Bereavement Support
You Are Not Alone.
Too many of us have learned in devastating fashion that epilepsy can result in the loss of a loved one. Each loss is heartbreaking and tragic. Although we are not professional grief counselors, we do have experience to share, and we do understand the value and importance of listening. On this page we have compiled resources and organizations that provide beneficial information for those who have lost a loved one. Also be sure to read about the Partners Against Morality in Epilepsy (PAME) collaboration, which Danny Did is a founding member of.
If you would like to commemorate the person you lost on Danny Did social media post, please reach out to info@dannydid.org. Above all, know that we are deeply sorry for your loss, and that our work will always honor and celebrate the life of your loved one.
Grief in Epilepsy: Learn From Loss
This webinar explored the factors that make epilepsy-related deaths unique from other disease states. Hosted by Partners Against Mortality in Epilepsy (PAME) and moderated by our DDF President Tom Stanton, this webinar features a panel of parents who have lost a child, as well as tips on how to best support them.
The Epilepsy Foundation of America offers counseling and support for people who have lost a loved one to epilepsy, as well as a range of support and educational services for families who are living with epilepsy. For information on EFA bereavement support, visit this webpage, or email sudep@efa.org. There is also a hotline at 800-332-1000 to contact for support.
For families in the United Kingdom, SUDEP Action is a leading advocacy organization that offers support for bereaved families and for those who are living with epilepsy.
NORTH AMERICAN SUDEP REGISTRY (NASR)
Coping with the unexpected loss of a loved is extremely difficult, especially while so many questions about SUDEP and other forms of epilepsy mortality remain unanswered. Current research is ongoing to understand how and why these deaths occur. One way to honor your late loved one is to include them in the North American SUDEP Registry (NASR). The goal of NASR is to encourage accurate recognition and reporting of SUDEP-related deaths, and to provide researchers with a body of data that will result in a greater understanding of SUDEP, its causes, and possible means of reducing patient risk.
If you would like to learn more about the NASR Project ongoing at the New York University School of Medicine, click here, call (855) 432-8555, or email at info@sudep-registry.org.
To accurately count the number of epilepsy-related deaths that occur, understanding and recognition of SUDEP by medical examiners and coroners is critical. This position paper was authored by the National Association of Medical Examiners (NAME) and published in Epilepsia with the title, “Recommendations for the investigation and certification of deaths in people with epilepsy.”
SUDDEN DEATH IN THE YOUNG CASE REGISTRY
The work of the Sudden Death in the Young (SDY) case registry is being done by National Institutes of Health (NIH), the Centers for Disease Control (CDC) and at partner centers in 18 states that are collecting information on cases of sudden death in the young, data that will inform research. These cases may involve any type of sudden death, including cases of including SUDEP. To learn more or to get involved, visit www.sdyregistry.org.
Grief- Related Podcasts
Below is a list of podcasts that others have found helpful.
- All There Is with Anderson Cooper
- Anderson Cooper takes us on a deeply personal exploration of loss and grief. He starts recording while packing up the apartment of his late mother Gloria Vanderbilt. Going through her journals and keepsakes, as well as things left behind by his father and brother, Cooper begins a series of emotional and moving conversations about the people we lose, the things they leave behind, and how to live on – with loss, with laughter, and with love. Listen on Apple Podcasts and Spotify.
- Here After with Megan Devine
- Each week on Here After, author and psychotherapist Megan Devine explores the kind of hope you get from telling the truth about how hard things are, the hope you get from keeping your eyes open and refusing to let your heart shut down. Real world hope, with guests from the front lines of grief, loss, trauma, education and activism. Listen on Apple Podcasts, Spotify, and iHeartRadio.
- Sorry, I’m Sad with Kelsie Snow
- When her husband was diagnosed with Amyotrophic Lateral Sclerosis (ALS) and given 6-12 months to live, Kelsie Snow avoided other people’s sad stories as a rule, but as time wore on, she found herself seeking them out. Snow, a former sports reporter for The Boston Globe, Los Angeles Times and St. Paul Pioneer Press, began writing about her life on her website and learned there is comfort in knowing how others have loved, lost and kept going. Listen on Apple Podcasts and Spotify.
- Terrible, Thanks for Asking with Nora McInerny
- Nora McInerny lost her husband, her father, and her unborn second child in one catastrophic year. Now, she writes about how we handle grief, and our willingness to ignore it to save face. Her podcast explores what it means to be honest about our mental health at the moment, rather than pretending like everything is ok. Listen on Apple Podcasts.
- Unlocking Us with Brené Brown
- This podcast is about mental health and the “conversations that unlock the deeply human part of who we are, so that we can live, love, parent, and lead with more courage and heart.” Topics include loneliness, living with faith, and storytelling. Their episode with grief expert David Kessler is a good place to start. Listen on Spotify.
- Grief Out Loud from The Dougy Center
- This podcast from the Dougy Center encourages people to talk about their grief out loud, in public, and they’re here to support you while you do it. Episodes feature children, teens, and anyone who’s dealt with grief and willing to share their story. Listen on Apple Podcasts and Spotify.
- What’s Your Grief?
- This grief support podcast is here to provide resources, personal stories, and coping skills to those grieving. It comes from the mental health website of the same name and is hosted by mental health professionals Eleanor Haley and Litsa Williams. Listen on Apple Podcasts and Spotify
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The Danny Did Foundation is a not-for-profit corporation organized in the state of Illinois and recognized by the Internal Revenue Service as a 501©(3) tax-exempt organization. Our Tax ID number is 27-1642251. We hold a Gold Level charity rating from Guidestar.https://www.guidestar.org/