About Us:

Board of Directors

SMA Foundation

Dinakar Singh
Chairman of the Board

Dinakar Singh is the Founding Partner of TPG-Axon Capital, a leading global investment firm. With 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.

Mr. Singh is a graduate of Yale University. He serves as Chairman of the Board for the SMA Foundation, providing governance leadership and strategic support.

David M. Weil
Treasurer

David M. Weil is the President and Chief Operating Officer of TPG-Axon Capital, a leading global investment firm. With 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, Global Treasurer, Head of 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 his BA from Yale University and his JD from Yale Law School. Mr. Weil serves as Treasurer on the Foundation’s board and is head of the Audit Committee, providing legal advice and overseeing the management and reporting of the organization’s finances.

Douglas G. Cole, MD

Douglas Cole is a General Partner at Flagship Ventures. Dr. Cole joined Flagship in 2001, where he has led 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 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, Dr. Cole 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.

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. Dr. Cole holds an AB magna cum laude in English from Dartmouth College and an MD from the University of Pennsylvania School of Medicine. He assists the SMA Foundation with drug discovery strategy and Foundation management.

Loren A. Eng

Loren Eng serves as the President of the SMA Foundation and is responsible for overseeing all projects and relationships at the Foundation. Prior to establishing the Foundation in 2003, Ms. Eng worked in investment banking at Morgan Stanley, in 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 News, Bloomberg Markets, Forbes, Fox 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 currently serves on the Boards of Columbia University Medical Center, Harvard University Stem Cell Institute, and the Bank Street College of Education. She received a BA from Wellesley College, and an MBA as well as an MA in Education from Stanford University.

Gerald Fischbach, MD

Gerald Fischbach is Chief Scientist and Fellow of the Simons Foundation. He is a former director of the National Institute of Neurological Disorders and Stroke (NINDS), the leading federal agency supporting research on the brain and nervous system. Dr. Fischbach received his MD in 1965 from Cornell University Medical School and interned at the University of Washington Hospital. He 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 for 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 1970s, 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 (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.

Dr. Fischbach sits on the Foundation’s board as a key scientific strategist.

Andrew Knight

Andrew Knight is Chairman of Times Newspapers Holdings Limited (London).

Mr. Knight was Editor of The Economist from 1974-1986. He was CEO and Editor in Chief of The Daily Telegraph from 1986-1989. He was Chairman of News International from 1990-1995, and served as an Independent Director of News Corporation (serving through 2012 as Chairman of the Compensation Committee and a member of the Audit Committee).

Additional posts held by Mr Knight include: Chairman of J Rothschild Capital Management, Director of Rothschild Investment Trust Capital Partners, Director of Templeton Emerging Markets Investment Trust, Deputy Chairman of Home Counties Newspapers, Chairman of Ballet Rambert, Chatham House Council Member, Steering Committee Member of Bilderberg Meetings, Trustee of the V&A, Governor of Imperial College of Science and Technology, Chairman of Harlech Scholars’ Trust, Chairman of Jerwood Charity, Founding Chairman of Shipston Home Nursing, and anAdvisory Council Member of the Center for Economic and Policy Research as well as the Institute of International Studies, both at Stanford University

Mr. Knight is on the Board of Hubcreate. He is founding Trustee of The SMA Trust, a Governor and past Member of the Council of Management of the Ditchley Foundation, Trustee of the Mariinsky Theatre Trust, and Trustee of the Centre for Policy Studies. He helps serve the SMA Foundation through media strategy and communication with European patients.

Story Landis, PhD

Story Landis is a former director of the National Institute of Neurological Disorders and Stroke (NINDS), the leading federal agency supporting research on the brain and nervous system. She was director of the institute between September 2003 and October 2014. Dr. Landis received her undergraduate degree from Wellesley College and her Ph.D. from Harvard University. After postdoctoral work at Harvard University, she served on the faculty of the Department of Neurobiology there. In 1985, she joined the faculty of Case Western Reserve University School of Medicine, where she created the Department of Neurosciences that, under her leadership, achieved an international reputation for excellence.

Dr. Landis joined the National Institute of Neurological Disorders and Stroke in 1995 as Scientific Director and worked to re-engineer the lnstitute’s intramural research program, and fostered the growth of a trans-NIH neuroscience community that led to the construction of the Porter Neuroscience Building on the NIH campus. From 2003 to 2014, Dr. Landis served as the Director of NINDS, overseeing an annual budget of $1.6 billion that supported research by investigators in its intramural program and public and private institutions across the country. Together with NIMH and NIA directors, she co-chaired the NIH Blueprint for Neuroscience Research, a roadmap-like effort to support trans-NIH activities in the brain sciences. In 2013 and 2014, she and Dr. Tom Insel played a key role in launching the NIH BRAIN Initiative.

