About Us:

Board of Directors

SMA Foundation
  • Dinakar SinghChairman of the Board

    Dinakar Singh is the founding partner of TPG- Axon Capital, a leading global investment firm. Through offices in New York, London, Hong Kong and Tokyo, TPG-Axon invests across global markets and asset classes. The firm was founded by Mr. Singh in late 2004 in partnership with Texas Pacific Group.

    He was previously a partner at Goldman Sachs, where he was co-head of the Principal Strategies department. During his 14 years at Goldman Sachs, he served on a number of the firm’s key leadership committees, including the Securities Division Operating Committee, Risk Committee, Partnership Committee, and Asia Management Committee.

    He serves on the Yale University Investment Committee, Trilateral Commission, and the Boards of the New York Public Library, Columbia University Medical Center, The Rockefeller University and Cold Spring Harbor Laboratories.

  • Cynthia JoyceVice-Chair

    Cynthia Joyce serves as Vice-Chair of the Board of the SMA Foundation. She was elected to the Board of Directors in 2011, after serving for eight years as the Executive Director of the SMA Foundation. Ms. Joyce, the first employee of the SMA Foundation, was responsible for the Foundation’s early efforts to build awareness and momentum in the field. Under her leadership, the SMA Foundation has facilitated major increases in SMA research dollars allocated by federal, corporate, and non-profit funders and has emerged as the leading single sponsor of research in the field. Ms. Joyce also served as the facilitator of the International Coordinating Committee for clinical trials in SMA (ICC) from 2005-2010.

    Previously, Ms. Joyce served as Director of the American Academy of Neurology (AAN) Foundation, a research support arm of the Academy. Prior to working at the AAN, Ms. Joyce was a marketing director at Cephalon and at Ciba Pharmaceuticals (now Novartis). She holds a BS from the University of Chicago and an MS in Botany from the University of Minnesota. She has served as an advisor to numerous organizations including the Epilepsy Foundation and the ALS Association and is a strong advocate for non-profit involvement in therapeutics development.

  • David M. Weil, Esq.Treasurer

    Mr. David M. Weil is a partner of TPG-Axon Capital, a leading global investment firm. Through offices in New York, London, Hong Kong, and Tokyo, TPG-Axon invests over $15 billion of investor capital across an investment spectrum ranging from public equities to specialty credit and private investments.

    Mr. Weil was previously a partner at Goldman Sachs. Over his 15 year career at Goldman, his roles included serving as: the Chief Operating Officer of the Investment Management Division, the firm’s Global Treasurer, head of the firm’s Finance, Operations, and Administration division in Asia, and Chief Financial Officer for Goldman Sachs’ Whitehall real estate funds. Prior to joining Goldman Sachs, Mr. Weil worked for First Boston, Judge Leonard B. Sand, and Ivins, Phillips & Barker.

    Mr. Weil received a BA from Yale University and a JD from Yale Law School.

  • Douglas G. Cole, MD 

    Dr. Cole is a General Partner at Flagship Ventures. He obtained post-graduate training in medicine at the Johns Hopkins Hospital in Baltimore, MD and in neurology at the Massachusetts General Hospital in Boston, MA. In 1992, Doug was appointed Instructor in Neurology at Harvard Medical School and an Assistant in Neurology at the Massachusetts General Hospital. He established a research program investigating the mechanistic basis of neuronal signaling events and plasticity in neuro-psychiatric disorders with the support of the NIH and several non-profit research foundations. Doug holds an AB magna cum laude in English from Dartmouth College and an MD from the University of Pennsylvania School of Medicine.

    Doug has led Flagship’s investments in CombinatoRx and Alinea Pharmaceuticals. He co-founded Ensemble Discovery with Noubar Afeyan and Professor David Liu of Harvard University, and he served as CEO of the company in its initial stages. He currently serves on the Board of Directors of CombinatoRx, Ensemble Discovery, Aveo Pharmaceuticals, and CGI Pharmaceuticals and is an Observer on the Board of Directors of Alinea. He has been actively involved with RenovisHypnion and Genstruct.

  • William T. Coleman, Jr., Esq. 

    William Coleman is a senior partner and senior counselor of the Litigation Department of O’Melveny & Meyers.

    He was a member of the Executive Committee of the Trilateral Commission and the Council on Foreign Relations as well as a former member of the Board of Overseers of Harvard University. He sat on the Boards of Directors of AMAX, Chase Manhattan Bank, N.A., Chase Manhattan Corporation, CIGNA Corporation, IBM Corporation, Pan American World Airways, PepsiCo., Inc., Philadelphia Electric Company, and New American Holdings. Mr. Coleman was one of the authors of the famous Brown vs. Board of Education legal brief.

