Partners Against Epilepsy Mortality (PAME)

Registration is now open for the 8th PAME Conference on December 5th at the Sheraton Grand Hotel in Los Angeles, CA. Registration: https://lnkd.in/eefe8zAW Details: https://lnkd.in/eBbYDyuU This year’s keynote speaker is Libby Boyce of The Cameron Boyce Foundation. Plenary sessions will explore ways to enhance early recognition to drive the prevention of epilepsy-related mortality and the state of #SUDEP innovation. Breakout sessions will feature presentations on SUDEP research models, improving risk disclosure & death certification at the state level through legislation, neurodegeneration across the life span, and the role of medical devices in #epilepsy. Hope to see you there!

RESEARCH UPDATE: DEPDC5-related epilepsy carries an increased risk of sudden, unexpected death in epilepsy. This recent research in Neurology evaluated the occurrence and features of ictal central apnea (ICA) in patients with pathogenic sequence variants in DEPDC5. Read more: https://lnkd.in/et9PHH9h #SUDEP

Funding Opportunity from the National Institute of Neurological Disorders and Stroke: Institutional Translational Research Training Program (T32) PAR-24-108 The purpose of the NINDS Institutional Translational Research Training (T32) Program is to equip trainees with the knowledge and skills needed to advance basic research toward clinical application and treatments of neurological disorders and stroke. These programs support students and/or postdocs conducting basic, disease-relevant research in an environment that includes 1) basic scientists and clinicians who are actively engaged in collaborative research projects, 2) neuroscience researchers with expertise in translational processes who are conducting research designed to move basic discoveries toward clinical application and 3) relationships with industry and government regulatory agencies. The initiative will support T32 programs for training predoctoral students, postdoctoral fellows, and/or fellowship-stage clinicians. Learn more: https://lnkd.in/edXEgM_g?

Sharing a short segment on #SUDEP, its risk factors, and the importance of #epilepsyawareness and management. This feature is led by WebMD's Chief Medical Officer, Dr. John Whyte. It features Dr. Stephan Schuele, chief of Epilepsy and Clinical Neurophysiology in the Department of Neurology at Northwestern Medicine, and Tom Stanton, President of The Danny Did Foundation. WATCH: https://lnkd.in/evJdZnqF Thank you for shining a light on SUDEP in this important interview!

Congratulations to 24 promising early career scientists who will receive nearly $1.6 million in research grants and fellowships awarded during this funding cycle from the American Epilepsy Society. AES research dollars support trainees, fellows, and newly independent investigators working across the full spectrum of epilepsy research, from basic science through translational and clinical research for all types of epilepsy, seizures, and related conditions. Learn more about the 2024 awardees and their work: https://lnkd.in/ethyvJJe

New research from Nature Magazine entitled Brain Gray Matter Changes in Children at Risk for Sudden Unexpected Death in Epilepsy finds that "Children with epilepsy, who are at risk for Sudden Unexplained Death, show changes in brain volume that often differ in direction of change from adults at risk for SUDEP." Read more: https://lnkd.in/e7ZtYACa #Epilepsy #SUDEP

Please see this new Centers for Disease Control and Prevention funding opportunity looking at the incidence of #epilepsy in children in the US: Few population-based epilepsy incidence studies among children in the United States exist, and these studies are limited to specific geographic areas with small sample sizes. Studies that used nationwide administrative and claims data to estimate epilepsy incidence among children were conducted more than a decade ago and failed to provide national generalizability due to their limited data sources. This NOFO will contribute to a comprehensive understanding of epilepsy incidence (any type), incident-related risk factors, and incidence disparities among the general U.S. pediatric population or subpopulations. The knowledge obtained from this study will assist health officials in shaping public health policies by allocating resources, planning for healthcare services, and implementing preventive measures. https://lnkd.in/gEGnwse5

From Epilepsy Foundation: Our #SUDEP Program provides support for those grieving any epilepsy-related loss. If you require bereavement support, please reach out at 1-800-332-1000 or [email protected]. Explore our SUDEP bereavement services: https://bit.ly/424tfXh #EpilepsyAwareness

"As the mother of a child with intractable epilepsy who is at risk for sudden death, I am acutely aware that every night I tuck him into bed may be his last." Read more: https://lnkd.in/eMD5xB4u #SUDEP #EpilepsyAwareness

Apply to attend AES 2024 as an AES Fellow! The American Epilepsy Society Fellows Program is the Society’s flagship career development program for early-career researchers and clinicians. The goal of the program is to engage promising epilepsy professionals in AES activities, education, and mentoring and to connect them with AES leaders, members, and each other. Fellows participate in the AES Annual Meeting for intensive exposure to epilepsy science, medicine, career skills and paths, networking, top-notch education, and social events. Application Deadline: Monday, August 5 at 5:00 PM ET Learn more & apply: https://lnkd.in/gFuUnPc9 #Epilepsy #Conference