ICARE: Interagency Collaborative to Advance Research in Epilepsy

ICARE: Interagency Collaborative to Advance Research in Epilepsy

Epilepsy research needs reach across the missions of multiple NIH Institutes and Centers and across many organizations outside the NIH.  As the primary NIH Institute for epilepsy research, NINDS leads this working group, with broad representation from the NIH, other Federal agencies, and the research and patient advocacy communities. Annual meetings provide a forum for sharing information about ongoing and planned epilepsy research activities, highlighting advances and discussing needs and opportunities, and promoting increased collaboration toward common research goals.

ICARE Meetings

ICARE Member Organizations and Representatives

ICARE Meetings

Meeting Date

ICARE Member Organizations and Primary Representatives

National Institutes of Health (NIH)

National Institute of Neurological Disorders and Stroke (NINDS)
Walter Koroshetz, MD, ICARE Chair
Acting Director, NINDS

Brandy E. Fureman, Ph.D.
Program Director, Epilepsy
Channels, Synapses, and Neural Circuits Cluster

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Joan A. McGowan, PhD
Director, Division of Musculoskeletal Diseases

National Institute on Alcohol Abuse and Alcoholism (NIAAA)
Qi-Ying Liu, MD, MSci
Division of Neuroscience and Behavior

National Institute of Child Health and Human Development (NICHD)
Melissa Parisi, PhD
Branch Chief of the Intellectual and Developmental Disabilities

National Institute on Drug Abuse (NIDA)
Roger Sorensen, PhD, MPA
Division of Basic Neuroscience and Behavioral Research, Functional Neuroscience Research Branch

National Human Genome Research Institute (NHGRI)
Jonathan M. Gitlin, PhD
Policy & Program Analysis Branch

National Heart, Lung and Blood Institute (NHLBI)
David A. Lathrop, PhD, FAHA
Deputy Chief, Heart Failure & Arrhythmia Branch, Division of Cardiovascular Sciences

National Institute of Mental Health (NIMH)
Douglas L. Meinecke, PhD
Clinical Neuroscience Research Branch

National Institute on Aging (NIA)
Bradley C. Wise, PhD
Chief, Neurobiology of Aging Branch, Division of Neuroscience

National Institute of Nursing Research (NINR)
Lois Tully, PhD
Program Director

National Institute of Biomedical Imaging and Bioengineering (NIBIB)
Steven Krosnick, MD
Program Director

Office of Rare Diseases Research (ORDR)
David J. Eckstein, PhD
Senior Health Scientist Administrator

Fogarty International Center (FIC)
Kathleen Michels, PhD
Division of International Training and Research

Other Federal Partners

Centers for Disease Control and Prevention (CDC)
Rosemarie Kobau, MPH, MAPP
Epilepsy Program Team Lead, CDC Epilepsy Program
Arthritis, Epilepsy and Well-Being Branch (AEWB)
National Center for Chronic Disease Prevention
and Health Promotion (NCCDPHP)

Stuart K. Shapira, MD, PhD
Chief Medical Officer and Associate Director for Science
National Center on Birth Defects and
Developmental Disabilities (NCBDDD)

Centers for Medicare and Medicaid Services (CMS)
Joseph D. Hutter, MD, MA
LCDR, US Public Health Service
CMS Center for Clinical Standards and Quality

Department of Defense (DOD)
Anthony Pacifico, PhD
Congressionally Directed Medical Research Programs, 
Epilepsy Research Program

Department of Veterans Affairs (VA)
Glenn Graham, MD
Acting National Director for Neurology

Paul Rutecki
Acting National Director, VA Epilepsy Centers of Excellence

Food and Drug Administration (FDA)
Norman Hershkowitz, MD, PhD
Team Leader for antiepileptic drugs
Center for Drug Evaluation and Research (CDER)

Health Resources and Services Administration (HRSA)
Sadie Silcott, MBA, MPH
Public Health Analyst

Nongovernmental Organizations

American Epilepsy Society (AES)
Amy Brooks Kayal, MD, PhD
President (2015)
University of Colorado

AES/NINDS Epilepsy Research Benchmarks Stewards
Raymond J. Dingledine, PhD
AES/NINDS Benchmark Stewards Committee Chair
Emory University

Citizens United for Research in Epilepsy (CURE)
Susan Axelrod
President and Founder

Dravet Syndrome Foundation
Abigail Hemani
Board of Directors President

Mary Anne Meskis
Executive Director

Epilepsy Foundation (EF)
Jan Buelow, PhD, FAAN
Vice President of Research & Programs

Epilepsy Study Consortium
Dennis Dlugos, MD
Children’s Hospital of Philadelphia

Epilepsy Leadership Council (ELC, formerly Vision 20-20 - representing multiple epilepsy organizations)
Barbara Kroner, PhD
Board Member, ELC; Aicardi Syndrome Foundation

Patient Centered Outcomes Research Institute (PCORI)
Sarita Wahba MSPH, MS
Program Officer, CER Methods and Infrastructure

Tuberous Sclerosis Alliance (TS Alliance)
Kari Luther Rosbeck
President and Chief Executive Officer