Overview

The second Partners Against Mortality in Epilepsy conference occurred in Minneapolis, Minnesota, on June 19–22, 2014. The presenters summarized the latest research on death in people with epilepsy, especially sudden unexpected death in epilepsy (SUDEP). Speakers included some of the most prominent scientists in the field. 

This conference was made possible by the hard work of many partner organizations and agencies, including the American Epilepsy Society, Epilepsy Foundation, Citizens United for Research in Epilepsy (CURE), Finding a Cure for Epilepsy and Seizures, Danny Did Foundation and National Institute of Neurological Disorders and Stroke. Ms. Cyndi Wright (SUDEP Institute of the Epilepsy Foundation) and Mr. Jeffrey Melin (American Epilepsy Society) coordinated the conference. 

 

Overview of Death in Epilepsy

Moderator: David J. Thurman, MD, MPH

Causes of Epilepsy That Also May Cause Death

  • Speaker: Roland D. Thijs, MD, PhD

Risk of Injury and Death from Accidents in People with Epilepsy

  • Speaker: W. Allen Hauser, MD

New Definition of Sudden Unexpected Death in SUDEP

  • Speaker: Dale C. Hesdorffer, PhD

Causes of Sudden Unexpected Death in Epilepsy Related to Breathing

Moderators:

  • George B. Richerson MD, PhD
  • Lisa M. Bateman, MD, FRCPC

Biological Processes Involved in Breathing During Seizures

  • Speaker: Lisa M. Bateman, MD, FRCPC

Sudden Unexpected Death in Epilepsy, Sudden Infant Death Syndrome, and Serotonin

  • Speaker: George B. Richerson, MD, PhD

Breathing Rhythm Control and Long QT Genes

  • Speaker: Daniel Mulkey, PhD

Adenosine, a Brain Chemical in the Brainstem

  • Speaker: Detlev Boison, PhD

Description of Laboratory Mice that Stop Breathing During Seizures

  • Speaker: Hua–Jun Feng, PhD

Monitoring Causes of Death in Epilepsy and Guidelines for Health Care Providers

Moderator: Orrin Devinsky, MD

Speakers:

  • Lindsey Thomas MD
  • Vicky Whittemore PhD
  • Cynthia Harden MD
  • Cyndi Wright, BS

Causes of Sudden Unexpected Death in Epilepsy Related to Sleep and Wakefulness

Moderators:

  • Gordon F. Buchanan, MD, PhD
  • Hal Blumenfeld, MD, PhD

The Biology of Shutdown and Wakefulness Systems During Seizures

Speaker: Hal Blumenfeld, MD, PhD

Processes of Brainstem Invasion Based on Studies in People and Laboratory Mice

  • Speaker: Brian Dlouhy, MD

Serotonin, Breathing after Seizures, Wakefulness, and Sleep

  • Speaker: Gordon F. Buchanan, MD, PhD

Role of Adenosine in Sleep and Cessation of Breathing after Seizures

  • Speaker: Carl Faingold, PhD

Abstract Presentation Winner–Association Between Lying Down and Sudden Unexpected
Death in Epilepsy

  • Speaker: James Tao, MD, PhD

Deaths in Epilepsy Not Due to Sudden Unexpected Death in Epilepsy

Moderator: Dale C. Hesdorffer, PhD

Status Epilepticus and Acute Symptomatic Seizures

  • Speaker: Dale C. Hesdorffer, PhD

Frequency and Risk Factors for Suicide in Epilepsy

  • Speaker: Nathalie Jette,MD

Heart Disease, Epilepsy, and Antiepileptic Drugs

  • Speaker: Scott Mintzer, MD

Failure to Take Epilepsy Drugs Correctly and Risk of Death in Epilepsy

  • Speaker: Daniel Friedman, MD

Causes of Sudden Unexpected Death in Epilepsy Related to the Autonomic Nervous System and Heart Function

Moderators:

  • Jeffrey W. Britton, MD
  • Jeffrey Noebels, MD, PhD

Structure and Functions of Heart Control by the Central Autonomic Nervous System

  • Speaker: Jeffrey W. Britton, MD

Studies of Dravet Syndrome in Stem Cells from Patients and Genetically Engineered Mice

  • Speaker: Lori L. Isom, PhD

Mutations in Sodium Channel Genes, Stoppage of Heartbeat, and Deadly Seizures in
Laboratory Mice with Dravet Syndrome

  • Speaker: Franck Kalume, PhD

Effects of Seizures on the Heart

  • Speaker: Rainer Surges, MD

Non–inherited Risk to the Heart and Potential Treatment to Protect the Heart

  • Speaker: Yi–Chen Li, MD

Epilepsy and Grief

Moderator: Jeanne Donalty

Use of Advocacy to Heal from Grief

  • Speaker: Lisa Riley

From Normal to Extreme Grief: Recognizing the Causes

  • Speaker: Andres Kanner, MD

Grief Counseling or Not: Navigating the Grief Journey

  • Speaker: Linda Coughlin–Brooks, RN, BSN, CT

Referring People to Grief Support Services: Resources and Recommendations

  • Speaker: Paul Scribner, MSW, LCSW–C

Genetic Causes of Sudden Unexpected Death in Epilepsy

Moderators:

  • Daniel Lowenstein, MD
  • Alica M Goldman, MD, PhD

Use of Genomics to Study Sudden Unexpected Death in Epilepsy in People

  • Speaker: Alicia M Goldman, MD, PhD

Lessons from the Epilepsy Phenome/Genome Project and Epi4K

  • Speaker: Daniel Lowenstein, MD for the EPGP and Epi4K Investigators

Finding and Confirming Genes Linked to Sudden Unexpected Death in Epilepsy in
Laboratory Mice

  • Speaker: Jeffrey L. Noebels, MD, PhD

Sodium Channel Mutations and Sudden Unexpected Death in Epilepsy

  • Speaker: Miriam Meisler, PhD

Abstract Winner Presentation: Studying Sudden Unexpected Death in Epilepsy and Stress
in Rats that Develop Epilepsy Due to Gene Mutations

  • Speaker: Srinivasa Kommajosyula

Sudden Unexpected Death in Epilepsy: Devices, Treatments, and Prevention Strategies

Moderator: Elizabeth J. Donner, MD, FRCPC

Accuracy and Usefulness of Devices

  • Speaker: Daniel Friedman, MD

Devices to Monitor Seizures: What to Know and What to Ask

  • Speaker: Tom Stanton

Night–Time Supervision and Stimulation During Seizures

  • Speaker: Lisa Bateman MD

Changing Behavior

  • Speaker: Martha Sajatovic, MD

SUDEP Prevention from a Public Health Perspective: Changing Behaviors

  • Speaker: Tanya Spruill, PhD

How Organizations Are Increasing Understanding of Sudden Unexpected Death in Epilepsy

Moderators:

  • Jeffrey Buchhalter MD, PhD
  • Cyndi Wright, BS