    Mr. Coleman served as Secretary of the U.S. Department of Transportation during the Ford Administration.

    Mr. Coleman served as a law clerk for the Honorable Herbert F. Goodrich, U.S. Court of Appeals, Third Circuit, and the Honorable Felix Frankfurter, U.S. Supreme Court Admitted, Washington, D.C. Mr. Coleman graduated summa cum laude, Phi Beta Kappa, Pi Gamma Mu with an AB from the University of Pennsylvania. He went on to graduate magna cum laude with an LLB from Harvard University. While at Harvard, Mr. Coleman also served as editor of the Harvard Law Review.

  • Darryl C. De Vivo, MD 

    Dr. Darryl C. De Vivo, MD, is the Sidney Carter Professor of Neurology, Professor of Pediatrics, and Director Emeritus (1979-2000) of the Pediatric Neurology Service at Columbia University Medical Center in New York City. He is also Associate Chairman (Neurology) for Pediatric Neurosciences and Developmental Neurobiology, Founding Director of the Colleen Giblin Research Laboratories for Pediatric Neurology, Director of the Pediatric Neuromuscular Disease Program, and Co-Director of the Columbia University Center for Motor Neuron Biology and Disease.

    Dr. De Vivo was a Neurology Director and President of the American Board of Psychiatry and Neurology (1992-1999), Secretary of the American Academy of Neurology (1993-1997), President of the Child Neurology Society (1989-1991) and a member of the National Advisory Council Neurological Diseases and Stroke at the National Institutes of Health (1997-2001). He completed postgraduate training in medicine, pediatrics, and neurology at the Massachusetts Memorial Hospital, the Massachusetts General Hospital in Boston, the National Institutes of Health in Bethesda, and Washington University School of Medicine in St Louis.

    He has published nearly 400 original articles and reviews, lectures extensively in the U.S. and abroad, serves on several editorial boards and advisory committees, and is an ongoing associate editor for Rudolph’s Textbook of Pediatrics. Publications focused on Spinal Muscular Atrophy include: “Familial adult-onset proximal spinal muscular atrophy in a family with type II hyperlipoproteinemia”, “Neurological and neuromuscular disorders” in The Columbia University College of Physicians and Surgeons Complete Guide to Early Child Care, “The Neuromuscular System” in Rudolph A. M. (Ed.) Textbook of Pediatrics, and “Mitochondrial myopathy simulating spinal muscular atrophy.” Dr. De Vivo was also a co-editor, along with Drs. Jones and Darras, for the textbook Neuromuscular Disorders of Infancy, Childhood, and Adolescence: A Clinician’s Approach, which has become the standard reference in the field.

    Dr. De Vivo did his undergraduate work at Amherst College and received his MD from the University of Virginia School of Medicine.

  • Loren A. Eng 

    Loren Eng serves as the President of the SMA Foundation and is responsible for overseeing all projects and relationships of the Foundation.

    Prior to establishing the Foundation, Ms. Eng worked in investment banking at Morgan Stanley, merchant banking at the Lodestar Group, and as a director of business development at KKR’s media company, K-III.

    Ms. Eng and the work of the SMA Foundation have been featured in national media including ABC NewsBloomberg Markets, ForbesFox News, The New York Times, Nightline, Parents Magazine, and the Today Show. Ms. Eng has testified before Congress on SMA, NIH funding, and biomedical research.

    Ms. Eng received a BA from Wellesley College, and an MBA and an MA in Education from Stanford University.

    Ms. Eng currently serves on the Boards of Columbia University Medical Center, Harvard University Stem Cell Institute, and the Bank Street College of Education.

  • Gerald Fischbach, MD 

    Dr. Fischbach is the Scientific Director of the Simons Foundation Autism Initiative (SFARI). He received his MD in 1965 from Cornell University Medical School and interned at the University of Washington Hospital. Dr. Fischbach began his research career at the NIH, serving from 1966-1973. He subsequently served on the faculty of Harvard Medical School, first as Associate Professor of Pharmacology from 1973-1978 and then as Professor until 1981. From 1981-1990, Dr. Fischbach was the Edison Professor of Neurobiology and Head of the Department of Anatomy and Neurobiology at Washington University School of Medicine. From 1990-1998, he was the Nathan Marsh Pusey Professor of Neurobiology at Harvard Medical School and the Chairman of the Neurobiology Departments of Harvard Medical School and Massachusetts General Hospital. He served as Director of the National Institute of Neurological Disorders and Stroke, National Institutes of Health from 1998-2001.

