Epilepsy Community Advocates to Advance Key Policies During Capitol Hill Day

More than 120 advocates impacted by epilepsy urged Congress to pass important legislation and funding, including the National Plan for Epilepsy Act

WASHINGTON, May 11, 2026 /PRNewswire/ -- The Epilepsy Foundation of America last week hosted one of its signature advocacy events, the Public Policy Institute, culminating with a day on Capitol Hill. More than 120 advocates from over 35 states—including people living with epilepsy, family members and caregivers, local Epilepsy Foundation staff, partner organizations, and health care providers—held more than 140 meetings with congressional offices to advance key epilepsy policies in the 119^th Congress.

"The epilepsy community showed up in force to make sure lawmakers understand what's at stake for the nearly 3.4 million Americans living with active epilepsy," 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."

On Capitol Hill Day, advocates urged Congress to co-sponsor and pass the National Plan for Epilepsy Act (S. 494/H.R. 1189), as well as to join the Congressional Epilepsy Caucus. Additionally, advocates asked members of Congress to support funding for 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), the BRAIN Initiative, and several epilepsy-related programs under the Congressionally Directed Medical Research Program (CDMRP) in Fiscal Year 2027. 

During the event, the Epilepsy Foundation presented the Tony Coelho Impact Award to U.S. Senator Cory Booker (D-NJ) and U.S. Representative Brian Fitzpatrick (R-PA-01) for their significant contributions to the epilepsy community. The award is named after former U.S. Representative Tony Coelho (CA), who was the original author of the Americans with Disabilities Act (ADA) and is a former member of the Foundation's National Board of Directors.

"I am deeply honored to receive the Tony Coelho Impact Award, named for a true champion of the disability community. Every individual living with epilepsy deserves access to quality care and meaningful resources, yet too many families still face barriers in accessing the support they deserve. We have a responsibility to do better through stronger research, broader access to treatment, and policies that support dignity and independence. I am proud to stand with this community as we continue the important work ahead toward achieving these goals," said Senator Cory Booker (D-NJ).

The Foundation also awarded the Sara Stubblefield Advocacy Award to the Brossard family from Ohio. This award is given annually to honor the life and legacy of advocacy work of a former Epilepsy Foundation of Greater Southern Illinois employee. The advocacy award recognizes individuals or entities advocating and making a difference in the lives of millions of Americans living with epilepsy.

After the loss of their beloved daughter, Brenna, Lou and Joni turned their grief into action. They have worked on SUDEP awareness and prevention at the local, state, and national levels. Currently, the Brossard family is diligently advocating to get "Brenna's Law" passed in Ohio in honor of their daughter, which promotes education about SUDEP and ensures patients and families are better informed and supported than their own family had been prior to their loss.

For more information about the Epilepsy Foundation's Advocacy efforts visit https://www.epilepsy.com/advocacy.

About Epilepsy
Epilepsy is the most common chronic brain disorder in the world, affecting people of all ages, races, and backgrounds. According to the U.S. Centers for Disease Control and Prevention (CDC), nearly 3.4 million Americans live with active epilepsy. The condition is defined by a tendency to experience seizures—sudden, abnormal bursts of electrical activity in the brain that can disrupt behavior, awareness, and bodily control. Beyond seizures, epilepsy can also lead to challenges such as fatigue, memory difficulties, mood changes, anxiety, and trouble concentrating, all of which can significantly impact daily life. Visit epilepsy.com to learn more.

About the Epilepsy Foundation of America
The Epilepsy Foundation America is a national nonprofit organization dedicated to improving the lives of people affected by epilepsy through education, advocacy, research, and connection. For more than 50 years, the Foundation has led efforts to raise awareness, reduce stigma, and advocate for policies that make a meaningful difference for individuals living with epilepsy. We also fund cutting-edge research and support early-career investigators working to discover new treatments and therapies. Through our nationwide network of local offices and community partners, the Foundation expands access to care, provides seizure recognition and first aid training, and delivers direct services to those in need. To learn more visit epilepsy.com or call 1.800.332.1000; in Spanish laepilepsia.org or call 866.748.8008.

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SOURCE Epilepsy Foundation