It takes a village: How family-led organizations are changing the face of SUDEP prevention

10/05/2023 | 3:00 pm EST - 4:00 pm EST

In recent years, there has been growth in the number of organizations created in memory of someone who has died from SUDEP. Join us for a special conversation with representatives from family-led organizations that are urgently working to prevent epilepsy-related deaths. What are their biggest priorities, where can collaboration speed progress, and how can we learn from each other?

Sudden Death in Epilepsy (SUDEP): Common Misconceptions

04/28/2023 | 2:00 pm EST - 3:00 pm EST

Misunderstandings about SUDEP abound and impact how providers discuss SUDEP risk, how researchers track and investigate the problem, how we think about prevention and much more.  Dr. Orrin Devinsky, a leader in SUDEP research, will challenge our thinking and help identify misunderstandings so we can more effectively study and prevent SUDEP.  This one hour webinar is geared toward health care providers, researchers, people with epilepsy and other interested parties. Moderated by Gardiner Lapham Faculty:
  • Dr Orrin Devinsky, Professor of Neurology, Neurosurgery and Psychiatry – New York University School of Medicine
  • Lou Brossard, Bereaved Parent

Assess, Act & Empower: A NEW Toolkit to Save Lives

03/28/2023 | 1:00 pm EST - 2:00 pm EST

In 2022, the Child Neurology Foundation convened a group of people with lived experience and experts in the epilepsy community from the US, Canada, and the UK to collaboratively create the Preventing Epilepsy Deaths: Clinician Toolkit. The goal of the behavior change toolkit is to educate clinicians on how to talk with families and people living with epilepsy about addressing epilepsy mortality risk factors. Join PAME for this free 60-minute webinar to learn how this new resource can improve provider and patient communication and reduce the risk of premature epilepsy mortality. Moderated by Tom Stanton, Danny Did Foundation Speakers: -Dr Shawna Benard, University of Southern California -Dr Daniel Freedman, Dell Medical School -Cyndi Wright, Child Neurology Foundation

International Epilepsy Awareness Day 2023

02/22/2023 | 1:00 pm EST - 2:00 pm EST

International Epilepsy Awareness Day 2023: Understanding the Global Burden of Epilepsy Mortality and the Importance of Reducing Stigma in Low Income Countries Feb 22 at 1:00pm ET Join PAME for this webinar calling attention to International Epilepsy Awareness Day 2023 and shining a light on the risks associated with epilepsy in lower income countries. Dr. Arjune Sen from the University of Oxford will provide an overview of epilepsy mortality globally. Action Amos, Vice President for Africa for the International Bureau for Epilepsy, will speak about how people with epilepsy in Africa face stigma and greater risk for mortality. A discussion will follow on how we can work to promote change.

SUDEP Communication: Understanding the Caregiver Perspective and Developing a SUDEP Conversation Guide

10/11/2022 | 12:00 pm EST - 1:00 pm EST

This webinar will feature Monica Lemmon, MD, Assistant Professor of Pediatrics within the Division of Pediatric Neurology at DUKE, speaking about the development of a SUDEP conversation guide.

SUDEP Biomarker Challenge: What Did We Learn?

07/13/2022 | 1:00 pm EST - 2:00 pm EST

Between 2015-2020, the Epilepsy Foundation hosted a $1,000,000 SUDEP Biomarker Challenge that asked researchers and innovators to find predictive biomarkers with which to identify people at risk for SUDEP or life-threatening seizures which compromise cardiac or respiratory function. This webinar will review the proposed areas of work, discuss what was learned from the Challenge, and the future planned steps. Speakers will include Drs. Jeff Buchhalter (pediatric epileptologist and Adjunct Professor of Pediatrics, University of Calgary), Brandy Fureman (Chief Outcomes Officer, Epilepsy Foundation) and Kathleen Farrell (Vice President of Public Health and Outcomes, Epilepsy Foundation).

Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research

06/14/2022 | 4:00 pm EST - 5:00 pm EST

Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age 1,2. While lack of seizure control and seizure severity are the most common concerns for increased risk of SUDEP, there is also a concern that certain genetic mutations may increase SUDEP risk.     

Devices for Epilepsy: Current Options and the Future Pipeline

05/24/2022 | 1:00 pm EST - 2:00 pm EST

Devices that alert to seizure activity are in their early stages, but there is already a clear demand for their use by patients and caregivers. This webinar will assess the pros and cons of the current state of seizure detecting devices; provide objective considerations for patients and caregivers who are selecting a device; and offer information on the future direction of devices, with a preview of technologies in the pipeline.

SUDEP Biomarkers: How Close Are We?

03/29/2022 | 4:00 pm EST - 5:00 pm EST

Join SUDEP researcher and epilepsy provider, Dr. Orrin Devinsky, as he moderates a session with leading international researchers on biomarkers and how close we really are to understanding what puts an individual at greater risk for SUDEP.

Key Learnings and Next Steps From the NIH funded Center for SUDEP Research

10/25/2021

The Center for SUDEP Research (CSR) was NINDS' most significant investment to date focused on advancing understanding of SUDEP. As a large, 5-year, multi-disciplinary, and multi-center study - the CSR promised to catalyze research on SUDEP and dramatically enhance our understanding of this poorly understood and devastating phenomenon. What did it achieve and where do we go from here?

Sleep, Night, and SUDEP

07/16/2021

Sudden unexpected death in epilepsy (SUDEP) is the leading cause of death in patients with refractory epilepsy. Though we are learning a great deal about SUDEP, it still occurs far too often. It is recognized that SUDEP happens frequently during the night, possibly during sleep. Understanding the connection between night, sleep, and SUDEP may provide clues to improving preventive measures. This webinar reviewed the latest in basic science and clinical research on sleep, circadian rhythms, and SUDEP.

Understanding Disparities in Epilepsy Mortality: Global and National Perspectives

05/18/2021

This PAME webinar explored racial, ethnic, economic, and geographic differences in epilepsy-related mortality in the U.S. and globally.  Where can we look to make progress?  The following panelists will shared the latest science as well as personal experiences to help inform this important topic.

Grief and Death in Epilepsy: Learning From Loss

05/18/2021

This PAME webinar explored racial, ethnic, economic, and geographic differences in epilepsy-related mortality in the U.S. and globally.  Where can we look to make progress?  The following panelists will shared the latest science as well as personal experiences to help inform this important topic.