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 AmericaAmerican Clinical Neurophysiology SocietyAmerican Epilepsy SocietyASXL Rare Research Endowment (ARRE) FoundationCACNA1A FoundationCare and Cure InstituteChild Neurology FoundationCoalition to Cure CHD2COMBINEDBrainCSNK2B FoundationCure CLCN6CURE EpilepsyCureGRIN FoundationCureNURR1CureSHANKCURE SYNGAP1 f/k/a SynGAP Research Fund, 501(c)(3)Danny Did FoundationDevelopmental and Epileptic Encephalopathy Project/DEE-P ConnectionsDravet Syndrome FoundationDup15q AllianceEmpowering EpilepsyEpilepsies Action Network (EAN)Epilepsy Alliance AmericaFamilieSCN2A Foundation Families of SCAMP5GABA-A AllianceGlobal GenesGNB1 Advocacy GroupGRIN2B FoundationHidden Truths ProjectHope for HIEHope for ULDInternational Foundation for CDKL5 ResearchInternational SCN8A AllianceKCNQ2 Cure AllianceKPTN AllianceLennox-Gastaut Syndrome (LGS) FoundationNational Association of Epilepsy CentersNORSE InstitutePartners Against Mortality in EpilepsyPhelan-McDermid Syndrome FoundationPPP3CA Hope FoundationProject CASKPVNH Supports & AwarenessRare Epilepsy NetworkRing 20 USASMC1A FoundationSNAP25 FoundationSTXBP1 FoundationTESS Research Foundation for SLC13A5 EpilepsyThe Anita Kaufman FoundationThe Cute Syndrome FoundationThe Gould Syndrome FoundationThe LCC FoundationThe Sturge-Weber FoundationTSC AllianceWhat the Ef?! PodcastYellow for Yiannis IRF2BPL-NEDAMSS FoundationYWHAG Research FoundationZTTK SON-Shine Foundation
State Or Local Organizations
Epilepsy Advocacy NetworkEpilepsy Alliance LouisianaEpilepsy Foundation AlabamaEpilepsy Foundation AlaskaEpilepsy Foundation ArizonaEpilepsy Foundation ArkansasEpilepsy Foundation Central & South TexasEpilepsy Foundation FloridaEpilepsy Foundation Greater Orange CountyEpilepsy Foundation IndianaEpilepsy Foundation IowaEpilepsy Foundation Long IslandEpilepsy Foundation Los AngelesEpilepsy Foundation LouisianaEpilepsy Foundation MarylandEpilepsy Foundation Metro D.C.Epilepsy Foundation MississippiEpilepsy Foundation MontanaEpilepsy Foundation NebraskaEpilepsy Foundation NevadaEpilepsy Foundation New EnglandEpilepsy Foundation New JerseyEpilepsy Foundation New MexicoEpilepsy Foundation North CarolinaEpilepsy Foundation North DakotaEpilepsy Foundation of CO & WYEpilepsy Foundation of DelawareEpilepsy Foundation of East TNEpilepsy Foundation of GeorgiaEpilepsy Foundation of Greater ChicagoEpilepsy Foundation of Greater Southern IllinoisEpilepsy Foundation of IdahoEpilepsy Foundation of KentuckianaEpilepsy Foundation of MichiganEpilepsy Foundation of MinnesotaEpilepsy Foundation of Missouri and KansasEpilepsy Foundation of Northern CaliforniaEpilepsy Foundation of Southeast TennesseeEpilepsy Foundation OhioEpilepsy Foundation OklahomaEpilepsy Foundation OregonEpilepsy Foundation South CarolinaEpilepsy Foundation South DakotaEpilepsy Foundation TexasEpilepsy Foundation UtahEpilepsy Foundation WashingtonEpilepsy Foundation West VirginiaHardyHandz FoundationPaul's Purple WarriorsSociedad Puertrriqueña de EpilepsiaSouth Carolina Advocates for EpilepsyThe 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.
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SOURCE Epilepsy Foundation
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