The HSG is governed by a constitution and bylaws and an elected Executive Committee which is primarily responsible for the direction and oversight of its research projects and activities. The HSG Executive Committee currently includes: Ira Shoulson, MD (Chair); Steve Hersch, MD, PhD (Co-Chair); Jody Corey-Bloom, MD, PhD, Ray Dorsey, MD, MBA (Director, HSG Coordination Center); Tatiana Foroud, PhD (Chair, HSG Bioethics Review Committee); Blair Leavitt, MD; David Oakes, PhD (Director, HSG Biostatistics Center); Christine O'Neill; Vicki Wheelock, MD; Anne Young, MD, PhD (Chair, HSG Scientific Review Committee); Shari Kinel, JD (Executive Director); Elise Kayson, MS, RNC (HSG Head Project Coordinator).
Ira Shoulson, MDChair, HSG Executive Committee (Term 2008-2014)
Louis C. Lasagna Professor of Experimental Therapeutics and Professor of Neurology, Pharmacology and Medicine at the University of Rochester School of Medicine & Dentistry
April 2009
Ira Shoulson, MD is the Louis C. Lasagna Professor of Experimental Therapeutics and Professor of Neurology, Pharmacology and Medicine at the University of Rochester School of Medicine & Dentistry in Rochester, New York. He received his MD degree (1971) and postdoctoral training in medicine (1971-73) and neurology (1975-77) at the University of Rochester and in experimental therapeutics at the National Institutes of Health (1973-75) and was a Joseph P Kennedy Jr public policy fellow in the US Senate (1990-91). Dr. Shoulson founded the Parkinson Study Group (www.parkinson-study-group.org) in 1985 and the Huntington Study Group (www.huntington-study-group.org) in 1994 -- international academic consortia devoted to research and development of treatments for Parkinson disease, Huntington disease and related neurodegenerative and neurogenetic disorders. He has served as principal investigator of the National Institutes of Health-sponsored trials "Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonism" (DATATOP), the “Prospective Huntington At Risk Observational Study” (PHAROS), and more than 25 other controlled multi-center studies. He is the Director of the Experimental Therapeutics Program at the University of Rochester Department of Neurology, the chair of the executive committee of the Huntington Study Group, a consultant for the Food and Drug Administration, former member of the National Institute of Neurological Disorders and Stroke Council, past-president of the American Society for Experimental NeuroTherapeutics (ASENT), associate editor of Archives of Neurology and an elected member of the Institute of Medicine of the National Academies. He has authored more than 260 scientific reports.
Dr Shoulson contemplates the roots of his second elected term (2008-2014) as chair of the Executive Committee of the Huntington Study Group (HSG). “My interest in Huntington disease dates back to 1974 when I was a clinical associate at the NIH and had the initial opportunity to care for and conduct research involving patients and families affected by this disabling genetic disorder. My formative clinical and research experiences were followed by annual participation on the US-Venezuela HD project (1981-1994) and leadership of several single-center and multi-center clinical trials aimed at slowing the progression of HD. The formation of the Huntington Study Group in 1994 sewed the seeds for the collective effort by hundreds of clinical investigators and laboratory scientists worldwide to develop treatments that make a difference for patients and families affected by Huntington disease. I feel most fortunate to be part of this community of care, research and therapeutic advance.”
Steven M. Hersch, MD, PhD
co-Chair, HSG Executive Committee (Term 2008-2014)
Chair, HSG Credentials Committee, Event Monitoring Committee and Biomarker Working Group
Associate Professor of Neurology at MGH and Harvard Medical School
Director of the Huntington’s disease Center of Excellence and the Laboratory of Neurodegeneration and Neurotherapeutics
April 2009
Dr. Hersch is an Associate Professor of Neurology at MGH and Harvard Medical School and Director of the Huntington’s disease Center of Excellence and the Laboratory of Neurodegeneration and Neurotherapeutics.He is a neuroscientist and clinician with expertise in quantitative neuroanatomy, molecular pharmacology, and experimental neuropathology of neurodegenerative diseases. He is experienced in using immunologic methods to localize receptors and disease related proteins in brain, in quantitative morphology, and in using electron microscopy to analyze neuronal structure, cytology, and synapses. His lab focuses on HD and currently works on basic mechanisms of disease, identification of therapeutic targets, biomarker development, and the use of genetic mouse models to explore neuroprotective therapies, including several treatments now in clinical trials. His lab collaborates with industry to test candidate therapies in HD mice. Dr. Hersch is also a leading HD clinician and clinical investigator. He directs the MGH HD Center of Excellence and served on the national board of trustees for the Huntington’s disease Society of America (HDSA) for many years. He was instrumental in developing the HDSA’s Center of Excellence program and was a member of the Venezuela Project, which conducted prospective clinical and genetic research.
