The HSG is governed by a constitution and bylaws and an elected Executive Committee, which governs according to the constitution and bylaws, and 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); Karen Anderson, MD; Ray Dorsey, MD, MBA (Director, HSG Coordination Center); Tatiana Foroud, PhD (Chair, HSG Bioethics Review Committee); Samuel Frank, MD; Bonnie Hennig, MSW, LCSW, QCSW, DCSW; David Oakes, PhD (Director, HSG Biostatistics Center); Claudia Testa, MD, PhD; Anne Young, MD, PhD (Chair, HSG Scientific Review Committee); Shari Kinel, JD (Executive Director); Elise Kayson, MS, RNC (HSG Head Project Coordinator).
Ira Shoulson, MD
Chair, 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
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 sowed 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
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.
Karen Anderson, MD
HSG Executive Committee Member (Term 2012-2015)
Associate Professor of Psychiatry and Neurology, Georgetown University
Karen E. Anderson, MD, is an Associate Professor of Psychiatry & Neurology and the newly appointed Director of the Huntington Disease Care, Education and Research Center (HDCERC), a joint endeavor of Georgetown University Medical Center (GUMC) and MedStar Georgetown University Hospital. As Director, she leads a multidisciplinary team devoted to HD care, the first in the DC Metro area. She previously founded the University of Maryland Huntington's Disease Clinic, and served as its director for 12 years.
Dr. Anderson’s research interests include behavioral symptoms in patients with Huntington’s Disease (HD) and other movement disorders such as Parkinson's disease. She serves on the executive committee of the Huntington Study Group (HSG) and the Scientific Planning Committee of the ENROLL Huntington's Disease study. Her work includes collaboration with the European HD Network on global efforts to study and treat emotional symptoms in HD. She also had a lead role in development of expert consensus treatment guidelines for emotional symptoms in people with HD. She conducts clinical trials for new drug therapies in HD and is trained in programming for deep brain stimulation treatment for movement disorders.
Dr. Anderson earned her undergraduate and medical degrees from University of Chicago. She completed her internship at Columbia Presbyterian Medical Center and her residency and postdoctoral research training in psychiatry at Columbia University and the New York State Psychiatric Institute, where she began her work in HD. She has subspecialty certification in neuropsychiatry and behavioral neurology.
Ray Dorsey, MD
Director, HSG Coordination Center (Term 2008-2011)
Assoiciate Professor of Neurology at Johns Hopkins University
Ray Dorsey, MD, MBA is an Associate Professor of Neurology at Johns Hopkins University. 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 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 2012-2016)
Director of the Division of Hereditary Genomics
Department of Medical and Molecular Genetics, Indiana University
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 twofold. 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”
Samuel Frank, MD
HSG Executive Committee Member (Term 2013-2016)
Associate Professor of Neurology, Boston University of Medical Center
Dr. Samuel Frank is Associate Professor of Neurology and co-Director of Neurology Resident Education at Boston University. Since completing his fellowship at the University of Rochester, he has been involved in many local and Huntington Study Group clinical trials and observational studies, including as the principal investigator for two HSG studies First-HD and ARC-HD. Through 2014, Dr. Frank will serve as a member of the HDSA national board of trustees. He has an active HD clinic at Boston Medical Center and serves as the inpatient neurology consultant for the specialized HD service at Tewksbury State Hospital. He also sees patients through the regional Veterans Administration hospital. In the past, Dr. Frank has been a member of the FDA’s Peripheral and Central Nervous System Advisory Committee and on the American Academy of Neurology Patient Safety Subcommittee.
Bonnie Hennig, MSW, LCSW, QCSW, DCSW
HSG Executive Committee Member (Term 2012-2014)
Clinical Therapist, University of Connecticut Health Center Huntington's Disease Program
Ms. Hennig is nationally and internationally recognized as an expert in the field of talking to children about HD. She has written a book called, “Talking to Kids About Huntington’s Disease: a book for people who know children with HD in their family”. The book has been translated into five languages and she has lectured extensively on this topic in the United States and abroad.
