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 Gardiner Lapham 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.

Governance Committee

The Governance Committee is representative of its founding partners and constituencies. This group meets regularly to coordinate efforts and ensure progress against PAME’s strategic priorities. It is responsible for overall direction, planning, partnership engagement, committee oversight and fiscal health.

Jeff Buchhalter, MD, PhD, FAAN, FAES

Epilepsy Learning Healthcare System, Pediatric Epilepsy Learning Healthcare System

Beth Dean, MPA, MBA


CURE Epilepsy

Elizabeth Donner, MD, MSc, FRCPC

Director, Comprehensive Epilepsy Program, The Hospital for Sick Children Michael Bahen Chair in Epilepsy Research Professor, Paediatrics

University of Toronto

Anne Gramiak, MPH, MSLOC

Senior Manager, Epilepsy Leadership Council and Partnerships

American Epilepsy Society

Alison Kukla, MPH

Senior Manager, Programs & Partnerships

Epilepsy Foundation

Gardiner Lapham, RN, MPH


BAND Foundation

Eileen Murray, MM, CAE

Executive Director

American Epilepsy Association

George Richerson, MD, PhD

Chair, Department of Neurology

Carver College of Medicine, University of Iowa

Tom Stanton, MPS


Danny Did Foundation

Hannah Whitten


Whitten-Newman Foundation

Conference Planning Committee

The Conference Planning Committee is responsible for planning and organizing all aspects of the PAME Conference, with AES providing substantial logical and administrative support. This group is representative of the lay and professional audiences and actively works to develop engaging meeting content; identify new speakers and expand PAME’s reach.

SUDEP Research & Prevention Committee

The SUDEP Research and Prevention Committee is charged with overseeing the strategic plan developed by the SUDEP Coalition Summit in 2020. The goal of the Summit was to identify SUDEP research and prevention priorities in the areas of basic science, clinical action, behavior change and awareness, and public health/epidemiology that should be immediately addressed to make significant progress against SUDEP in the next 5 years. This year long process, facilitated by the Epilepsy Foundation, was a community-wide effort. This committee will help to promote the implementation of the recommendations.