Dr. Hersch is co-chair of the Huntington Study Group (HSG) and chairs its Credentials Committee, Event Monitoring Committee, and Biomarker Working Group. Dr. Hersch is the study PI for the NCCAM-funded phase II and phase III multi-center trials of creatine in HD (CREST-HD, CREST-E), oversees other current creatine studies under his IND for creatine in HD, including the first therapeutic trial in at-risk and premanifest subjects (PRECREST). He was PI of the NINDS-funded multi-center trial of phenylbutyrate (IND#66023) in HD. He is also leading a multidisciplinary group in an NINDS supported effort to develop biomarkers for HD. Dr. Hersch has served as site investigator or steering committee member of numerous clinical trials in HD.
Jody Corey-Bloom, MD, PhDHSG Executive Committee Member (Term 2009 - 2012)
Chair, Publications Committee
Director of the University of California San Diego Medical Center
Huntington's Disease Center of Excellence
April 2010
Dr. Corey-Bloom, is the director of the UCSD Multiple Sclerosis Center and USCD Huntington's Disease Center of Excellence. She serves as an American Academy of Neurology faculty member and has been nominated by her peers four years in a row as one of the top 100 doctors in San Diego. Despite her numerous involvements, Corey-Bloom considers herself to be first and foremost a physician, with a primary duty to her patients and will not let anything interfere with patient care.
Ray Dorsey, MD
Director, HSG Coordination Center (Term 2008-2011)
Assistant Professor of Neurology
University of Rochester School of Medicine and Dentistry
February 2009
Ray Dorsey, MD, MBA is an Assistant Professor of Neurology at the University of Rochester. He received his B.S. in biological sciences from Stanford University and then completed a joint M.D. /M.B.A. program at the University of Pennsylvania. He subsequently worked for two years as a consultant for McKinsey & Company and then completed his internship at Evanston Hospital, neurology residency at the Hospital of the University of Pennsylvania, and fellowship in experimental therapeutics and movement disorders at the University of Rochester.
Dr. Dorsey’s research interests lies in issues at the intersection of medicine and society. He has previously investigated the influence of lifestyle on medical student specialty choice, the financing of biomedical research, and the growing global burden of Parkinson disease. Dr. Dorsey cares for and investigates new interventions for individuals with movement disorders, including Huntington disease, an autosomal dominant, adult-onset neurodegenerative disorder.
Dr. Dorsey is currently conducting the “Life Decisions for Individuals with and at Risk for Huntington Disease” study that aims to assess the influence genetic risk has on important life decisions involving education, reproduction, and insurance behavior. The study will involve a cross-sectional survey of an ongoing, multi-national observational study of individuals with, at risk for, and not at risk for Huntington disease. The study should help inform broader policy debates on the use of genetic tests and their results for more common medical conditions with a known genetic risk factor.
Dr. Dorsey had been appointed as the Director, of the HSG Coordination Center. He states, “I look forward to working with the HSG and the Huntington disease community to advance knowledge and develop interventions to reduce the burden of the disease for patients and their families.”
Tatiana Foroud, PhD
Chair, HSG Bioethics Review Committee (Term 2008-2012)
Director of the Division of Hereditary Genomics
Department of Medical and Molecular Genetics, Indiana University
February 2009
Tatiana Foroud, PhD, is the P. Michael Conneally Professor of Medical and Molecular Genetics and the Director of the Division of Hereditary Genomics. The focus of her research is two fold. First, she is involved in the identification of genes that influence the risk for disease. This research is performed in humans as well as animal models of disease, with a particular focus on neurodegeneration as well as psychiatric disorders. With the rapid advances in technology, this work is performed using large scale genomic technologies, including whole genome association studies and more focused SNP studies within regions of interest. For many of her studies, she leads subject recruitment as well as data management and statistical analysis. The second focus of her research is the identification of biomarkers of early disease manifestation. This work is primarily focused in those disorders in which genes have been identified which influence risk.
