113 Epilepsy Organizations Unite to Express Concerns about Leadership Change at the National Institute of Neurological Disorders and Stroke

BOWIE, Md., Jan. 14, 2026 /PRNewswire/ -- The 113 undersigned organizations, representing people living with epilepsy; caregivers and loved ones; physicians, health care providers; epilepsy centers; epilepsy researchers, and others, unite to voice significant concerns regarding the National Institutes of Health (NIH)'s denial of Dr. Walter Koroshetz's reappointment as Director of the National Institute of Neurological Disorders and Stroke (NINDS). Dr. Koroshetz is widely regarded throughout the neuroscience community as an effective NINDS leader who has demonstrated success in turning scientific discoveries into new treatments and technologies that help people with neurological diseases improve their quality of life.

The brain remains one of the last great frontiers of medical discovery. The abrupt end of Dr. Koroshetz's long-standing tenure as NINDS Director threatens important and urgently needed research in the neurological space, including epilepsy. Epilepsy research is critical to the public and economic health of our nation as it is one of the most common chronic brain disorders, affecting nearly 3.4 million Americans, including 456,000 children and teenagers. Collectively, epilepsy and seizures impose an estimated annual economic burden of $54 billion on the U.S. health care system.

During Dr. Koroshetz's nearly two decades of service at the NINDS, he has overseen several initiatives fueling advances in neuroscience and epilepsy research, including innovative clinical trials, the Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative, the NIH Blueprint for Neuroscience Research, Epilepsy Centers Without Walls, and the Epilepsy Therapy Screening Program that has contributed data supporting the development of at least a dozen anti-seizure medications that have been approved by the Food and Drug Administration (FDA). His leadership has also been instrumental in the success of Curing the Epilepsies, which updates research benchmarks to ensure meaningful progress, and the Interagency Collaborative to Advance Research in Epilepsy (ICARE), a multi-agency working group that coordinates efforts across public and nonprofit sponsors of epilepsy research. His continued stewardship is needed to ensure that scientists find effective ways to prevent, diagnose, treat, manage, and ultimately cure epilepsy.

At a time of profound uncertainty for biomedical research in the United States, including the absence of permanent leadership at 14 of the NIH's 27 Institutes and Centers, the loss of Dr. Koroshetz's steady and experienced leadership at NINDS risks further disruption and undermines the Institute's critical work in epilepsy and other neurological conditions. This impact will be profoundly felt by the 54% of Americans who are affected by neurological disorders across the country. We urge the NIH to reconsider this decision and, at a minimum, take swift and decisive action to ensure stable, qualified leadership at NINDS that prioritizes scientific integrity, evidence-based practice, and facilitates meaningful and sustained progress in epilepsy research.

National Organizations
Epilepsy Foundation of America
American Clinical Neurophysiology Society
American Epilepsy Society
ASXL Rare Research Endowment (ARRE) Foundation
CACNA1A Foundation
Care and Cure Institute
Child Neurology Foundation
Coalition to Cure CHD2
COMBINEDBrain
CSNK2B Foundation
Cure CLCN6
CURE Epilepsy
CureGRIN Foundation
CureNURR1
CureSHANK
CURE SYNGAP1 f/k/a SynGAP Research Fund, 501(c)(3)
Danny Did Foundation
Developmental and Epileptic Encephalopathy Project/DEE-P Connections
Dravet Syndrome Foundation
Dup15q Alliance
Empowering Epilepsy
Epilepsies Action Network (EAN)
Epilepsy Alliance America
FamilieSCN2A Foundation
Families of SCAMP5
GABA-A Alliance
Global Genes
GNB1 Advocacy Group
GRIN2B Foundation
Hidden Truths Project
Hope for HIE
Hope for ULD
International Foundation for CDKL5 Research
International SCN8A Alliance
KCNQ2 Cure Alliance
KPTN Alliance
Lennox-Gastaut Syndrome (LGS) Foundation
National Association of Epilepsy Centers
NORSE Institute
Partners Against Mortality in Epilepsy
Phelan-McDermid Syndrome Foundation
PPP3CA Hope Foundation
Project CASK
PVNH Supports & Awareness
Rare Epilepsy Network
Ring 20 USA
SMC1A Foundation
SNAP25 Foundation
STXBP1 Foundation
TESS Research Foundation for SLC13A5 Epilepsy
The Anita Kaufman Foundation
The Cute Syndrome Foundation
The Gould Syndrome Foundation
The LCC Foundation
The Sturge-Weber Foundation
TSC Alliance
What the Ef?! Podcast
Yellow for Yiannis IRF2BPL-NEDAMSS Foundation
YWHAG Research Foundation
ZTTK SON-Shine Foundation

State Or Local Organizations
Epilepsy Advocacy Network
Epilepsy Alliance Louisiana
Epilepsy Foundation Alabama
Epilepsy Foundation Alaska
Epilepsy Foundation Arizona
Epilepsy Foundation Arkansas
Epilepsy Foundation Central & South Texas
Epilepsy Foundation Florida
Epilepsy Foundation Greater Orange County
Epilepsy Foundation Indiana
Epilepsy Foundation Iowa
Epilepsy Foundation Long Island
Epilepsy Foundation Los Angeles
Epilepsy Foundation Louisiana
Epilepsy Foundation Maryland
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 CO & WY
Epilepsy Foundation of Delaware
Epilepsy Foundation of East TN
Epilepsy Foundation of Georgia
Epilepsy Foundation of Greater Chicago
Epilepsy Foundation of Greater Southern Illinois
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 Southeast Tennessee
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
HardyHandz Foundation
Paul's Purple Warriors
Sociedad Puertrriqueña de Epilepsia
South Carolina Advocates for Epilepsy
The Epilepsy Institute dba The Epilepsy Foundation of Metropolitan New York

About Epilepsy

Epilepsy is defined by a tendency to experience seizures—sudden, abnormal bursts of electrical activity in the brain that can disrupt behavior, awareness, and bodily control. There are multiple types of seizures, and they can look different in different people. It is a spectrum disease comprised of many diagnoses, including a growing number of rare epilepsies that are increasingly being identified through their genetic links. Beyond seizures, epilepsy can also lead to challenges such as fatigue, memory difficulties, mood changes, anxiety, and trouble concentrating, all of which can significantly impact daily life. Visit epilepsy.com to learn more.

SOURCE Epilepsy Foundation