SCIENTIFIC ADVISORY BOARD
Alan Beggs, Ph.D.
Alan Beggs is Associate Professor of Pediatrics at Harvard Medical School and a Research Associate at the Department of Medicine, Division of Genetics, Children’s Hospital in Boston, MA.
Dr. Beggs’ research is aimed at understanding the structures and function of the proteins that make up skeletal muscle fibers. Beggs and colleagues are taking two approaches to the problem. The first involves identifying and characterizing new skeletal muscle genes and proteins. The second entails identifying genetic mutations that cause human neuromuscular disease. These simultaneous approaches should enable them to correlate their basic muscle biology findings with their studies on muscle tissue in patients with neuromuscular diseases. The diseases under study include nemaline myopathy, myotubular myopathy, congenital fiber type disproportion (CFTC), multiminicore disease, and congenital myopathies with non-specific muscle findings.
Ching Wang, M.D., Ph.D.
Ching Wang is Associate Professor of Neurology at Stanford Medical School and Director of the Pediatric Neuromuscular clinic at Lucile Packard Children’s Hospital. Dr. Wang is currently conducting clinical trial with Spinal Muscle atrophy patients.
Helen Blau, Ph.D.
Helen Blau is the Donald E. and Delia B. Baxter Professor for Stem Cell Biology at the School of Medicine at Stanford University.
Dr. Blau is an elected member of the Institute of Medicine of the National Academy of Sciences, a member of the American Academy of Arts and Sciences, a fellow of the American Academy for the Advancement of Sciences and a recipient of numerous national and international awards. Her research expertise is in the area of nuclear reprogramming and stem cell biology, and she is renowned for her work on muscle stem cells and tissue regeneration in normal and dystrophic muscle of mice and humans.
James Spudich, Ph.D.
James Spudich is Professor of Biochemistry at Stanford University. His specific research interests include all things actin. Dr. Spudich is co-founder of Cytokinetics, a company dedicated to the discovery, development and commercialization of therapeutics.
Nanci Yuan, M.D.
Nancy Yuan is Associate Professor of Pediatric pulmonary medicine at Stanford University. Dr. Yuan’s research interests are concentrated on the pulmonary complications due to neuromuscular disease, cerebral palsy/hyper tonicity, scoliosis, and sleep disorders in the pediatric population.
Susan Iannaccone, M.D.
Susan T. Iannaccone, MD, FAAN, is the Jimmy Elizabeth Westcott Distinguished Chair in Pediatric Neurology, Professor of Neurology and Pediatrics at the University of Texas Southwestern Medical Center, and Director of Child Neurology at Children's Medical Center Dallas.
Dr. Iannaccone was Principal Investigator for AmSMART, American Spinal Muscular Atrophy Randomized Trials, from 2000 to 2008, with funding from the National Institutes of Health. She has been site Principal Investigator for clinical trials in Duchenne muscular dystrophy and hereditary neuropathies. Her Neuromuscular Medicine clinic meets four times per week and serves a population of over 500 children with neuromuscular diseases. She is mentor for a pediatric NMM fellow each year and Director of the annual Carrell-Krusen Neuromuscular Symposium.
John R. Bach, M.D.
John R. Bach, M.D. has written 7 books and 450 articles and book chapters on managing people with neuromuscular insufficiency and failure and the extubating and decanulating of patients who are unable to breathe unaided. Dr. Bach is a professor at the UMDNJ-New Jersey Medical School where he is currently:(a) Professor of Physical Medicine and Rehabilitation, including Research in Physical Medicine and Rehabilitation and Neuromuscular-Pulmonary Rehabilitation; (b) Vice Chairman of the Department of Physical Medicine and Rehabilitation; (c) Professor of Neurosciences in the Department of Neurosciences; (d) Director of Research and Associate Medical Director of the Department of Physical Medicine and Rehabilitation at University Hospital, Newark, N.J.; (e) Co-Director of the Medical School's Jerry Lewis Muscular Dystrophy Association Clinic; and (f) Medical Director of the Center for Ventilator Management Alternatives at University Hospital, Newark, N.J. He is also a fellow of the Association of Academic Physiatrists, the American College of Chest Physicians, and the American Academy of Physical Medicine and Rehabilitation.
David P. Roye, Jr., MD
Dr. Roye is the St. Giles Professor of Pediatric Orthopaedic Surgery at Columbia University, the Attending Orthopaedic Surgeon at NewYork-Presbyterian Hospital, the Director of Pediatric Orthopaedic Surgery at Morgan Stanley Children's Hospital of NewYork-Presbyterian, the Executive Medical Director of the Columbia Cerebral Palsy Center, and the Medical Director of the Children of China Pediatrics Foundation. He has earned numerous honors and awards, including: the American Academy of Orthopaedic Surgeons Humanitarian Award, the Order of Merit award from the Orthopaedic Research and Education Foundation, ranking in America's Top Doctors by Castle Connolly, and recognition by the Children’s Dream Foundation for his contributions to improving children’s healthcare. He has authored hundreds of articles, written text books, served on editorial committees for prestigious medical journals and has lectured throughout the world. Dr. Roye also founded International Healthcare Leadership, a non-profit organization which designs and implements educational programs in health care management and policy in emerging nations.
Dana graduated from University of Southern California with a B.S. in Business Administration. She thrived as a recruiter in the area of Human Resources for a variety of companies in the fields of Entertainment, Investment Banking and Technology. In 2002, Dana partnered with her husband in starting Agile PT. When her youngest child of three was born with NM, Dana founded A Foundation Building Strength and invests her time in working to better the lives of those affected by this rare disease.
Patricia Mitchell's daughter Kathryn (Katie) Mitchell was diagnosed with Nemaline Myopathy in 2008, at the age of 2. Patricia has her Masters degree in business from Michigan State University. She currently works for the global health care company Baxter International, as a consultant to sales teams in the areas of sales force effectiveness and commission plan design. Patty lives with her family in Libertyville, Illinois.
Rob Reich, Ph.D.
Rob Reich got involved with A Foundation Building Strength through his passion for social entrepreneurship and philanthropy, and his desire to make a difference.
Rob Reich is Associate Professor of Political Science, Ethics in Society, and, by courtesy, Education, at Stanford University. He also holds appointments in the following programs: Ethics in Society, American Studies, Urban Studies, and the Center for Social Innovation in the School of Business, the Center for the Study of Philanthropy and Civil Society, the Haas Center for Public Service, and in the School of Education. He is the author of Bridging Liberalism and Multiculturalism in American Education (University of Chicago Press, 2002), co-author of Democracy at Risk: How Political Choices Undermine Citizen Participation and What We Can Do About It (Brookings Institution Press, 2005), and co-editor of Toward a Humanist Justice: The Political Philosophy of Susan Moller Okin (Oxford University Press, 2008).
Rob has received fellowships from the Spencer Foundation, the Stanford Humanities Center and the Center for Human Values at Princeton University.
Roger Kornberg, Ph.D.
Biochemist and professor of structural biology at Stanford University School of Medicine. Awarded the Nobel Prize in Chemistry in 2006 for his studies of the process by which genetic information from DNA is copied to RNA, "the molecular basis of eukaryotic transcription".