Membership

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Diana Bianchi M.D.
Chair, MDCC; Federal Agency Representative
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institute of Health
Bethesda, Maryland
 
Read More about Diana Bianchi M.D.
Dr. Bianchi is the Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Dr. Bianchi was appointed as Director (October, 2016). Several of the muscular dystrophies affect young children and thus are a research area of interest to NICHD. Dr. Bianchi recently received two major lifetime achievement awards: the Landmark Award in 2015 from the American Academy of Pediatrics in recognition of her research and contributions to genetics and newborn care, and the Maureen Andrew Award for Mentoring in 2016 by the Society for Pediatric Research, which recognized her commitment to mentoring the next generation of clinician-scientists.) She was elected to membership in the Institute of Medicine (now National Academy of Medicine) in 2013.

 

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Robert Carter, M.D., Ph.D.
Federal Agency Representative
Acting Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health
Bethesda, MD
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Vacant
Federal Agency Representative
United States Department of Education
Washington, DC
 
 
 

 

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Gustavo Dziewczapolski, Ph.D.
Public Member
Scientific Director, CureCMD
San Diego, California
Term End: December 31, 2020
Read More about Gustavo Dziewczapolski, Ph.D.
Dr.  Dziewczapolski brings to the table the voice of thousands of affected individuals, who have given their trust to Cure CMD as the source for current information about advances in research, diagnostic and care guidelines, as well as new therapies and clinical trial opportunities for the spectrum of congenital muscular dystrophy in particular, and the field of neuromuscular disease in general.  Dr. Dziewczapolski is leveraging over 20 years of neuroscience research including interdisciplinary projects at three different international Centers of Excellence funded by the National Parkinson’s Foundation: Buenos Aires, Paris, and San Diego; interinstitutional NIH-funded program project grants for more than 10 years, involving 4 basic research groups, 3 core facilities, statistics and translational units.

 

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Ryan Fischer
Public Member
Senior Vice President, Community Engagement, Parent Project Muscular Dystrophy
Hackensack, New Jersey 
Term End: December 31, 2020
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Ryan oversees strategic community engagement, patient preference research, and grassroots advocacy, guiding the patient community on how to interact with members of Congress and federal agencies. Ryan currently leads PPMD’s national grassroots outreach network, PPMD CONNECT. These parent-led state-specific groups serve to connect families with local support and work to turn the catastrophic nature of the diagnosis of Duchenne into advocacy and action to impact outcomes in Duchenne. Ryan guides the patient community by empowering their individual interactions with members of Congress and federal agencies.

 

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Eugene Freund, M.D., MSPH, CAPT USPHS
Federal Agency Representative
Medical Officer, Centers for Medicare and Medicaid Services
Washington, D.C.
Term End: December 31, 2020
Read More about Eugene Freund, M.D., MSPH, CAPT USPHS
Dr. Freund is a practicing physician and a medical officer in the center for consumer information and insurance oversight.  He is providing clinical and public health expertise for the Center and providing guidance on clinical coverage issues and assessing compliance with regulatory requirements such as delivery of essential health benefits, non-discrimination, and provider network adequacy.

 

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Devanand Jillapalli, M.D.
Federal Agency Representative
Medical Officer,
Office of Orphan Products Development, Office of the Commissioner,
Food and Drug Administration
Silver Spring, Maryland
Term End: December 31, 2020
Read More about Devanand Jillapalli, M.D.
Dr. Jillapalli is a neurologist with board certification in neurophysiology and electromyography, and with extensive experience in diagnosis and treatment of patients with neuromuscular disorders. Since 2006, he has been a Medical Officer at the Food and Drug Administration (FDA) and has been involved in regulatory review of candidate therapeutics for neurological indications, including neuromuscular disorders. Dr. Jillapalli also has experience in the Rare Disease Program at FDA. Through clinical practice and regulatory review, he has considerable expertise in the muscular dystrophies and has co-authored a publication on drug development and regulatory considerations for Duchenne muscular dystrophy.

 

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James P. Kiley, Ph.D.
Federal Agency Representative
Director, Division of Lung Diseases, National Heart, Lung and Blood Institute (NHLBI), National Institutes of Health
Bethesda, Maryland
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Read More about James P. Kiley, Ph.D.
Dr. Kiley joined the National Heart, Lung and Blood Institute (NHLBI) in 1984 as Health Scientist Administrator in the Institute's Division of Lung Diseases. The muscular dystrophies are areas of research emphasis for NHLBI. From 1989-1994, Dr. Kiley served as Chief of the Division's Airways Diseases Branch. From 1995-2000 he served as Director of the National Center on Sleep Disorders Research, which is part of NHLBI. He was named Director of the Division of Lung Diseases in 2000. Dr. Kiley's primary research interests include obstructive and interstitial lung diseases and sleep. Dr. Kiley is the author or co-author of more than 85 scientific publications and abstracts. He has served as a reviewer for the Journal of Applied Physiology, Chest, Respiratory Physiology, the Journal of the U.S. Public Health Service, and the Journal of Clinical Investigations.