Tatiana Foroud has been appointed to chair the HSG Bioethics Review Committee. She states, “I am delighted to work with the HSG in this new committee which will review all protocols submitted to the HSG. Our multidisciplinary committee includes physicians, scientists, lawyers and ethicists and it is our goal to assure that all studies conducted by the HSG will move us forward to better treatments and a cure for HD using safe and ethical approaches”
Blair R. Leavitt MD, CM FRCPC (Neurology)
HSG Executive Committee Member (Term 2008-2011)
Scientist at the Centre for Molecular Medicine and Therapeutics
Associate Professor in the Department of Medical Genetics & the Department of Medicine, Division of Neurology (Associate) at the University of British Columbia
February 2009
Dr. Leavitt is currently a Scientist at the Centre for Molecular Medicine and Therapeutics and an Associate Professor in the Department of Medical Genetics & the Department of Medicine, Division of Neurology (Associate) at the University of British Columbia. Dr. Leavitt completed his MD, CM at McGill, medical internship at Columbia-Presbyterian, neurology residency and fellowship at Cornell and Harvard. A long-standing member of the HSG, HD clinical trial investigator, and neurologist at the UBC HD medical clinic in Vancouver; He also has an ongoing clinical program in neurogenetics with a focus on the hereditary movement disorders specifically in the various forms of ataxia, dystonia and the chorea-form disorders. He is currently involved in clinical studies in HD and other hereditary triplet repeat disorders such as the spinocerebellar ataxias and Friedrich’s ataxia. A laboratory scientist as well as a practicing neurologist, His laboratory is dedicated to developing and testing new treatments for genetic diseases of the brain and spinal cord. Using genetically-modified mouse models of human disease as his primary tool, Dr. Leavitt’s research focuses on developing new therapies for devastating neurodegenerative diseases such as Huntington‘s disease, frontotemporal dementia and amyotrophic lateral sclerosis (Lou Gehrig’s disease). His research also includes major clinical programs searching for clinical biomarkers in HD and identifying new genes that cause hereditary forms of ataxia and mental retardation, both major health problems for adults and children world-wide.
David Oakes, PhD
Director, HSG Biostatistics Center (Term 2008-2011)
Professor of Biostatistics and Statistics at the University of Rochester School of Medicine & Dentistry
February 2009
Dr. Oakes was born and raised near Manchester, England and was educated at Cambridge and London Universities. He received his Ph.D. in Statistics in 1972. After holding faculty positions at Harvard University and the London School of Hygiene and Tropical Medicine he moved to the University of Rochester in 1983. He served as Chair of the Department of Statistics from 1989-1995 and of the Department of Biostatistics from 1995-2002. He has authored or co-authored over 160 scientific papers and two books. Dr Oakes is a Fellow of the American Statistical Association and of the Institute of Mathematical Statistics. He was an Associate Editor for the premier journal Biometrika for 30 years.
Dr. Oakes has been involved in Huntington’s disease (HD) research since 1987, when he collaborated with Dr I. Shoulson in the analysis of the “Baclofen” study. Although this medication, unfortunately like many others since, did not show any benefit over placebo in slowing disease progression, the study contributed to our knowledge of how to perform clinical trials in HD. Dr Oakes was the primary biostatistician for the study which led to FDA approval of tetrabenazine for the treatment of chorea associated with HD. He is currently involved with the Phase III studies of creatine and high dose coenzyme Q as well as with observational studies including PREDICT, PHAROS and COHORT.
“Obviously, all of us who work in HD want to see a cure, and soon. Failing that, we must fall back on an incremental approach. The accumulation of small but definite advances may lead to significant improvements in therapies over time. It is important to avoid blind alleys and to distinguish immediate relief of symptoms, valuable as this can be, from true slowing of disease progression or delay of disease onset”.
