Background

SUDEP is now recognized as the leading cause of mortality associated with epilepsy, excluding status epilepticus and underlying etiologies. Despite the importance of the problem and the implications for intervention, SUDEP had not received widespread professional attention in the United States prior to the mid-2000s. Awareness and interest in SUDEP has increased and so has the demand for information about cutting-edge research, effective patient-provider communication, and opportunities for multi-stakeholder collaboration.

The PAME conference was created to fill that need and to provide a unique opportunity for diverse stakeholders to come together to better understand, address, and ultimately reduce mortality in epilepsy.

Practice Guideline: Sudden Unexpected Death in Epilepsy Incidence Rates and Risk Factors (2017) - Co-developed by the American Academy of Neurology and the American Epilepsy Society

2018 PAME Steering Committee

The 2018 Steering Committee includes representatives from varying organizations and perspectives (clinical, research, patient, and family advocate) who are working together to create dynamic and inclusive meeting content.

Elizabeth Donner, M.D., Hospital for Sick Children – Co-chair,

George Richerson, M.D., Ph.D., University of Iowa – Co-chair

Tom Stanton, MPP, Danny Did Foundation – Co-chair

Brandy Fureman, Ph.D., Epilepsy Foundation

Liz Higgins, Citizens United for Research in Epilepsy

Eileen Murray, MM, American Epilepsy Society

Steve Owens, M.D., MPH, MA, Epilepsy Foundation

Sally Schaeffer, Epilepsy Foundation SUDEP Institute

Stakeholder Objectives

Clinicians

  • Strengthen the capacity of health care providers to discuss epilepsy-mortality broadly and SUDEP specifically, identify risk factors, communicate prevention strategies
  • Address gaps in care for people with epilepsy and provide strategies for improvement

Researchers

  • Identify progress made in epilepsy mortality and SUDEP research and direction for future research as well as funding and collaboration opportunities
  • Build collaborations across medical disciplines and among families/advocates to bolster research opportunities and participation

Families/Advocates/Lay Organizations

  • Provide a forum for people with epilepsy and their families to learn about the latest in epilepsy mortality, especially SUDEP research.
  • Enable people with epilepsy, families and lay organizations to advance SUDEP awareness and education by facilitating collaborations between support groups, funding sources, health care professionals, and others, both nationally and internationally.
  • Allow opportunity for families living with and bereaved by epilepsy to share their stories and support one another.