 

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Walter Koroshetz, M.D.
Federal Agency Representative
Director, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health
Bethesda, Maryland
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Read More about Walter Koroshetz, M.D.
Dr. Koroshetz is the Director of NINDS. He served as the NINDS Deputy Director since January 2007. Disorders of brain, nerve and muscle are areas of research emphasis for NINDS. Before joining NINDS, Dr. Koroshetz served as vice-chair of the neurology service and director of stroke and neurointensive care services at Massachusetts General Hospital (MGH). He was also a professor of neurology at Harvard Medical School and led neurology resident training at MGH between 1990 and 2006. His research work spanned basic neurobiology to clinical trials in stroke and Huntington’s disease with a major focus in developing neuroimaging techniques to chart disease progression and enable therapeutic development.

 

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Jennifer Levy, Ph.D.
Public Member
Scientific Director Coalition to Cure Calpain 3
 
Term End: December 31, 2021
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Marielena McGuire, Ph.D.
Federal Agency Representative 
 
Congressionally Directed Research Programs
Department of Defense
Fort Detrick, Maryland 
Term End: December 31, 2020
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Glen H. Nuckolls, Ph.D.
Executive Secretary, MDCC
Program Director, Extramural Research Program, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health
Bethesda, Maryland
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Read More about Glen H. Nuckolls
Glen Nuckolls is a member of the Neurogenetics Cluster and is the NINDS point of contact for the muscular dystrophies, spinal muscular atrophy, myasthenia gravis, and some other inherited neuromuscular diseases. He is the Executive Secretary of the interagency Muscular Dystrophy Coordinating Committee and NIH coordinator for the Wellstone Muscular Dystrophy Cooperative Research Centers. Glen received his Ph.D. in cell biology and anatomy from the University of North Carolina and completed postdoctoral training in the Department of Biochemistry at Stanford University. He joined the intramural program of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) as a Staff Fellow in 1995 and led a research group studying cartilage biology and skeletal development. He moved to the extramural programs of NIAMS in 2003, as the Scientific Review Officer for the NIAMS training and career development study section. In 2004 he became the NIAMS Program Director for Skeletal Muscle Diseases and managed the grants portfolio on the muscular dystrophies, channelopathies, atrophy, and other muscle disorders. He also served as the acting Director of the Division of Extramural Activities for NIAMS in 2009.

 

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Daniel Paul Perez
Public Member
President and Chief Executive Officer, Facioscapulohumeral Society, Inc.
Watertown, Massachusetts
Term End: December 31, 2020
Read More about Daniel Paul Perez
Mr. Perez, who has Facioscapulohumeral Muscular Dystrophy (FSHD), is the founder of the FSH Society, and currently serves as its President and CEO. He has a strong background in biology, including a B.A. degree from Harvard, and extensive experience in software development and design, particularly with regard to scientific applications. Mr. Perez is in regular contact with scientists working on FSHD around the world, and he has had extensive interactions with NIH, Members of Congress, and other muscular dystrophy organizations; his organization, the FSH Society, has funded research in FSHD and has organized the FSHD Champions group, an alliance of patient advocacy groups working together to accelerate FSHD research. Mr. Perez has FSHD and is one of two MDCC members who are, themselves, directly affected by muscular dystrophy.

 

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John Porter, Ph.D.
Public Member
Consultant, Myotonic 
Lewes, Delaware
Term End: December 31, 2021
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Vacant
Federal Agency Representative
Health Resources and Services Administration
Rockville, Maryland
Term End: December 31, 2020

 

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M. Theresa B. San Agustin, M.D.
Federal Agency Representative
Program Manager, National Institute on Disability, Independent Living and Rehabilitation Research, Administration for Community Living
Washington, District of Columbia
Term End: December 31, 2020
Read More about M. Theresa B. San Agustin, M.D.
Dr. San Agustin lost her hearing at the age of 4. She began her medical career as a Staff Fellow in Molecular Genetics at the National Institute on Deafness and Other Communication Disorders (NIDCD), NIH. In her current position at the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) within the Administration for Community Living, Dr. San Agustin coordinates and provides leadership for the Congressionally-mandated Model Spinal Cord Injury and Field-Initiated Projects Programs. She also serves as a project officer for the Traumatic Brain Injury and Burn Model System Programs and the Rehabilitation Research and Training Center in Neuromuscular Diseases. In addition, Dr. San Agustin is a member of several advisory and federal interagency coordinating committees, and she has published widely in the New England Journal of Medicine, Journal of Burn Care and Research, and various human genetics and otolaryngology journals. She was a chapter contributor to 'Welner's Guide to the Care of Women with Disabilities', published in 2004.

 

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Kristin Stephenson (Ad Hoc)
Public Member
Vice President of Policy and Advocacy
Muscular Dystrophy Association
 
Term End: December 31, 2020
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Natalie Street
Federal Agency Representative
Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
Atlanta, Georgia
Term End: December 31, 2020
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Cheryl Williams
Federal Agency Representative
Social Security Administration
Baltimore, Maryland
Term End: December 31, 2021
Read More about Cheryl Williams
Ms. Williams provides direction and guidance in developing all regulations, policy, and procedures necessary to adjudicate claims for SSA’s disability program.