Epilepsy Youth Advocates Advance Key Epilepsy Policies During Day on Capitol Hill
Epilepsy News From: Thursday, March 27, 2025
More than 60 teens impacted by epilepsy urged the passing of important legislation in front of Congress
WASHINGTON, D.C. March 27, 2025 — The Epilepsy Foundation of America hosted one of its signature advocacy events, the Teens Speak Up! & Public Policy Institute, last week culminating with a day on Capitol Hill. This year's event brought together almost 200 advocates to Washington, D.C. from over 40 states. This included over 60 teens living with or impacted by epilepsy, family members and caregivers, local Epilepsy Foundation staff, healthcare providers, and volunteers. This year, teens had to self-nominate, showing initiative and interest in advocacy, ultimately leading to the largest group of teen participants in the history of the event. These passionate young advocates were reviewed and selected to represent the 456,000 youth living with epilepsy in the U.S. on Capitol Hill. The Foundation is grateful to the Charles L. Shor Foundation for their generous support to expand the program. Participants received legislative training and met with more than 150 congressional offices to share their experiences and advocate on behalf of the entire epilepsy community.
“Teens Speak Up! is a unique event for families impacted by epilepsy,” said Bernice Martin Lee, chief executive officer of the Epilepsy Foundation. “The event is an incredible opportunity for teens living with epilepsy, their siblings, as well as parents and caregivers. It equips everyone in the community with the tools they need to jumpstart their advocacy journeys. When teens share their stories and experiences on Capitol Hill, it shows that the sky is the limit. Their work is both inspirational and impactful.”
On Capitol Hill Day, advocates urged Congress to co-sponsor and pass the National Plan for Epilepsy Act (S. 494/H.R. 1189) and the Seizure Awareness and Preparedness Act (S. 1024/H.R. 2151), 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)’s National Center for Chronic Disease Prevention and Health Promotion, the National Institutes of Health (NIH), and the BRAIN Initiative in Fiscal Year 2026.
“As an Ambassador, I have had the opportunity to participate in this year’s event and in the 2023 program,” said Reena Yalamanchili, a young adult advocate living with epilepsy from Texas. “Over that time, I have learned so much about epilepsy and the significance of advocacy. But even more importantly, I feel empowered by these experiences, and I am excited to continue advocating and raising awareness.”
During the event, the Epilepsy Foundation presented the Tony Coelho Impact Award to U.S. Senators Eric Schmitt (R-MO) and Amy Klobuchar (D-MN) for their significant contributions to the epilepsy community including launching and co-chairing the Senate Epilepsy Caucus, introducing the National Plan for Epilepsy Act, and supporting funding for epilepsy research and programs. 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.
The Foundation also awarded the Sara Stubblefield Advocacy Award to Colleen Quinn and the Epilepsies Action Network (EAN). 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.
Colleen Quinn has been at the helm of passing and advancing many epilepsy-related bills at the state level, but most recently, Colleen worked with U.S. Senator Cory Booker (D-NJ) and U.S. Representative Donald Norcross (D-NJ-01) on introducing the Seizure Awareness and Preparedness Act. In addition to expanding the National Neurological Conditions Surveillance System to the epilepsies and securing funding for a Pediatric-Onset Epilepsies Consortium at the National Institutes of Health, EAN has led efforts to introduce the National Plan for Epilepsy Act in the U.S. Congress.
For more information about the Epilepsy Foundation’s Advocacy efforts visit epilepsy.com/advocacy.
About Epilepsy
Epilepsy is considered by world experts to be the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. Epilepsy is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.
About the Epilepsy Foundation of America
The Epilepsy Foundation is a national nonprofit organization dedicated to improving the lives of people affected by epilepsy through education, advocacy, research, and connection. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding epilepsy research and supporting epilepsy investigators and specialists in their early careers. In partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy and trained more than 600,000 people in seizure recognition and first aid. The Epilepsy Foundation continues to focus on serving the epilepsy community through advocacy, education, direct services, and research for new therapies. To learn more visit epilepsy.com or call 1.800.332.1000; in Spanish at 866.748.8008 or laepilepsia.org. Follow us on Facebook, Instagram, Twitter, LinkedIn, TikTok, and YouTube.
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