Our 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.
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.
Our Structure
Our 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. Please reach out to PAME@aesnet.org if you’re interested in participating in current or future efforts.
Our Priorities
As PAME expands its efforts to nurture a better coordinated and multisectoral response to epilepsy mortality, it will focus on the following 4 priorities in 2023-2024:
1. BUILD an organizing and governance structure to accomplish PAME’s mission. 2. CONVENE stakeholders to share knowledge, forge cross-sector learning and drive action. 3. EDUCATE through enhanced communications efforts, improved access to information and development of new content. 4. INSPIRE and facilitate innovation and progress by leveraging the unique attributes of partnering organization and individuals.
