Overview

The 2018 Partners Against Mortality in Epilepsy took place in Alexandria, VA, from June 14–16, 2018. From the first PAME meeting in 2012, this innovative conference has brought together epilepsy researchers, clinicians, advocacy organizations, people living with and bereaved by epilepsy, and their families from around the world. This fourth PAME meeting boasted the largest number of attendees of all PAME events. In an effort to continue to grow research and advocacy in the field of epilepsy mortality, two-thirds of invited presenters had not previously presented at a PAME meeting. Collaboration continued to be a significant thrust, with strong partnerships that included the American Epilepsy Society, Epilepsy Foundation, CDC, NINDS, and Citizens United for Research in Epilepsy coming to the table to build the meeting. Conference Summary.

Plenary 1: Chairs’ Plenary — Combating Mortality in Epilepsy: Looking Back and Looking Ahead

Panel Discussion:

  • Gardiner Lapham, RN, M.P.H.
  • William Gaillard, M.D.
  • Tom Stanton, M.P.P.
  • Elizabeth Donner, M.D.
  • George Richerson, M.D., Ph.D.
  • Samden Lhatoo, M.D.

Plenary 2: Basic Mechanisms

Family/Patient Speaker: 

  • Alison Kukla

Panel Discussion:

  • Alfred George, Jr., M.D.
  • Onur Afacan, Ph.D.
  • Gordon Buchanan, M.D., Ph.D.
  • George Richerson, M.D., Ph.D.

Plenary 3: Creating Urgency & Change — The Role Advocacy Plays in Understanding and Preventing Mortality

Family/Patient Speaker: 

  • Sally Schaeffer

Panel Discussion:

  • Gardiner Lapham, RN, M.P.H.
  • Jane Hanna, M.A., OBE
  • Rosey Panelli, Ph.D.
  • Jeanne Donalty
  • Orrin Devinsky, M.D.
  • Tom Stanton, M.P.P

Breakout 1: Closing The Loop of Communication

Panel Discussion:

  • Rajesh Ramachandran Nair, M.D., MBBS
  • Sarah Friebert, M.D.
  • Jennifer Walters; Doug Simmons

Breakout 2: Functional Biomarkers For SUDEP: A Discussion from the Bedside To The Bench

Panel Discussion:

  • Elizabeth Donner, M.D.
  • Stiliyan Kalitzin, Ph.D.
  • Peter Carlen, M.D.
  • Berj Bardakjian, Ph.D.

Plenary 4: Nocturnal Supervision, Seizure Detection and SUDEP Prevention. What is the Evidence?

Family/Patient Speaker: 

  • John Popovich

Panel Discussion:

  • Daniel Friedman, M.D.
  • Brian Litt, M.D.
  • Rainer Surges, M.D.
  • Roland Thijs, Ph.D.
  • William Heetderks, M.D., Ph.D.

Breakout 3: Pathophysiology Roundtable

Panel Discussion:

  • Jeff Noebels, M.D., Ph.D.
  • Jack Parent, M.D.
  • Lori Isom, Ph.D.
  • Kristina Simeone, Ph.D.

Breakout 4: New Onset Refractory Status Epilepticus (NORSE): An Emerging Cause of Epilepsy Mortality

Family/Patient Speaker: 

  • Nora Wong

Panel Discussion:

  • Nicholas Abend, M.D., MSCE
  • Orrin Devinsky, M.D.
  • Marissa Kellogg, M.D., M.P.H.

Plenary 5: Epilepsy Mortality Beyond SUDEP

Family/Patient Speaker: 

  • Becca Rudolph-Setzer

Panel Discussion:

  • Lawrence Hirsch, M.D.
  • David Thurman, M.D., M.P.H.
  • Andres Kanner, M.D.

Breakout 5: Considering a Device: Questions To Ask and User Feedback

Panel Discussion:

  • Daniel Friedman, M.D.
  • Tom Stanton, M.P.P.
  • Lauren Knepper, RN
  • Sylvia Palm
  • Kimberly Brorson
  • Sonya Dumanis, Ph.D.

Breakout 6: Evidence-Based Self-Management Research to Address Risk Factors for Premature Mortality In People With Epilepsy

Panel Discussion:

  • Barbara Jobst, M.D., Ph.D.
  • Cam Escoffery, Ph.D., M.P.H.
  • Martha Sajatovic, M.D.
  • Tanya Spruill, Ph.D.
  • Dilip Pandey, M.D., Ph.D.

Breakout 7: Imaging & Genetics Roundtable

Panel Discussion:

  • Carl Faingold, Ph.D.
  • Alica Goldman, M.D., Ph.D.