Epilepsy Advocates Advance Key Policies During Day on Capitol Hill

WASHINGTON, D.C. April 4, 2024 —The Epilepsy Foundation recently hosted its annual signature advocacy event, the Public Policy Institute (PPI), culminating with a Capitol Hill Day. This year's event focused on bringing to Washington, D.C, the Foundation’s Epilepsy Advocacy Champions, a grass-tops volunteer program that the Foundation launched in 2020. These advocacy volunteers include people living with epilepsy, caregivers, healthcare providers, and researchers. The event brought together approximately 75 advocates and local Epilepsy Foundation staff representing more than 30 states. Participants received legislative training and met with more than 105 congressional offices to share their experiences and advocate on behalf of the epilepsy community.

“The Public Policy Institute is a critical educational and connection opportunity,” said Bernice Martin Lee, chief executive officer, Epilepsy Foundation. “It is inspiring to highlight diverse voices from the epilepsy community so that they are not only heard by each other but also by policymakers. By sharing their stories, Epilepsy Advocacy Champions and all advocates advance needed change for the entire community.”

On Capitol Hill Day, advocates urged 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, a SUDEP-related registry, and the VA Epilepsy Centers of Excellence. Advocates also urged their members to join the Congressional Epilepsy Caucus. Representatives Greg Murphy, M.D. (NC-3) and Jim Costa (CA-21) launched the House caucus in 2023 and membership has grown to more than 35 bipartisan members. This year in conjunction with PPI, Senators Amy Klobuchar (MD) and Eric Schmitt (MO) launched a complementary caucus in the Senate. Finally, advocates requested that disability provisions be included in the Federal Aviation Administration (FAA) reauthorization bill to make air travel more accessible. Advocates will continue their outreach to keep results happening throughout the year.

"When I was diagnosed, I needed someone to be my voice because I was too afraid to speak for myself. I became an Epilepsy Foundation Advocacy Champion to be that voice for others,” said Elizabeth Graham from Kentucky. “We are not here because of epilepsy. We are here in spite of it. Whether you advocate as someone who has epilepsy or for someone you love, we have a mission in common, and that is choosing to speak loudly and take up space in the places where change is made, even — and especially — when that is met with resistance."

During the event, the Epilepsy Foundation honored the late Alexandra “Sandy” Finucane with the Disability Rights Legacy Award for her devotion and leadership in fighting for the civil rights of people with epilepsy. The Foundation awarded the Tony Coelho Impact Award to two members of Congress for their significant contributions to the epilepsy community: Representatives Brad Wenstrup, D.P.M. (R-OH-02) for co-leading the Safe Step Act and Steny Hoyer (D-MD-05) for many contributions including support of the CDC Epilepsy Program and increasing research funding. 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 past member of the Epilepsy Foundation’s national Board of Directors.

The Foundation also awarded the Sara Stubblefield Advocacy Award to the Epilepsy Foundation of Minnesota for its instrumental role in passing the nation’s first-ever state law to provide Medicaid coverage of FDA-approved seizure detection devices. This award is given annually at the event in honor of a former Epilepsy Foundation of Greater Southern Illinois employee.  

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

About Epilepsy

According to the World Health Organization, epilepsy is 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

With a network of partners throughout the United States, the Epilepsy Foundation is leading the fight to overcome the challenges of living with epilepsy. The Foundation connects people to treatment, support, and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. 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, expanded its digital reach and online resources in homes across the country, 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.