MDCC Roster

Guttmacher, Alan E, M.D., Chair, MDCC
Director
Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Copeland, Sara, M.D.
Medical Officer, Genetics Services Branch
Division of Services for Children with Special Health Need
Maternal and Child Health Bureau
Health Resources and Services Administration

Cwik, Valerie A. M.D.
Medical Director and Senior Vice President for Research
Muscular Dystrophy Association

Denger, Brian
Patient Advocate, Parent Project Muscular Dystrophy

Katz, Stephen I., M.D., Ph.D.
Director
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health

Landis, Story C., Ph.D.
Director
National Institute of Neurological Disorders and Stroke
National Institutes of Health

Leggit, Jeffrey C, M.D.
Director
Congressionally Directed Medical Research Programs
U.S. Army Medical Research and Materiel Command

Lord, Shannon
Patient Advocate, Myotonic Dystrophy

Pariser, Anne Ruggles, M.D.
Associate Director for Rare Diseases
Office of New Drugs Center for Drug Evaluation and Research
Food and Drug Administration

Rutkowski, Anne M. M.D.
Vice Chair, Cure CMD

San Agustin, M. Theresa B., M.D.
Rehabilitation Program Specialist
National Institute on Disability and Rehabilitation Research
Department of Education

Shaw, Jack C.
Advocate
Facioscapulohumeral Muscular Dystrophy

Shurin, Susan Blakely, M.D.
Deputy Director
National Heart, Lung and Blood Institute
National Institutes of Health

Swanson, Mark Edward, MPH, M.D.
Senior Medical Adviser
National Center for Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Vacant
Administration on Children and Families

Porter, John D., Ph.D.
Executive Secretary, MDCC
Program Director, Neuromuscular Disease
National Institute of Neurological Disorders and Stroke
National Institutes of Health