Dr. Landis currently serves on the Scientific Advisory Boards of the Allen Institute for Brain Science, the Vollum Institute at Oregon Health Sciences University and the Neurological Research Institute at Baylor College of Medicine, and on the Scientific Review Board of the Howard Hughes Medical Institute. Throughout her research career, Dr. Landis made fundamental contributions to the understanding of how functionally appropriate synapses form during development and the role of neurotrophins in the peripheral nervous system. She is an elected fellow of the Institute of Medicine, the Academy of Arts and Sciences and the American Association for the Advancement of Science and in 2002 was elected President of the Society for Neuroscience.

Dr. Landis joined the Foundation’s Board of Directors in early 2015, and provides scientific strategic direction.

Jonathan S. Leff

Jonathan Leff is a Partner of healthcare investment firm Deerfield Management and Chairman of the Deerfield Institute. Mr. Leff focuses on venture capital investments in biotechnology. Prior to joining Deerfield in 2013, for more than 16 years Mr. Leff was with Warburg Pincus, where he led the firm’s investment efforts in biotechnology and pharmaceuticals. Mr. Leff has also been active in public policy discussions related to healthcare and medical innovation. He serves as a member of the Executive Committee of the Board of the National Venture Capital Association (NVCA) and leads NVCA’s life sciences industry efforts as Chair of NVCA’s Medical Innovation and Competitiveness Coalition (NVCA-MedIC). He also serves on the Emerging Companies Section Board of the Biotechnology Industry Organization.

Mr. Leff received his AB from Harvard University, and earned his MBA from Stanford University Graduate School of Business. In addition to the Spinal Muscular Atrophy Foundation, Mr. Leff is a member of several not-for-profit Boards, including Friends of Cancer Research, and the Columbia University Medical Center Board of Advisors. He assists the SMA Foundation with drug discovery strategy and Foundation management.

Helen Meates

Helen Meates is the Chief Financial Officer of PJT Partners, an independent financial advisory firm based in New York. She joined the firm in January 2015. Ms. Meates was previously a Managing Director at Morgan Stanley, and retired in June 2014 after 22 years at the firm.

Ms. Meates joined Morgan Stanley in 1992 in the Investment Banking Division and spent most of her career in Global Capital Markets, including nine years in Leveraged Finance. In 2011 she was appointed as Deputy Head of Global Capital Markets and Co-Chair of the Firm’s Capital Commitment Committee. In November 2013 she assumed the role of Global Chief Operating Officer for the Research Division and was appointed to the Institutional Securities Operating Committee. She also served on the Firm’s Institutional Securities Risk Committee, Micro-finance Advisory Board and Diversity Committee.

Ms. Meates 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 prior to attending business school. Ms. Meates also serves on the board of the Bridgehampton Chamber Music Festival.

Stephen Mikita

Stephen Mikita has been a Utah Assistant Attorney General for 33 years, representing the three largest state agencies providing services and protections for individuals with disabilities. As one of the oldest survivors of spinal muscular atrophy, Mr. Mikita has been uniquely positioned to advocate for the patient perspective at every stage of drug development. He is the FDA’s Patient Representative for SMA, and has also served on Advisory Committees for two therapies unrelated to SMA. Mr. Mikita was a Drug Information Association (DIA) Patient Fellow in 2013. He was appointed as a patient representative to the Clinical Trials Transformation Initiative’s (CTTI) Steering Committee, where he worked on various projects. In addition, he is a patient representative for Columbia University Medical Center’s NeuroNEXT program.

Mr. Mikita was the first freshman in a wheelchair at Duke University where he graduated magna cum laude, double majoring in Political Science and Religion. Mr. Mikita was a law clerk for the United States Senate Judiciary Committee and was the first wheelchair graduate at Brigham Young University Law School. He was an Adjunct Professor of Law at both Brigham Young University and the University of Utah. Mr. Mikita was featured on 60 Minutes, and was interviewed by the late Mike Wallace on the topic of physician assisted suicide. He has been a wonderful asset to the SMA Foundation, advising on legal and patient matters.

Juli Oh

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. She provides legal guidance to the SMA Foundation, and serves on the Foundation’s Audit Committee.

Simon H. Prisk

Simon H. Prisk is a Partner at Ruchelman P.L.L.C., 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 Ruchelman P.L.L.C., 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. Mr. Prisk provides legal guidance to the SMA Foundation and serves on the Foundation’s Audit Committee.

 

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 has covered many live-breaking news stories.

After leaving ABC News, 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 for 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.

Darryl C. De Vivo, MD

Darryl C. De Vivo 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 completed his undergraduate work at Amherst College and received his MD from the University of Virginia, School of Medicine.

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., responsible for managing the North Asia private wealth management business.