Partners Against Epilepsy Mortality (PAME)

BIG NEWS: Yesterday, the House and Senate introduced nonpartisan bills to create a National Plan for Epilepsy! This is an important step towards better understanding and preventing epilepsy-related deaths. Thank you to the tireless advocates, and please stay tuned for more information.

ICYMI: Watch the recording of the International League Against Epilepsy's recent webinar on How to talk about SUDEP Webinar: https://lnkd.in/eacEH36i SUDEP conversations can be challenging, but studies show that patients and families want to know about the risks. A common reason that clinicians do not discuss SUDEP risk is concern for provoking distress, anxiety, and fear. In this webinar, we talk about the importance of discussing SUDEP and give you practical suggestions on how to do so. Providing the facts honestly and openly can strengthen partnerships with patients and family caregivers. #SUDEP #Webinar

GRANT OPPORTUNITIES from CURE Epilepsy: The Taking Flight Award (1.5 years / $125,000) seeks to promote the careers of early-career investigators by allowing them to develop an independent research focus. The CURE Epilepsy Award (2 years / $250,000) reflects continued focus on scientific advances that have the potential to truly transform the lives of those affected by epilepsy. Prevention and disease modification are critical goals. Letters of Intent can be submitted starting Monday, November 25 and are due no later than Tuesday, January 7. Learn More: https://lnkd.in/eXniud8U #Epilepsy #Researchopportunity

We wanted to share an upcoming webinar from the Centers for Disease Control and Prevention entitled?The Medicolegal Death Investigation Interagency Working Group: Insight into Federal Coordination and Examples of Activities that Support Death Investigators? When: November 12, 2024 at 3:00-3:50 pm ET Register: https://lnkd.in/gKM6KDh8 Presenter: Lucas Zarwell, Director, Office of Investigative and Forensic Sciences, National Institute of Justice?

WEBINAR: Epilepsy is a severe and common brain disorder that can be life-threatening. States have a significant opportunity to advance awareness and education through legislation that can help prevent #SUDEP (Sudden Unexpected Death in Epilepsy) and other epilepsy-associated deaths. REGISTER: https://lnkd.in/eK3Kgkgx Please join us to learn about state-level policies prioritized by a range of epilepsy stakeholders and about PAME's new Advocacy Toolkit, which 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 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. Facilitator: Tom Stanton, The Danny Did Foundation Speakers: Laura Lubbers, CURE Epilepsy Liz Collins, G2G Consulting Hannah Whitten, WHITTEN NEWMAN FOUNDATION #epilepsy #webinar

Researchers at the University of Toronto’s Faculty of Applied Science & Engineering have developed a new approach to studying brain wave patterns that may offer vital clues into the mechanisms behind Sudden Unexpected Death in Epilepsy. Read more: https://lnkd.in/gKX57dWs #epilepsyawareness #SUDEP

WEBINAR: How to talk about SUDEP 23 October 2024, 15:00-16:00 ET REGISTER: https://lnkd.in/ePQwgcbR SUDEP conversations can be challenging to initiate, but studies show that patients and families want to know about the risks. A common reason that clinicians do not discuss SUDEP risk is concern for provoking distress, anxiety, and fear. In this webinar, we discuss the importance of talking about SUDEP and present practical suggestions on how to discuss the issue. Providing the facts honestly and openly can strengthen partnerships with patients and family caregivers. Speakers: Edana Perry (USA), Sammy Ashby (UK), and Yasmin Hibbins (Australia) Moderator: Sandra Dewar (USA) Clinician presenter: Lucretia Long (USA) Thank you to International League Against Epilepsy Nursing Section for hosting this session!

Today is SUDEP Action Day. Join PAME and our partners in raising awareness of SUDEP. This year's theme is "Our Risk, Our Rights." This theme emphasizes the community’s right to access vital, lifesaving information, empowering individuals and families by encouraging critical conversations about the risks we face and the rights we have to be informed. The theme also gives bereaved families a platform to get their questions answered and the cause of their loved one’s death acknowledged. #OurRiskOurRights, #SUDEP #SUDEPActionDay2024

ICYMI: The recording of our recent webinar What's metabolism got to do with it? is now available. WATCH: https://lnkd.in/epYbBeyH 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. This webinar is generously sponsored by LivaNova.

SUDEP Action Day on Oct. 16 is a crucial time to raise awareness about Sudden Unexpected Death in Epilepsy (SUDEP). This year we're focusing on your right to be informed and access life-saving information, empowering individuals and families to have crucial conversations. We’re also standing with bereaved families as they seek answers and support. Together, we’re prioritizing safety and understanding risks. Join us and our partners in continuing this important conversation. Learn more: https://lnkd.in/eNZpue53 #SUDEPActionDay2024 #SUDEP