

Authored By: 
Cyndi Wright
Authored Date: 
Thursday, August 18, 2016