    Dr. Fischbach is a past-President of the Society of Neuroscience and he now serves on several medical and scientific advisory boards. He is a member of the National Academy of Sciences, the American Academy of Arts and Sciences, and the Institute of Medicine, and he is a fellow of the American Association for the Advancement of Science and a non-resident Fellow of the Salk Institute.

    Throughout his career, Dr. Fischbach has studied the formation and maintenance of synapses with particular interest in the neuromuscular junction. He pioneered the use of cultured neurons and muscle cells to characterize the biochemical, cellular, and electrophysiological mechanisms underlying development and function of the neuromuscular junction. Beginning in the 1970′s, Dr. Fischbach embarked on a search for molecules released by motor neurons that regulate the number of acetylcholine receptors on muscle cells. This work culminated in 1993 with the purification and cloning of a protein called ARIA (for acetylcholine receptor-inducing activity). Because ARIA and other neuregulins act by binding to tyrosine kinase receptors on target cells, Dr. Fischbach’s work was key in demonstrating that synaptic development relies upon biochemical mechanisms that are broadly similar to those that underlie the action of nerve growth factor and other well-known trophic molecules. His current focus is on trophic factors that influence synaptic efficacy and nerve cell survival.

  • Andrew Knight  

    Andrew Knight served as the Chairman of J. Rothschild Capital Management, a subsidiary of the London-based RIT Capital Partners investment firm.

    Prior to joining J. Rothschild Capital Management, Mr. Knight served as the Chairman of News International and Times Newspapers, Deputy Chairman of Home Counties Newspapers, Chief Executive and Editor –in – Chief of the Daily Telegraph and Editor of The Economist.

    Mr. Knight is a Founder and Trustee of the SMA Trust, a UK-based charity funding medical research in Spinal Muscular Atrophy. He is also a Founder of Shipston Home Nursing, a UK-based charity providing hospice-at-home services. At various times, Mr. Knight has served on the Boards of the Imperial College of Science & Technology, the Ballet Rambert, the Mariinsky Theatre Trust, the Royal Opera House, the Victoria and Albert Museum, and the Institute of International Studies at Stanford University and the Center for Economic Policy Research at Stanford University. He currently serves on the Board of the News Corporation.

    Mr. Knight received an M.A. in Modern History from Balliol College at Oxford University.

  • James Gates, Esq. 

    Mr. Gates is a partner of TPG Capital. In 1995, prior to joining TPG, Mr. Gates was Executive Vice President of Starwood Capital Group, L.P., a real estate investment firm based in Greenwich, Connecticut. In this capacity, Mr. Gates was responsible for all capital funding activities at Starwood Capital. From 1984-1992, Mr. Gates worked in the Investment Banking Division of Goldman, Sachs & Co. and served as Executive Director in its London office beginning in 1987. Prior to 1984, Mr. Gates was associated with the Tax Division of Arthur Andersen & Co. in Chicago, specializing in corporate and partnership taxation. Mr. Gates was admitted to the state bars of Illinois and Indiana after graduating with honors from Indiana University School of Law. He received a BS, with distinction, from DePauw University. He currently serves on the Board of Directors of the San Francisco Zoological Society.

  • Jonathan Leff 

    Jonathan Leff is a Managing Director and the Head of Biotech Venture Capital-North America for Warburg Pincus LLC.

    Mr. Leff joined Warburg Pincus, a private equity firm managing approximately $10 billion in private equity assets, in 1996. He is responsible for the firm’s North American investment activities in biotechnology and pharmaceuticals.

    Mr. Leff received an A.B. in Government from Harvard College and an M.B.A. from the Stanford University Graduate School of Business, where he was named a Henry Ford Scholar for graduating with the top academic record out of a class of 360.

    Prior to joining Warburg Pincus, he was a consultant at Oliver, Wyman & Co. and was named a Henry Luce Scholar.

    Mr. Leff is a director of Altus Pharmaceuticals, InterMune, Neurogen Corporation, Rib-X Pharmaceuticals, Sunesis Pharmaceuticals, Transkaryotic Therapies and ZymoGenetics.

  • Helen Meates, Esq. 

    Helen Meates is a Managing Director at Morgan Stanley and is currently the Chief Operating Officer for Global Capital Markets and the co-chair of the Firm’s Capital Commitment Committee.

    Ms. Meates joined Morgan Stanley in 1992 in the Investment Banking Division and spent most of her career in Leveraged Finance, covering the media, transportation, and industrial sectors.
    She received an LLB from Canterbury University in New Zealand in 1986 and an MBA (with Honors) from Columbia Business School in 1992. She practiced law in New Zealand as a criminal defense attorney prior to attending business school.