Christine O’Neill
HSG Executive Committee Member (Term 2008-2010)
Assistant project Manager at Wake Forest University Health Sciences
April 2009
In her position as assistant project manager at Wake Forest University Health Sciences, Christine acts as the lead study coordinator for multiple Huntington’s Disease research studies. She works with other department investigators, performing study-specific responsibilities.
She joined the Department of Neurology in 2001 and the Huntington Study Group in 2005. That year, she earned the ACRP (Association of Clinical Research Professionals) certification for research coordinating. She sits on the board of the North Carolina chapter of the HDSA and serves as Treasurer, a position she has held since 2006.
Christine earned her A.A. in Business from Union College (Cranford, NJ) and her B.S. in Biology at Wake Forest University (Winston-Salem, NC). Following graduation and prior to coming to WFUBMC, she worked in the hospitality industry and managed Golf and Country Club facilities. From 1997 to 2001, she owned and operated her own restaurant.
Christine looks forward to working on the HSG Executive Committee and plans to ensure that the committee understands some of the challenges and obstacles that face research coordinators.
Christine believes that the successes of the HSG will ultimately lead to breakthroughs in treatment and, one day, a cure for Huntington's Disease.
Vicki Wheelock ,MD
HSG Executive Committee Member (Term 2007-2010)
Health Science Clinical Professor of Neurology at the University of California Davis
April 2009
Dr. Vicki Wheelock is Health Science Clinical Professor of Neurology at UC Davis in Sacramento, CA. A graduate of the University of Michigan for both undergraduate and medical school degrees, Dr. Wheelock completed her residency in Neurology at Los Angeles County - USC Medical Center. Dr. Wheelock joined the faculty at UC Davis in 1996, developing a Movement Disorders program and co-directing a satellite program for the surgical treatment of Parkinson’s disease through Kaiser Permanente. Dr. Wheelock has directed the HDSA Center of Excellence at UC Davis since 2001. She has also been active with HDSA, serving on the Center Program and Education Advisory Committee since 2004, and she received the HDSA Patient and Family Care Award in 2007. A member of the Huntington Study Group since 1997, Dr. Wheelock has served as a site investigator for numerous HSG-sponsored trials, and was elected to the Executive Committee in 2007.
Dr. Wheelock has a strong academic interest in medical student education, and she directs the Clinical Neurosciences course and the Neurology Clerkship at the UC Davis School of Medicine. Most recently Dr. Wheelock has joined Dr. Jan Nolta’s team at the UC Davis Institute for Regenerative Cures to develop a stem cell research program for Huntington’s disease.
“I have been very moved over the years by the courage and strength that patients and families show in their battle with Huntington’s disease, and I’ve learned first-hand that one person can effect an enormous change in our approach to care and research. I am also inspired by HSG leaders and colleagues who show tremendous dedication to understanding HD and developing new treatments. The partnership between families and the HSG is our greatest asset in identifying treatments that will make a difference.”
Anne Buckingham Young, MD, PhD (US)
Chair, HSG Scientific Review Committee (Term 2008-2011)
Julieanne Dorn Professor of Neurology at Harvard Medical School
Chief, Neurology Service at Massachusetts General Hospital
February 2009
Anne Buckingham Young, MD, PhD (US) is the Julieanne Dorn Professor of Neurology at Harvard Medical School and the Chief, Neurology Service at Massachusetts General Hospital is a researcher and clinician whose work at the bench and bedside have concentrated on neurotransmitter systems in the basal ganglia and their role in Huntington's, Alzheimer's and Parkinson's diseases. Dr. Young holds membership in both the Institute of Medicine and the American Academy of Arts and Sciences.
Dr. Young is a Phi Beta Kappa, summa cum laude graduate of Vassar College who completed her medical studies at Johns Hopkins in 1973. She received a Ph.D. in Pharmacology from Johns Hopkins in 1974, and then completed residency training in neurology at the University of California, San Francisco. After residency, she joined the neurology faculty at the University of Michigan where she advanced to Professor in 1985. In 1991, she was recruited to the Massachusetts General Hospital as Chief of the Neurology Service and Julieanne Dorn Professor of Neurology at Harvard Medical School.
