Epilepsy Advocates Unite on Capitol Hill for Critical Legislation and Awareness

Advocating for Change: Epilepsy Community's Capitol Hill Day

Last week, the Epilepsy Foundation of America hosted its Public Policy Institute, culminating with a powerful day on Capitol Hill, where over 120 advocates impacted by epilepsy gathered. This passionate group, comprising individuals living with epilepsy, caregivers, and health care professionals from more than 35 states, engaged in more than 140 meetings with congressional offices. Their collective aim: to elevate key epilepsy policies in the 119th Congress.

Laura Weidner, the Chief Advocacy and Government Relations Officer at the Epilepsy Foundation, stated, "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." The urgency of their message revolved around the advancement of the National Plan for Epilepsy and sustained investments in research and public health initiatives, emphasizing that these steps are essential to enhance the quality of life and reduce stigma for individuals living with epilepsy.

Legislative Focus on Epilepsy

On this significant day, advocates specifically urged Congress to co-sponsor and pass the National Plan for Epilepsy Act (S. 494/H.R. 1189) and to join the Congressional Epilepsy Caucus. In addition, they highlighted the need for consistent funding for several vital initiatives, 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. These organizations play crucial roles in advancing epilepsy research and improving patient care. Advocates also called for support for various epilepsy-related programs under the Congressionally Directed Medical Research Program (CDMRP) for Fiscal Year 2027.

The event wasn’t just about meetings; it was also about recognition. The Epilepsy Foundation presented the prestigious Tony Coelho Impact Award to two honored lawmakers, U.S. Senator Cory Booker (D-NJ) and U.S. Representative Brian Fitzpatrick (R-PA-01). Named after the former U.S. Representative who authored the Americans with Disabilities Act (ADA), this award acknowledges significant contributions to the epilepsy community. Senator Booker expressed his dedication to ensuring that every individual living with epilepsy has access to quality care, stating, "...We have a responsibility to do better through stronger research, broader access to treatment, and policies that support dignity and independence."

Honoring Local Advocacy

Further exemplifying the spirit of advocacy, the Foundation awarded the Sara Stubblefield Advocacy Award to the Brossard family from Ohio. This annual award, named after a former Epilepsy Foundation employee, honors those making significant differences for Americans living with epilepsy. The Brossard family, following the tragic loss of their daughter Brenna, has turned their heartbreak into a force for change. They are active advocates for SUDEP (Sudden Unexpected Death in Epilepsy) awareness and prevention at multiple levels, pushing for the passage of "Brenna's Law" in Ohio, which seeks to enhance education and support regarding SUDEP.

What Lies Ahead for the Epilepsy Community

The collective voices of these advocates communicate a clear message: essential change is necessary for the epilepsy community. With nearly 3.4 million Americans living with the condition, there is an urgent need for the legislation that addresses the challenges they face. Efforts like the National Plan for Epilepsy are vital to secure the future of care and research, ensuring that individuals with epilepsy are prioritized.

For further information about the Epilepsy Foundation's advocacy work, explore their website at epilepsy.com/advocacy.

Bringing public attention to epilepsy not only aims to improve the lives of individuals affected by the disorder but highlights the ongoing challenges they face. As advocates continue to rally for essential policies, the goal remains clear: to create an environment where individuals living with epilepsy can thrive without stigma or barriers to care.