Epilepsy Community Unites to Oppose Cuts to Crucial Federal Epilepsy Programs

/EIN News/ -- BOWIE, Md., April 14, 2025 (GLOBE NEWSWIRE) -- The 118 undersigned organizations – representing people living with epilepsy; caregivers and loved ones; physicians, care providers, and epilepsy centers; epilepsy researchers; and others – are united in opposition to recent actions by the Administration and Congress to cut vital federal epilepsy programs. As the fourth most common neurological condition in the world and with nearly 3.4 million Americans living with active epilepsy, we must be doing more – not less – to understand and treat epilepsy, develop cures, improve the quality of life for people with epilepsy, and increase public awareness. We urge policymakers to reverse these cuts and ensure that fundamental epilepsy public health and research programs are maintained:

• Centers for Disease Control and Prevention (CDC)’s Epilepsy Program: At the beginning of April, Reductions in Force (RIF) notices were issued to staff within the CDC’s National Center for Chronic Disease Prevention and Health Promotion Epilepsy Program. The CDC Epilepsy Program is the only public health program related explicitly to epilepsy with a national scope and community programs that examine, test, and share strategies to improve the lives of people with epilepsy and their loved ones. This critical program supports seizure recognition and first aid training, including for school personnel; research to better understand the burden and risk factors of epilepsy; self-management programs that improve the health and well-being of people with epilepsy; and Project ECHO so that epilepsy specialists can help primary care doctors in rural communities.

• Congressionally Directed Medical Research Programs (CDMRP): In its final FY25 funding bill, Congress cut appropriations for the Congressionally Directed Medical Research Program (CDMRP) by 57%. This has completely eliminated specific funding for research related to Tuberous Sclerosis Complex (TSC), post-traumatic epilepsy, and traumatic brain injury (TBI) and psychological health. The elimination of this funding will have harmful impacts and set back innovation. TBI is a leading and significant form of injury in service people, especially those in combat and training environments, and it can lead to post-traumatic epilepsy for 50% of those with severe TBI. For many years, these research programs have funded cutting-edge research to better understand and address these neurologic conditions that can affect Service Members, Veterans, and their families. These cuts must be restored to continue progress in epilepsy research.

• National Institutes of Health (NIH) and National Institute of Neurological Disorders and Stroke (NINDS): Within NIH, several institutes fund epilepsy-related research which has helped better understand, diagnose, and treat epilepsy—most notably, the National Institute of Neurological Disorders and Stroke (NINDS). In the past several weeks, nearly 20% of the NINDS staff have been impacted by RIFs, including people dedicated to epilepsy. Beyond a loss of expertise, we also understand that there will be significant cuts to both funding opportunities and contracts. We are extremely concerned about the impact of these cuts on current and future epilepsy research activities and know they are impeding our shared goal of curing epilepsy.

• Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC): The ACHDNC was also terminated in early April. For more than 20 years, this committee has governed the Recommended Uniform Screening Panel (RUSP), which helps to ensure that newborns have access to screening, diagnosis, and intervention for serious medical conditions. Some conditions on the RUSP list can cause seizures and there are many other rare disorders that cause seizures and epilepsy in infants and children that could be added. We are extremely concerned about the impact the dissolution of the ACHDNC will have on infants, children, and their caregivers in the rare epilepsy community. The dissolution of this committee completely terminates any possibility of enhancement, expansion, and improvement of the US's ability to reduce preventable suffering and deaths of infants. We urge that it be reinstated as soon as possible.
  

These actions will halt progress in preventing, diagnosing, treating, curing, and managing epilepsy. These changes are happening at a time when many other significant threats are looming for people with epilepsy and their families, including possible cuts to Medicaid and the possible dismantling of the U.S. Department of Education. About 40% of people with epilepsy rely on Medicaid for access to healthcare and long-term services and supports. Meanwhile, the U.S. Department of Education is vital to ensuring that the rights of students with disabilities are protected and enforced.  

Epilepsy looks different for each person. There are many types of seizures and syndromes, and epilepsy affects people throughout their lifespan with varied causes and associated conditions. Most importantly, delayed recognition and inadequate treatment increases a person’s risk of seizures, brain damage, disability, and death. Epilepsy and/or seizures impose an annual economic healthcare burden of $54 billion in the U.S. This is why epilepsy research and programs are so critical to the public health and economic health of our nation.

The epilepsy community is devastated by these cuts, and we need action now. We call on policymakers to restore funding and staffing for these vital programs. Please contact Laura Weidner, Chief Advocacy and Government Relations Officer for the Epilepsy Foundation at lweidner@efa.org or Johanna Gray, Deputy Director of the National Association of Epilepsy Centers at jgray@artemispolicygroup.com with any questions.