Dr. Young provided some of the first evidence that glutamic acid is a neurotransmitter. Subsequently, she and her colleagues identified glutamate as a transmitter of corticostriatal and corticospinal tracts. Her laboratory first described techniques to measure subtypes of glutamate receptors autoradiographically and went on to demonstrate receptor alterations in Huntington's and Alzheimer's disease. Dr. Young, along with her late husband, John B. Penney, Jr., MD first conceptualized a model of the functional anatomy of the basal ganglia that has been termed the ‘classical’ model.
Dr. Young's current research work includes elucidating cellular and systems mechanisms underlying the pathophysiology of neurodegenerative diseases such as Huntington's disease and Parkinson's disease. She is spearheading an effort at MGH to accelerate the discovery of effective therapeutics for neurodegenerative diseases.
Dr. Young has served on the editorial boards of numerous biomedical journals and she has been the recipient of many awards and honors for her work. She is a member of the Scientific Advisory Boards of several voluntary organizations. She is the past President of the American Neurological Association and the Society for Neuroscience.
Dr. Young has been reappointed to chair the HSG Scientific Review Committee. She states “it is an extraordinary time in basic and translational research on Huntington’s disease and the future is promising for finding new and effective therapies for manifest and premanifest disease. I look forward to contributing to the goals of the HSG and helping accelerate the search for a cure.”
February 2009
Shari Kinel is the Executive Director to the Huntington Study Group. As Executive Director, she will oversee governance, grants, contracts and selected projects of the HSG and provide legal counsel and assistance for critical programs. Shari is an attorney who has over 15 years of diverse legal experience in a variety of industries including government, financial services, and pharmaceuticals.
Shari started her career at the US Department of Labor and the US Department of Justice in Washington, DC. She then joined Chase Manhattan’s Bank’s legal team in 1992. Since 1998, Shari has been active in her own practice representing organizations in business matters involving regulatory compliance, contracts, and corporate policies and procedures. She also spent time on the legal staff at Celltech Pharmaceuticals. Shari is a graduate of Brandeis University and she earned a law degree from SUNY Buffalo. She is admitted to practice law in both New York State and the District of Columbia. A native of Rochester, Shari has been an active member and advisor for several not-for-profit organizations in the community where she lives with her husband and twelve year old twins.
Shari is excited about working with the HSG and says, “I am honored to be a part of such an innovative team and an organization that has such a strong and positive mission. I look forward to working with the extended HSG team and to helping the organization continue to accomplish its objectives.”
Elise Kayson, MS, RNC
HSG Head Study Coordinator (Term 2008-2011)
Senior Research Associate
February 2009
Elise Kayson currently serves as the Head Study Coordinator for the Huntington Study Group (HSG) and is a member of the HSG Executive Committee. Her role in this position includes oversight of HSG studies and implementation of educational programs for the HSG site investigators and coordinators. The main emphasis of the HSG educational program has been on initiation and implementation of clinical trials efficiently and effectively.
Elise is on faculty of the Department of Neurology and the School of Nursing at the University of
Rochester.She has her Masters in Nursing from the University of Rochester School of Nursing and is a licensed Nurse Practitioner with an active collaborative practice of Huntington and Parkinson disease patients.
Elise has more than 20 years experience in pharmaceutical based research both commercial and academic. Prior to working at the university she was employed by Fisons Corporation. Elise is also the Director of Project Coordination for the Clinical Trials Coordination Center (CTCC) at the University of Rochester with a primary interest in clinical trial design, informed consent process and data collection tools for HD and PD studies. Elise has served as the Senior Project Manager for numerous clinical studies most notably PHAROS and PREDICT-HD the first observational studies in individuals at-risk for HD. She has also participated on the steering committees for a number of Huntington disease trials.
Elise is looking forward to working with the HSG sites to enhance their knowledge of implementation of clinical trials in HD. She notes that, “offering courses to research site personnel will provide them with the opportunity to think through processes, plan early and be able to hit the ground running when clinical trials are available for patients and families.”
last updated: June 2010