    She serves on the Board of the Bridgehampton Chamber Music Festival.

  • Stephen Mikita, Esq. 

    Mr. Mikita is an Assistant Attorney General for the State of Utah where he represents the three largest state agencies providing services and protections for individuals with disabilities.

    Born with Spinal Muscular Atrophy, Mr. Mikita serves as a motivational speaker and has appeared on 60 Minutes, Sally Jessy Raphael, Leeza, EXTRA, Court TV, and CNBC; he has spoken in front of audiences as diverse as the Iowa Farm Bureau, the United States Tennis Association, the United States Army, the Tennessee Bar Association, the National Association of Women Judges, and the American Legion.

    Mr. Mikita has achieved numerous milestones for individuals with disabilities as the first admitted student in a wheelchair in the history of Duke University, where he graduated magna cum laude, the first student in a wheelchair at Brigham Young University’s Law School, and the first recipient of the Muscular Dystrophy Association’s National Personal Achievement Award for his advocacy on behalf of people with disabilities. Additionally, Mr. Mikita serves as a Patient Representative to the U.S. Food and Drug Administration’s (FDA) Advisory Committees.

  • Juli Oh, Esq. 

    Juli Oh is a transactional attorney with experience in mergers and acquisitions, securities financings, and technology licensing.

    Ms. Oh has practiced with the law firms of Cravath, Swaine & Moore and Grubman, Indursky & Schindler, P.C. in New York and was a founding lawyer at the San Diego office of Morrison & Foerster LLP.

    Ms. Oh currently serves as the President of the Board of Trustees of the Hanna Fenichel Center for Child Development and on the Board of Governors for Stanford Associates. In addition, she is the San Diego Volunteer Coordinator for the Stanford University Admissions Office. She has also served on the Board of Directors of the Stanford Alumni Association and as a Chair of the Stanford Alumni Committee on Trustee Nominations.

    Ms. Oh received a BA from Stanford University and a JD from Georgetown University Law Center.

  • Simon H. Prisk, Esq. 

    Mr. Simon H. Prisk is a member of the corporate department of The Ruchelman Law Firm, an international tax and corporate law firm. The New York-based firm provides a range of tax planning and corporate legal services for foreign companies operating in the United States. Mr. Prisk concentrates his practice in the mergers and acquisitions area with an emphasis on cross-border transactions.

    Prior to joining The Ruchelman Law Firm, Mr. Prisk was an associate in the corporate department of Squadron, Ellenoff, Plesant, and Sheinfeld, working mainly with media-related clients.

    Mr. Prisk received an LLB from the University of Canterbury in New Zealand and an LLM from Columbia Law School. He practiced law in New Zealand as a Crown Prosecutor prior to attending Columbia Law School.

Directors Emeriti

  • Wendy Belzberg

    Wendy Belzberg is a committed leader in helping to enhance the lives of children with medical and development issues.

    Ms. Belzberg began her professional career at ABC News where she spent more than ten years. A researcher and producer for Peter Jennings, Ted Koppel, Linda Ellerbee and Lynn Sherr, among others, she worked on such notable shows as Nightline and Our World and covered many live-breaking news stories.

    After leaving ABC Ms. Belzberg developed and produced prime-time television series for Hearst Entertainment. She later returned to the world of journalism, becoming an editor and syndicated columnist for The Forward newspaper, the oldest Jewish newspaper in the country.

    As an advocate of early intervention, Ms. Belzberg served as chairman of the board of Lifestart, an early intervention provider, raising awareness and funds for children born with developmental delays.

    Ms. Belzberg graduated cum laude with a Bachelor’s Degree in English Literature from Barnard College. She recently completed her MS in Negotiation and Conflict Resolution at Columbia University and is currently working as a mediator.

  • Susan S. Lin

    Susan Lin joined AEA Investors in September 2006 as a managing director and is based in Hong Kong to help develop the firm’s private equity activities in Asia.

    Prior to joining AEA, Ms. Lin was the chief executive officer of Morgan Stanley Taiwan and served on Morgan Stanley’s Asia executive committee. Ms. Lin was involved in capital markets and mergers and acquisition activities in the Greater China region across financial, technology and general industry sectors. Prior to joining Morgan Stanley, Ms. Lin was a managing director at Goldman Sachs (Asia) L.L.C. with responsibilities for managing the North Asia private wealth management business.

    Ms. Lin received an MS in electrical engineering from Columbia University and a BS from The Cooper Union.