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Working together to understand & prevent epilepsy mortality

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Working together to understand & prevent epilepsy mortality

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Working together to understand & prevent epilepsy mortality

Our Mission

PAME’s mission is to convene, educate and inspire all stakeholders – from the bereaved to those living with epilepsy, to health care professionals, advocates, clinical and basic scientists, and death investigators – to promote understanding and drive prevention of epilepsy-related mortality.

Upcoming Events & Webinars



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.    This webinar will discuss what we know about SUDEP, specifically in the rare epilepsy community, as well as what parents and caregivers of children with rare epilepsies should know about SUDEP prevention and ways to mitigate risk. Presenters will share ideas on how to discuss SUDEP with doctors, from both the perspective of a physician and a parent of a child diagnosed with a rare genetic epilepsy who has educated themselves about SUDEP and taken steps to reduce the risk of SUDEP for their child. Attendees will have the opportunity to ask questions to all presenters. The webinar will also include a discussion about the latest advancements in basic and clinical epilepsy research focused on SUDEP risk and prevention.   The webinar is intended for people living with epilepsy, their family members and caregivers, and anyone seeking to learn more about mental health and epilepsy.   There will be a live Q&A at the end of the presentation. You can submit questions in advance here. CURE Epilepsy is conducting this webinar in partnership with our friends at PAME and Wishes for Elliott.

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. Speakers will include pediatrician Dr. Talia Shear from Lurie Children’s Hospital; Tom Stanton from the Danny Did Foundation; and Pedro Irazoqui, Head of the Department of Electrical and Computer Engineering at Johns Hopkins University. Welcome remarks will be presented by Jeanne Donalty, a longtime advocate, and a mother who lost her son Christopher to SUDEP.

PAME Conference 2022

12/01/2022

Partners Against Mortality in Epilepsy (PAME) is a powerful, growing collaboration among health care providers, clinical researchers, basic scientists, public health officials, patient advocates, caregivers, bereaved families, and people living with epilepsy. This range of stakeholders come together with a common goal of improving our understanding of and working to prevent epilepsy-related forms of mortality, including suicide, accidents, and status epilepticus, and with a strong focus on Sudden Unexpected Death in Epilepsy (SUDEP).

View Events & Webinars


Mortality Issues

People with epilepsy are 3 times more likely to die prematurely than people without epilepsy. Many of these deaths could be prevented. Learn more about the leading causes.

Resources

PAME’s resource hub seeks to centralize updated information and link to partner organizations for specific content. Search here for non-profit partner resources, practice guidelines, educational materials, bereavement resources, publications, funding opportunities and more.

Recent News

Explore recent publications, news and updates.

Epilepsy Mortality: The Unseen and Unknown

01/18/2022 | Neurology | Orrin Devinsky

In this issue of Neurology®, Klovegard et al.1 examine epilepsy mortality using a wide-angle lens, looking beyond sudden unexpected death in epilepsy (SUDEP) to other direct and indirect causes of epilepsy-related deaths. They found that most deaths in children and adults <50 years old were directly or indirectly related to epilepsy. Thus, epilepsy may be the leading...

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