Past Webinars

Epilepsy is a serious and common brain disorder that can be life threatening. In fact, people with epilepsy have a three times higher risk of early death than the general population. States have an important opportunity to advance awareness and education through legislation that can help prevent SUDEP (Sudden Unexpected Death in Epilepsy) and other epilepsy-associated deaths. Please join us in this webinar discussion to learn about state level policies that have been prioritized by a range of epilepsy stakeholders and about PAME's new Advocacy Toolkit that seeks to empower advocates across the country interested in protecting people living with epilepsy. In this webinar, we will hear from experts in government affairs and in epilepsy research. We will also hear from one woman who lost her brother to epilepsy and is championing positive change in her state. This webinar is generously supported by UCB, Inc.

• Laura Lubbers, CURE Epilepsy
• Liz Collins, G2G Consulting
• Hannah Whitten, Whitten Newman Foundation

Navigating genetic testing, research opportunities, and support services

After a sudden death due to epilepsy, individuals are often left with many unanswered questions. During this webinar, we’ll discuss the death investigation process and provide information on autopsies and brain banking after a death. We’ll learn about genetic testing and the recommendations from the Sudden Death in the Young Registry. We’ll also share resources about bereavement services. Join PAME and our moderator Alison Kukla for a conversation about what to do after a death due to epilepsy. Our three guest speakers are Edana Perry, a mom who will share her personal story of loss and turning her grief into action, Dr. Daniel Atherton a medical examiner who will share his experience with the death investigation process, and Heather MacLeod, a genetic researcher who will share her expertise on genetic testing and the Sudden Death in the Young Registry. This webinar is generously sponsored by LivaNova.

Today, our best strategy to reduce SUDEP risk is to reduce seizures. Metabolic therapies are some of the earliest documented methods to effectively reduce seizures, but their use fell by the wayside with anti-seizure medications. Are metabolic therapies safe? Are they better than medication? How do metabolic therapies work? Join PAME and our moderator Dr. Kristina Simeone for a conversation about the mysteries and mechanisms surrounding metabolic therapies. Our two guest speakers are Dawn Martenz, a mom who will share her experiences using metabolic therapies for over a decade to treat her daughter with Dravet Syndrome, and Dr. Jeff Buchhalter, a physician-scientist who will share his experiences treating and studying metabolic therapies in the clinic.

Seizures & Sudden Death in Children - New evidence and important directions for research and prevention.     Leading NYU researchers, Laura Gould and Orrin Devinsky, discussed their new research linking seizures, including febrile, to early childhood deaths. This webinar also featured Justin Fell and Katie Czajkowski-Fell as they shared their story of their son Hayden and their experience in research enrollment with NYU's SUDC Registry and Research Collaborative. Pediatric epilepsy specialist, Dr. Elizabeth Donner, moderated the webinar as the panelists describe their study and its implications for future research and clinical care such as post-infancy sleep guidelines.

While Sudden Unexpected Death in Epilepsy (SUDEP) is a global phenomenon, there are wide variations in the knowledge, attitudes and practices of health care providers around the world as it relates to this most common form of epilepsy-related mortality. Watch Dr. Robyn Whitney, Dr. Suvasini Sharma and Tolu Olaniyan present and engage in a lively discussion on what we can learn from these surveys and experiences to better meet the global challenges to SUDEP education and prevention.  

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?

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

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: 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.

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.

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).

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 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.

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.

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?

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.

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.

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.