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

BOWIE, Md., January 14, 2026 – 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 Northeastern New York 
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 San Diego County
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.