Advocacy: Epilepsy Funding

Many federal departments and agencies support epilepsy research and programs that raise awareness about epilepsy or support people living with epilepsy and their families. Some of these are outlined below. Congress has started working on the FY 2025 spending bills, so the Foundation, advocates, and partner organizations will be urging robust funding for epilepsy research and programs throughout the entire process.

CDC Epilepsy Program

The CDC Epilepsy program is the only public health program specifically related to epilepsy with a national scope and community programs. This funding supports seizure recognition and seizure first aid training for key community personnel like school personnel; training for primary care and behavioral health providers to improve health outcomes for people with epilepsy, particularly in rural and underserved communities; establishing and expanding epilepsy surveillance and data collection; and addressing health disparities by providing mini-grants to community organizations to increase awareness and connect people with epilepsy to services, as well as partnerships with medical associations representing and serving racial and ethnic minority groups. In FY 2024, the CDC Epilepsy Program was funded at $11.5 million. In FY 2025, the Foundation is urging Congress to provide $12.5 million.

Sudden Unexpected Infant Death (SUID) and Sudden Death in the Young (SDY) Case Registry 

A joint collaboration of the CDC and NIH, the SUID and SDY Case Registry increases the understanding of the prevalence, causes, and risk factors for various infant, childhood, and young adult deaths up to age 20, including from SUDEP. More investment will enable more states to participate, which will yield more data and inform strategies to prevent SUDEP and other deaths. The SUID & SDY Case Registry is largely funded through the Safe Motherhood & Infant Health which in FY 2024, was funded at $108 million. In FY 2025, the Foundation is urging Congress to provide $164 million.

VA Epilepsy Centers of Excellence (ECoE)

Veterans can acquire epilepsy and seizure disorders through a variety of means but oftentimes, it is Traumatic Brain Injury that can cause seizures to start happening. Recognizing the need, Congress passed a law in 2008 directing the Secretary of Veterans Affairs (VA) to establish the ECoEs within the VA. There are now 4 regions with 19 VA hospitals that provide specialty care and state-of-the-art diagnostic and therapeutic services to our nation’s veterans with epilepsy and seizure disorders. In FY 2023, the VA ECoEs treated 86,414 unique veterans with epilepsy or seizures. In FY 2024, the VA ECoEs received $25 million. In FY 2025, the Foundation is urging Congress to provide $26.8 million.

National Institutes of Health (NIH)

Within the NIH, several institutes fund epilepsy-related research which has helped better understand, diagnose and treat epilepsy—perhaps most notably, the National Institute of Neurological Disorders and Stroke (NINDS). In FY 2022, the NIH funded about $226 million in epilepsy research. Critical NINDS research efforts include the Epilepsy Therapy Screening Program which works to facilitate the discovery of new antiseizure drugs and has contributed to the development of nearly a dozen approved medications. NINDS’s Centers Without Walls (CWoW) for Collaborative Research in the Epilepsies are multicenter, multidisciplinary groups that address research challenges to advance prevention, diagnosis, and/or treatment of the epilepsies and related co-occurring conditions.

In FY 2024, Congress provided $47.081 billion for the NIH—which was actually a more than $378 million cut from the previous year. The Foundation is very concerned about the impact of these cuts on epilepsy research. In FY 2025, the Foundation urges Congress to provide at least $51.3 billion for the NIH including robust funding for the NINDS. The Foundation also supports ARPA-H and believes that for ARPA-H to be maximally successful, any funding for ARPA-H should supplement, not supplant the essential foundational investment in the NIH.

BRAIN Initiative

The BRAIN Initiative seeks to accelerate the development of innovative neurotechnologies and produce a revolutionary new dynamic picture of the brain that shows how individual cells and complex neural circuits interact in both time and space. Several projects relevant to epilepsy are funded through the BRAIN Initiative that aim to better understand, measure, and monitor how the brain generates neural activity and are working to develop new technologies and devices to measure brain activity, predict seizure onset, and deliver therapeutic stimulation to limit seizure activity. In FY 2025, the Foundation urges Congress to provide at least $740 million.