Epilepsy Advocates Push Congress for National Plan, Critical Funding

WASHINGTON, DC – May 11, 2026 – The halls of Congress echoed with personal stories and urgent policy demands last week as more than 120 advocates from over 35 states convened for the Epilepsy Foundation of America's Capitol Hill Day. In a series of over 140 meetings, people living with epilepsy, their families, caregivers, and healthcare providers pressed lawmakers to address the needs of the nearly 3.4 million Americans affected by the chronic brain disorder.

The advocates' primary mission was to build support for a slate of crucial legislative and funding priorities, chief among them the passage of the National Plan for Epilepsy Act. This concerted effort underscores a growing demand for a coordinated federal strategy to improve research, care, and quality of life for a community that has long navigated a fragmented system.

"The epilepsy community showed up in force to make sure lawmakers understand what's at stake," said Laura Weidner, Chief Advocacy and Government Relations Officer at the Epilepsy Foundation of America. "We're asking Congress to act with urgency to advance the National Plan for Epilepsy and continue to invest in research and public health. These are necessary to reduce stigma, improve quality of life, and finally make people with epilepsy a priority in our country."

A Legislative Push for a National Strategy

At the heart of the advocacy day was the push for the National Plan for Epilepsy Act (S. 494/H.R. 1189). Reintroduced in February 2025 by a bipartisan group of lawmakers, the bill aims to create a comprehensive federal strategy to prevent, diagnose, and treat epilepsy. If passed, it would direct the Department of Health and Human Services (HHS) to develop and regularly update a coordinated plan across all federal agencies.

The legislation also mandates the creation of an Advisory Council on Epilepsy, composed of government representatives, patients, caregivers, and researchers. This council would advise the HHS Secretary on improving health outcomes, fostering innovation, strengthening data collection, and increasing access to specialized care. By requiring biennial reports to Congress, the act seeks to establish a framework for accountability and continuous improvement in the nation's response to epilepsy.

Driving this legislative effort are the bipartisan Congressional Epilepsy Caucuses in both the House and Senate, whose members have been instrumental in raising awareness. Advocates urged members of Congress not only to co-sponsor the bill but also to join the caucus, expanding the coalition of lawmakers dedicated to the cause.

The High Stakes of Research Funding

Beyond specific legislation, the advocates' message carried a stark warning about the state of research funding. For Fiscal Year 2027, the group requested robust support for several key programs, including the epilepsy program at the Centers for Disease Control and Prevention (CDC), the VA Epilepsy Centers of Excellence (VA ECoE), the National Institutes of Health (NIH), and the BRAIN Initiative.

A particularly urgent concern is the funding for the Epilepsy Research Program (ERP) within the Congressionally Directed Medical Research Program (CDMRP). After Congress cut the CDMRP budget by 57% for FY2025, funding for all epilepsy-related programs was suspended. The FY2026 budget failed to restore these funds, creating what many researchers fear is a critical gap in the development of new treatments, particularly for conditions like post-traumatic epilepsy (PTE).

While the pending FY2026 spending bill includes a modest increase for the NIH to $47.2 billion, advocates argue that more targeted and substantial investments are needed. For example, a coalition of scientific organizations is urging Congress to restore funding for the BRAIN Initiative to $680 million, a significant increase from its current $429 million, to accelerate the translation of neuroscience into clinical technologies that could benefit people with epilepsy.

Personal Stories Fueling Policy Change

Behind every policy ask and funding request were the powerful human stories of those directly impacted by epilepsy. The Epilepsy Foundation honored several individuals whose personal journeys have transformed them into tireless advocates.

U.S. Senator Cory Booker (D-NJ) and U.S. Representative Brian Fitzpatrick (R-PA-01) received the Tony Coelho Impact Award for their contributions to the epilepsy community. The award is named for the former congressman who authored the Americans with Disabilities Act (ADA).

"Every individual living with epilepsy deserves access to quality care and meaningful resources, yet too many families still face barriers," said Senator Booker upon receiving the award. "We have a responsibility to do better through stronger research, broader access to treatment, and policies that support dignity and independence."

The Sara Stubblefield Advocacy Award was presented to the Brossard family from Ohio, whose story exemplifies the grassroots passion driving the movement. After losing their daughter, Brenna, to Sudden Unexpected Death in Epilepsy (SUDEP) in 2022, Lou and Joni Brossard channeled their grief into a campaign for awareness and prevention. Their family had not been informed about the risk of SUDEP during the nearly 10 years Brenna lived with epilepsy.

Their activism has led them to champion "Brenna's Law" (House Bill 229) in Ohio. The bill, which passed the Ohio House of Representatives with a unanimous 91-0 vote, would require healthcare practitioners to provide patients with information about SUDEP risks. The Brossards' work at the local, state, and national levels provides a poignant example of how personal tragedy can fuel systemic change, ensuring other families are better informed and supported.