PAME Collaborative
Partners Against Mortality in Epilepsy (PAME)
The Danny Did Foundation is a founding member of the PAME initiative, 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).
PAME’s Mission
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.
The PAME Story
PAME began in 2012 as a multi-stakeholder conference focused on raising awareness and understanding of all forms of preventable epilepsy-related mortality, including; suicide, accidents, status epilepticus, and Sudden Unexpected Death in Epilepsy (SUDEP). These meetings are unique in that they convene health care providers, basic and clinical researchers, public health officials, advocates, death investigators, people living with epilepsy, caregivers, and bereaved families around a shared agenda. As a result of coordinating five successful meetings, PAME has grown a strong and diverse community that is eager to expand its influence. In 2021, PAME decided to amplify its reach by providing ongoing educational opportunities and promoting a better coordinated response that leverages the strengths of partners to address gaps in the field.
PAME Webinars
All stakeholders are welcome to attend free PAME webinars. Most webinars are geared towards PAME’s multiple audiences. While some content might be technical, PAME strives to educate all who are interested. Visit www.pameonline.org to view the schedule of webinars.
Next PAME Meeting
The 2024 PAME meeting will be in Los Angeles, CA. A special session for bereaved families and advocates is scheduled for December 4th. On December 5th, PAME will host a full day meeting that is open to parents and caretakers, adult patients, bereaved family members, advocates, medical professionals, public health agencies and industry leaders. This PAME event will be held in conjunction with the American Epilepsy Society Meeting in Los Angeles. Learn more here. Danny Did has funding available for family members who are interested to attend but face financial barriers. (Note that this meeting is generally not suitable for children.) Click the button below to learn more.
PAME Memory Wall
Have you lost a loved one to SUDEP or another epilepsy-related cause? Consider submitting their picture and a short memory for the PAME Memory Wall that will be displayed at the PAME conference in December. The shared pictures and memories will serve as a collective remembrance and a visual way to call for increased urgency in our work. Submit a picture and a memory here. Please email any questions to [email protected].
PAME Conference Executive Committee
Elizabeth J. Donner, MD, MSc, FRCPC
PAME Conference Co-Chair
Assoc Professor, Univ of Toronto Faculty of Medicine
Pediatric Neurologist, Hospital for Sick Children
George B. Richerson, MD, PhD
PAME Conference Co-Chair
Head, Department of Neurology, Carver College of Medicine, University of Iowa
Jeffrey Buchhalter MD, PhD, FAAN, FAES
Epilepsy Learning Healthcare System
Pediatric Epilepsy Learning Healthcare System
Gardiner Lapham, RN, MPH
PAME, Executive Director
Family advocate İ BAND Foundation Trustee
Tom Stanton
PAME Conference Co-Chair
President, Danny Did Epilepsy Foundation
The PAME Structure
PAME exists as a collaborative initiative housed within the American Epilepsy Society (AES). PAME has its own governance structure and AES generously provides pro-bono fiscal and administrative support as well as generous in-kind assistance around program planning and management. PAME maintains a committed and transparent organizing and committee structure that builds on its strong history as a volunteer-led effort.
Partners
The PAME effort is convened by the American Epilepsy Society. In addition to AES, major contributing organizations include the Epilepsy Foundation of America and CURE: Citizens United for Research in Epilepsy and the Danny Did Foundation. Please reach out to Gardiner Lapham at [email protected] if you’re interested in participating in current or future efforts.
PAME Founding Partners
