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Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)

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Free Webinar: Grief in Epilepsy, Learning From Loss

PAME-logo-color-2016
Tuesday, March 02, 2021
02:00 PM - 03:00 PM


This free, one-hour will include an overview of grief, a report on a recent survey, and a panel discussion of parents who lost a child to an epilepsy-related cause. Families, advocates, and professionals are welcome to participate.

DETAILS: 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 free webinar from Partners Against Mortality in Epilepsy (PAME) will explore grief among those who have lost a loved one to epilepsy, with a focus on the arc of grief over time, the impact of whether disclosure took place prior to death and what "interventions" were most helpful in the time following death of a loved one.

Danny Did is proud to be a part of this important conversation.

Speakers and panelists include:

  • Jeffrey Buchhalter MD, PhD, PAME Executive Committee
  • Tom Stanton, Executive Director of Danny Did Foundation
  • 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
  • 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

The webinar will take place via Zoom, and will include an overview of grief, a report on a recent survey, and a panel discussion of parents who lost a child to an epilepsy-related cause. Families, advocates, and professionals are welcome to participate.


REGISTRATION: Free at this webpage. A Zoom link will be shared once registration is complete.

QUESTIONS: Please email PAME@aesnet.org with questions.

 

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