National and International Organizations

AHC Foundation
American Epilepsy Society
Angelman Syndrome Foundation
Angels of Epilepsy, Inc.
Autism Faith Network
CACNA1A Foundation
Child Neurology Foundation
Coalition to Cure CHD2
COMBINEDBrain Inc.
CSNK2B Foundation
CURE Epilepsy
Cure KCNH1 Foundation
CureSHANK
Danny Did Foundation
Developmental and Epileptic Encephalopathies Project (DEE-P Connections)
DLG4 SHINE Foundation
Doose Syndrome Epilepsy Alliance
Dravet Syndrome Foundation
Dup15q Alliance
Epilepsies Action Network (EAN)
Epilepsy Alliance America
Epilepsy Foundation of America
Epilepsy Information Service, Wake Forest School of Medicine
Epilepsy Wellness Advocates
FamilieSCN2A Foundation
Foundation for Angelman Syndrome Therapeutics
GABA-A Alliance
GNB1 Advocacy Group, Inc.
GRIN2B Foundation
Hidden Truths Project
Hope for HIE
Hope for ULD
International Foundation for CDKL5 Research
International League Against Epilepsy - North America
International SCN8A Alliance
Joanna Sophia Foundation
KCNQ2 Cure Alliance
KPTN Alliance
Lightning and Love Foundation
National Association of Epilepsy Centers
NORSE Institute
Partners Against Mortality in Epilepsy (PAME)
Pediatric Epilepsy Research Consortium
Pediatric Epilepsy Surgery Alliance
Phelan-McDermid Syndrome Foundation
Rare Epilepsy Network (REN) Coordinating Committee
Ring14 USA
Ring20USA
Schinzel-Giedion Syndrome Foundation
STXBP1 Foundation
Tatton Brown Rahman Syndrome Community
TESS Research Foundation
The Cute Syndrome Foundation
The Mark Shaparin Foundation
The Rory Belle Foundation
TSC Alliance
v-ATPase Alliance

State and Local Organizations

Beta Spectrin Foundation
Empowering People's Independence
EPIC LI/Epilepsy Foundation Long Island
Epilepsy Advocacy Network
Epilepsy Alliance Louisiana
Epilepsy Alliance North Carolina
Epilepsy Foundation Alabama
Epilepsy Foundation Alaska
Epilepsy Foundation Arizona
Epilepsy Foundation Arkansas
Epilepsy Foundation Central & South Texas
Epilepsy Foundation Eastern PA
Epilepsy Foundation Florida
Epilepsy Foundation Greater Orange County
Epilepsy Foundation Indiana
Epilepsy Foundation Iowa
Epilepsy Foundation Los Angeles
Epilepsy Foundation Louisiana
Epilepsy Foundation Maryland
Epilepsy Foundation Maryland Chapter
Epilepsy Foundation Metro D.C.
Epilepsy Foundation Mississippi
Epilepsy Foundation Montana
Epilepsy Foundation Nebraska
Epilepsy Foundation Nevada
Epilepsy Foundation New England
Epilepsy Foundation New Jersey
Epilepsy Foundation New Mexico
Epilepsy Foundation North Carolina
Epilepsy Foundation North Dakota
Epilepsy Foundation of Connecticut
Epilepsy Foundation of Delaware
Epilepsy Foundation of Greater Chicago
Epilepsy Foundation of Idaho
Epilepsy Foundation of Kentuckiana
Epilepsy Foundation of Michigan
Epilepsy Foundation of Minnesota
Epilepsy Foundation of Missouri and Kansas
Epilepsy Foundation of Northern California
Epilepsy Foundation of Northeastern New York
Epilepsy Foundation of San Diego County
Epilepsy Foundation of Southeast Tennessee
Epilepsy Foundation of Virginia
Epilepsy Foundation of Wisconsin
Epilepsy Foundation Ohio
Epilepsy Foundation Oklahoma
Epilepsy Foundation Oregon
Epilepsy Foundation South Carolina
Epilepsy Foundation South Dakota
Epilepsy Foundation Texas
Epilepsy Foundation Utah
Epilepsy Foundation Washington
Epilepsy Foundation West Virginia
Epilepsy Services of New Jersey
Epitome of Epilepsy nonprofit organization
HardyHandz Foundation
Joey's Song
Rea of Hope for a Cure Foundation
Sociedad Puertorriqueña de Epilepsia
South Carolina Advocates For Epilepsy
The Epilepsy Institute DBA the Epilepsy Foundation of Metro NY