Grief and Death in Epilepsy: Learning From Loss

Mortality in epilepsy is impacted by factors that often are not present in other disease states, including the suddenness of death, and the common scenario where the risk of death was never discussed. This webinar explored grief among those who have lost a loved one to epilepsy, with a focus on the arc of grief over time and what “interventions” were most helpful in the time following the death of a loved one.

Speakers and panelists included:

Jeffrey Buchhalter MD, PhD, PAME Executive Committee

Tom Stanton, Executive Director of Danny Did

Sarah Friebert, MD, Director, Pediatric Palliative Care; Akron Children’s Hospital

Rajesh Ramachandran Nair, MD, FRCPC, Medical Director, Comprehensive Pediatric Epilepsy Program, McMaster Children’s Hospital & McMaster University

Sally Schaffer, parent

Edana Perry, parent and Co-Founder of the Kayla Ross Perry Memorial Foundation

Michael Schafer, parent and Co-founder of HOPE4SUDEP (website and fund-raising foundation in honor of Cameron Benninghoven); Lay Member Research Grant Committee for CURE

Access Dr Friebert’s presentation

From our parent panelists “Shared Lessons on Grief and Death in Epilepsy“