Epilepsy Caucus Co-chairs, U.S. Senators Eric Schmitt (R-MO) and Amy Klobuchar (D-MN), along with U.S. Representatives Jim Costa (D-CA-21) and Greg Murphy, MD (R-NC-03) reintroduced the National Plan for Epilepsy Act (S. 494/H.R. 1189) on February 11, 2025.  The Act supports the development of a comprehensive strategy to prevent, diagnose, treat, and cure epilepsy and improve the well-being of people with epilepsy and their families.

Epilepsy Alliance America joined more than 125 epilepsy organizations across the country in signing a letter of support for the National Plan for Epilepsy Act.

Epilepsy is the fourth most common neurological condition in the United States. The monumental legislation would bring more attention, support, and resources to the nearly 3.4 million Americans living with the epilepsies and other seizure disorders.

“I understand the unique challenges the epilepsy community faces,” said Tony Coelho, former member of Congress (CA), primary sponsor of the Americans with Disabilities Act (ADA), and person living with epilepsy and having seizures for 64 years. “While we have made a lot of progress over the years, there is still work to be done. The National Plan for Epilepsy will propel us forward by fostering understanding among policymakers and driving innovation.”

If passed by Congress and signed into law by the President, this bill will direct the federal government to develop a National Plan for Epilepsy. This plan will enable the federal coordination necessary to ensure better outcomes for people with epilepsy and prioritize the development of more effective epilepsy treatments.

In addition to various assessments and reports conducted by the Secretary of the U.S. Department of Health and Human Services, the National Plan for Epilepsy Act will create an Advisory Council of relevant federal government and community representatives to advise the Secretary on epilepsy-related issues. It will also provide a report on recommended priority actions. The Advisory Council will focus on areas including improving health outcomes and quality of life; fostering research and innovation for more treatments and cures; strengthening data and information systems; increasing public awareness about epilepsy and reducing stigma; reducing Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy-related mortalities; and increasing access to specialized epilepsy care.

Congressional Briefing:  February 11, 2025

Senator Eric Schmitt and other congressional leaders held an informational briefing on Capitol Hill on February 11, 2025, to discuss the importance of the National Plan for Epilepsy. Featured on the panel were: Dr. Dan Lowenstein, Epilepsies Action Network, National Advisory Board and Professor of Neurology, University of California, San Francisco; Captain Jack Somers, Lived Experience Veteran Advisor, VA Epilepsy Centers of Excellence & Consultant, CURE Epilepsy; and Gabi Conecker, MPH Executive Director and Co-Founder of Decoding Developmental Epilepsies & Parent Advocate.

Epilepsy Alliance America representatives Lisa Gallipoli, COO, and Sarah Dau, Board Member and parent and daughter of people with epilepsy, were in attendance in the packed room.

For more information:
Rep. Jim Costa Introduces National Plan for Epilepsy | Congressman Jim Costa
Rep. Jim Coast Introduces the National Epilepsy Plan Act:  ABC 30 Action News Story

TAKE ACTION:  Contact your Representative and Senators today and ask them to support the National Plan for Epilepsy

Joyce Bender has been appointed to represent Epilepsy Alliance America on the National Plan for Epilepsy Committee (NPEC), a multi-organizational effort that seeks to unite the epilepsy community to support development of a U.S. National Plan for Epilepsy (Plan). NPEC is comprised of representatives from nine epilepsy organizations: the American Epilepsy Society, CURE Epilepsy, Epilepsies Action Network, Epilepsy Alliance America, Epilepsy Foundation of America, Epilepsy Leadership Council, International League Against Epilepsy-North America, National Association of Epilepsy Centers and the Rare Epilepsy Network.

NPEC is facilitating a process for broad input and support from the entire epilepsy community – people with epilepsy, their families, caregivers, clinicians, researchers, patient advocacy groups, and others – to contribute their expertise to create consensus policy and programmatic recommendations and advance the Plan.  Learn more and get involved here: https://www.epilepsy-national-plan.org/.