The SUDEP Institute is proud to partner with organizations to ensure accurate information on sudden unexpected death in epilepsy (SUDEP) is available.

PAME Conference

PAME-logo-color.jpg

The multi-day Partners Against Mortality in Epilepsy (PAME) Conference is the only meeting focused exclusively on increasing understanding of mortality in epilepsy, including SUDEP and suicide. This program brings together clinical and basic science professionals, people living with epilepsy, and their families to advance research, facilitate collaborations, engage people living with epilepsy to participate in critical research, and increase urgency around an overlooked and underfunded public health issue, while building understanding and support for each other.

2018 PAME Conference

The next PAME Conference will be held June 24-16, 2018, in Alexandria, Virginia.

Conference Objectives:

  • Critically evaluate the incidence, risk factors, and prevention strategies for mortality in epilepsy
  • Describe the progress made and future directions for research regarding mortality in epilepsy
  • Provide opportunities for collaborations among stakeholders, including people with epilepsy, researchers, families, clinicians, and advocates
  • Gain skills in advocacy to build public awareness and impact public policy regarding epilepsy mortality

Learn more about the conference here.

Researchers are invited to submit their epidemiological, basic, translational, or clinical research that improves understanding of mortality in epilepsy, including suicide and sudden unexpected death in epilepsy (SUDEP).

  • Abstracts must be received by Monday, March 19, 2018, at 11:00 p.m. EST.
  • Accepted abstracts will be presented as posters at the 2018 PAME Conference.

Find out how to submit an abstract here.

Past PAME Conferences

  • In June 2012, PAME held its first three-day conference. Devoted predominantly to SUDEP, this conference brought together doctors, scientists, families and advocates from around the world to advance awareness and understanding of epilepsy mortality and SUDEP.
  • In June 2014 the second the second PAME conference was held in Minneapolis, MN. Read the summary to learn about current research on potential causes of mortality in people with epilepsy, including respiratory issues, sleep, cardiac failure, and genetics.
  • Download the presentations and materials from the third PAME held in June 2016.

PAME Webinar Series

PAME periodically hosts webinars to provide information on topics including medical cannabis, rare epilepsies, SUDEP research, talking about SUDEP, and more.

SUDEP Counseling: Risk Management for Clinicians

CME and CNE Webinar

Learning objectives for this two‐part webinar:

Counsel patients and families regarding SUDEP as appropriate for the level of risk related to the individual patient's epilepsy, increasing patient and family understanding of the disorder and improving adherence to treatment recommendations.

Incorporate established techniques for counseling patients and families in discussions of epilepsy and its potential consequences, providing opportunities for improved communications and patient/family understanding of risks associated with epilepsy.

A total of 3.5 CNE/CME credits available.

Understanding Sudden Unexpected Death in Epilepsy: How Can the Risk Be Minimized?

CME and CE WebinarSUDEP_Medscape.png

Presented by Michael R. Sperling, MD and Daniel Friedman, MD, MSc this MedScape webinar is intended for neurologists, primary care physicians (family practice and internal medicine), and nurses. The goal of this activity is to provide a recap of the most relevant SUDEP data from the 2015 AES meeting.

Upon completion of this activity, participants will be able to:

  1. Summarize the available and emerging clinical data in sudden unexpected death in epilepsy (SUDEP)
  2. Identify strategies for managing seizure treatment to minimize the risk of SUDEP

Epilepsy's Fatal Potential Radio Broadcast

On this edition of Iowa Public Radio's River to River, Ben Kieffer talks with one of the University of Iowa's lead SUDEP researchers, Dr. George Richerson, as well as Roxanne Cogil, Director of Iowa Epilepsy Services at the Epilepsy Foundation and Teresa Elliott, who lost her son to SUDEP.

Investigating Deaths in Epilepsy Patients Webinar

Recognizing and accurately reporting epilepsy mortality is a critical step in understanding the causes and how to prevent epilepsy related deaths. To address this, we developed the Investigating Death in Epilepsy Patients Webinar. This unprecedented partnership led by the SUDEP Institute brought together all national death investigation organizations as well as the CDC, NIH, and the North American SUDEP Registry. Continuing Medical Education credit was provided by NYU School of Medicine. Post webinar evaluations demonstrated increases in knowledge of epilepsy mortality, awareness about how to accurately perform death scene investigations and autopsies, and understanding about how to fill out the death certificate so epilepsy deaths can be tracked. Share this free webinar with death investigators in your community.

Epilepsy Mortality and Complicated Grief

Hosted by Linda Coughlin Brooks and Katherine Sheer, this webinar is targeted at grief counselors, therapists, social workers, and advocates. It will explain how epilepsy-related deaths often present unique challenges and will prepare participants to offer the support bereaved families need.

This webinar was hosted May 21, 2014 through a partnership with the Association for Death Educators and Counselors and is now available for download on demand.

PAME 2014 Affiliate Attendess

Learn More

Authored Date: 
01/2018
Reviewed By: 
Joseph I. Sirven, MD | Patricia O. Shafer, RN, MN
on: 
Tuesday, November 12, 2019