Partners Against Mortality in Epilepsy | Pame Conference 2021 - Partners Against Mortality in Epilepsy

Overview

This meeting, and the broader PAME collaboration, boldly unites epilepsy researchers, health care providers, nonprofit professionals, and people impacted by epilepsy, including those who are bereaved. This was the 5th in-person PAME meeting and was shorter in length and was held in conjunction with the American Epilepsy Society (AES) Annual Meeting. Previous PAME meetings were 2.5 days long and held during the summer. We changed the timing and structure of the PAME meeting to broaden our network and make meeting content more accessible to new audiences.

Plenary Session Recordings

The PAME meeting recordings are available below. We also encourage you to visit the virtual PAME Memory Wall that honors loved ones lost to an epilepsy-related cause. The smiling faces and sweet memories remind us of our work’s urgency to understand and prevent epilepsy-related mortality. View the PAME Memory Wall.

Opening Sessions

Gardiner Lapham, RN, MPH
Jeffrey Buchhalter, MD
Tom Stanton

Meeting in the middle? Bidirectional lessons for SUDEP from basic and clinical research today

The basic science plenary session will cover lessons from either the basic science side or clinical side and evaluate how well they translate from bench to bedside and back. We will consider what else needs to be known to make smooth translation, focusing on spreading depolarization/circuit mechanisms, biomarkers (including postictal generalized EEG suppression and heart rate variability), and neurotransmitters. A panel discussion and questions from the audience will close the session.

Moderators:

Gordon Buchanan, MD, Ph.D., University of Iowa
Franck Kalume, Ph.D., Seattle Children’s Research Institute

Faculty:

Detlev Boison, Ph.D., Rutgers University
Isamu Aiba, Ph.D., Baylor College of Medicine
Mark Stewart, MD, Ph.D., SUNY Downstate Health Sciences University

Studying SUDEP – best practices for epidemiologic and intervention studies

This plenary session will explore important methodological considerations for studying SUDEP, including intervention trial design, selecting a study population, and appropriate outcomes and biomarkers. Speakers will also explore efforts to use data from electronic medical records to study SUDEP, as well as the latest in SUDEP surveillance. A panel discussion and questions from the audience will close the session.

Moderator:

Elizabeth J. Donner, MD, MSc, FRCPC, University of Toronto

Faculty:

Sharyn Parks-Browne, Ph.D., MPH, Centers for Disease Control and Prevention
Zach Grinspan, MD, MS, Weill Cornell Medicine
Professor Philippe Ryvlin, University Hospital of Lausanne (CHUV), Switzerland

Navigating the psychological impacts of epilepsy on the individual & family – Living with uncertainty and surviving loss

This session will discuss the mental health challenges of living with epilepsy, as well as the challenges associated with the complicated grief of losing a loved one. New research will be presented that sheds light on understanding grief, along with improved tools to better diagnose and manage anxiety and depression and reduce the risk of suicide. A panel discussion will close the session with diverse perspectives on the need for increased focus on mental health within the epilepsy community.

Moderators:

Gardiner Lapham, RN, MPH, BAND Foundation
Tom Stanton, Danny Did Foundation

Faculty:

Heidi M. Munger Clary, MD, MPH, FACNS, Wake Forest School of Medicine
Madison Berl, Ph.D., ABPP-CN, Children’s National
Refugio Sepulveda. Ph.D., MPH, MPA, University of Arizona
Hannah Whitten, Whitten-Newman Foundation
Jeffrey Buchhalter, MD, Epilepsy Learning Healthcare System, Pediatric Epilepsy Learning Healthcare System
Alison Kukla, MPH, Epilepsy Foundation

Hot Topics in Mortality in Epilepsy Research

This plenary session featured short oral presentations of mortality-related abstracts submitted for the PAME Meeting or AES Annual Meeting, focusing on research conducted by early career scientists. Basic science and clinical researchers selected to present the latest on mortality in epilepsy for this session received special recognition from PAME.