Biographies of MDCC Members

Duane F. Alexander, M.D. - Dr. Alexander has been the Director of the NICHD since 1986. As NICHD Director, he oversees programs relating to the reproductive, developmental, rehabilitative, and behavioral processes that determine the health of children, adults, families, and populations. Dr. Alexander is a diplomate of the American Board of Pediatrics, and a member of the American Academy of Pediatrics, the Society for Developmental Pediatrics, and the American Pediatric Society.

Donavon Decker - Mr. Decker is an air-traffic controller in Huron, South Dakota. In 1999, he was the recipient of the first-ever experimental gene therapy for muscular dystrophy, working with investigators from the University of Pennsylvania and Ohio State University Medical Center. In 2001, Mr. Decker testified before the Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education about his experience with muscular dystrophy and the need for further research and education.

Pat Furlong - Ms. Furlong, the mother of two sons with Duchenne muscular dystrophy (DMD), founded the Parent Project Muscular Dystrophy in 1994. Today, it is the largest national grassroots organization devoted to DMD. Ms. Furlong has been a nurse and nurse educator, and was instrumental in the development of the Duchenne Muscular Dystrophy Research Center at the University of Pittsburgh. She has testified before Congressional committees on muscular dystrophy, and was part of the primary team that submitted and actively lobbied for the MD CARE Act.

Sharon Hesterlee, Ph.D. - Dr. Hesterlee, whose professional training is in neuroscience, is the Director of Research Development for the Muscular Dystrophy Association (MDA). Dr. Hesterlee actively participated in advancing the MD-CARE Act, and is highly knowledgeable about neuromuscular disease research being conducted around the world.

CAPT E. Melissa Kaime, M.D., FACP – CAPT Kaime is a board certified hematologist, oncologist and internist who serves as the Deputy Director of the Congressionally Directed Medical Research Programs (CDMRP) Office, US Army Medical Research and Materiel Command. CDMRP ensures the sponsorship, and manages a research portfolio, of peer-reviewed meritorious science that meets the intent of Congress interests, including muscular dystrophy.

Stephen I. Katz, M.D., Ph.D. - Dr. Katz has been Director of the NIAMS since August 1995; muscle biology and the muscular dystrophies are areas of research emphasis for NIAMS. Dr. Katz has served many professional societies in leadership positions including as a member of the Board of Directors and President of the Society for Investigative Dermatology, on the Board of the Association of Professors of Dermatology, as Secretary-General of the 18th World Congress of Dermatology in 1992, as Secretary-Treasurer of the Clinical Immunology Society, and as Past President of both the International League of Dermatological Societies and the International Committee of Dermatology. He is also a Senior Investigator in the Dermatology Branch of the National Cancer Institute. Dr. Katz is a member of the National Academy of Sciences Institute of Medicine.

Story C. Landis, Ph.D. - Dr. Landis has been the Director of the National Institute of Neurological Disorders and Stroke since September 2003, and had previously been the NINDS Scientific Director, since 1995. Dr. Landis is widely recognized for her research on the development of the nervous system and has made many fundamental contributions to the understanding of developmental interactions required for synapse formation. She has garnered many honors and awards and is an elected fellow of the Academy of Arts and Sciences, the American Association for the Advancement of Science, and the American Neurological Association.

Patricia A. Morrissey, Ph.D. - Dr. Morrissey is the Commissioner, Administration on Developmental Disabilities. In this capacity, she administers developmental disabilities programs authorized by the Developmental Disabilities Assistance and Bill of Rights Act of 2000, and advises the Secretary of HHS on Federal disability policy. Dr. Morrissey previously held positions in the private sector, where she consulted on means to provide opportunities and services to individuals with disabilities, and as a Congressional staffer, where she was responsible for drafting and guiding through to enactment important legislation on federal disability policy.

Daniel Paul Perez - founder, President and CEO of the FSH Society.  A graduate of Harvard College, he has extensive experience in scientific software and database design and a strong biology background.  Mr. Perez is in contact with professionals and fellow facioscapulohumeral muscular dystrophy (FSHD) patients worldwide to promote and fund FSHD research. He has extensive interactions with NIH, Members of Congress, and other muscular dystrophy organizations to advance FSHD research.

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. Currently, Dr. San Agustin leads and coordinates the Congressionally-mandated Model Spinal Cord Injury and Burn Injury Rehabilitation Programs and serves as a Project Officer in the Traumatic Brain Injury Program, Rehabilitation Research and Training Center in Neuromuscular Diseases and other health-related rehabilitation research at the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education. She is a member of several Advisory and Federal Interagency Coordinating Committees and co-chairs the Congressionally-mandated Interagency Committee on Disability Research (ICDR), Subcommittee on Medical Rehabilitation, which reports to Congress annually. Dr. San Agustin is well-published in the New England Journal of Medicine, Journal of Burn Care and Research, and various Human Genetics and Otolaryngology Journals. She is a chapter contributor to 'Welner's Guide to the Care of Women with Disabilities', published in 2004.

Philip H. Sheridan, M.D. - Dr. Sheridan is a board certified neurologist and pediatrician who serves as a clinical reviewer for the Division of Neurology Products in the Center for Drug Evaluation and Research (CDER) of the Food and Drug Administration.  His duties include first level review of the safety and efficacy of therapies for muscular dystrophy.  He previously served as Chief of the NIH Developmental Neurology Branch and Director of the NIH Antiepileptic Drug Development Program.

Susan B. Shurin, M.D. - Dr. Shurin has been in the position of Deputy Director, National Heart, Lung, and Blood Institute (NHLBI) since February 2006. She was Professor of Pediatrics and Oncology at Case Western Reserve University in Cleveland, OH, where she was also Hospital Director of the Division of Pediatric Hematology-Oncology. Early in her career, she studied the physiology of phagocytes, mechanisms of hemolysis, and iron overload. She started her activities in clinical research with the development of desferrioxamine for chronic iron overload in thalassemia, and continued investigations of multiple aspects of hematologic and pediatric oncologic disorders. She has held leadership positions in the Children's Oncology Group and multiple professional societies.

Currently, Dr. Shurin is responsible for oversight of the clinical research portfolio at the NHLBI, including its 85 Data and Observational Safety Monitoring Boards. She serves on the Institute and Center Director Advisory Committee for the CTSAs. She is Acting Director of the Division of Blood Diseases and Resources at the NHLBI, in which capacity she is leading a realignment of the sickle cell disease research portfolio.

Bradley Stephenson, J.D. - Mr. Stephenson is an attorney from San Antonio, Texas. He is a patient advocate with Becker muscular dystrophy who has been active in encouraging Congress to increase federal involvement with regard to muscular dystrophy, and was specifically involved in advocacy for the MD-CARE Act.  Mr. Stephenson's undergraduate and graduate background is in Political Science and Political Management, and he has work experience in public relations and political campaigns at the local, state and federal level.

Porter, John D., Ph.D.
Executive Secretary, MDCC
Program Director, Neuromuscular Disease, NINDS, NIH
Email: porterjo@ninds.nih.gov