In September 2000, Ms. Hennig initiated and continues to facilitate an ongoing, monthly caregivers support group. She provides in-services on Huntington’s Disease to nursing facilities and home care agencies. She has also provided lectures on Huntington’s Disease to licensed practical nurses, registered nurses and nurse practitioners.
Ms. Hennig has been a lead coordinator on numerous studies including the HSG supported CREST-E and Reach2HD clinical trials. She has developed substantial expertise in working with an IRB fully accredited by the Association for the Accreditation of Human Research Protection Programs (AAHRPP).
Ms. Hennig has been a member of the HSG Educational Committee for three years and presented, “Approaching COHORT Subject About Involving Kids in Research” at the 2008 HSG meeting, “One Site’s Experience with an Internal IRB Audit” at the 2011 HSG Meeting and “Practical Tips and the Impact of Obtaining Disability Benefits” at the 2012 HSG Meeting. She has been an active member of the HSG Project AWARE committee since its inception in 2010. The aim of Project AWARE is to improve patient and family awareness, willingness and ability to participate in clinical research.
Ms. Hennig serves as a liaison for the local HDSA affiliate in Connecticut and is an advisor to the Huntington’s Disease Youth Organization (HDYO). She is a founding member of Aim for a Cure, a local Connecticut organization whose goal is to raise money for HD research and awareness. Ms. Hennig is a member of the European Huntington Disease Network (EHDN) and the National Association of Social Workers (NASW).
David Oakes, PhD
Director, HSG Biostatistics Center (Term 2011-2014)
Professor of Biostatistics and Statistics at the University of Rochester School of Medicine & Dentistry
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”.
Claudia Testa, MD, PhD
HSG Executive Committee Member (Term 2011-2014)
Associate Professor, VCU Department of Neurology, Huntington Disease Program Director, VCU Parkinson's and Movement Disorders Center, Joan Massey Chair in Clinical Parkinson's Disease
Dr. Testa is an Associate Professor of Neurology and the Joan Massey Chair of Clinical Parkinson Disease at Virginia Commonwealth University (VCU), and part of the new VCU Parkinson's and Movement Disorders Center. The Center aims to integrate research, clinical care, and education and outreach missions into an interdisciplinary.
Dr. Testa holds a BS in Biophysics from Johns Hopkins University (1987). She grew her undergraduate research interests during a Churchill Scholar year at Cambridge University working on parallel processing computer networks. She then trained at University of Michigan for her MD and PhD (Neuroscience, 1996). Her graduate work was in the lab of Dr. Anne B. Young and Dr. John B Penney, Jr., in both Michigan and Boston; working in this group introduced her to research in Huntington disease. After completing her MD and PhD degrees, she returned to Boston for internship at Beth Israel Hospital, then neurology residency in the Partners program at Massachusetts General Hospital and Brigham and Women's Hospital, where she was a chief resident her final year. She moved to Emory University for a movement disorders fellowship and basic research with Dr. Timothy Greenamyre. The Emory HD Center of Excellence was an important part of her growth as a clinician and scientist. Over her time at Emory she transitioned from fellow to faculty to medical director of the HD Center, with involvement in several HSG studies. More recently, to enhance her skills in human disease based research she completed a Masters in Clinical and Translational Research (2012) while a faculty member at Emory University. She moved to VCU in 2011, where she is excited to lead a new Huntington disease program. Her current research interests are in genetic causes and risks for essential tremor, Huntington disease pre-motor physiology changes, and Huntington disease observational and treatment trials.
She says: "It didn't take me long as a physician-scientist to realize that patients are my best teachers. My job is connecting that clinical experience with research to make progress understanding and treating movement disorders. The HSG, a group with strong ties to both the HD community and researchers, can uniquely contribute to make that progress happen."
Anne Buckingham Young, MD, PhD
Chair, HSG Scientific Review Committee (Term 2012-2016)
Julieanne Dorn Professor of Neurology at Harvard Medical School
Chief, Neurology Service at Massachusetts General Hospital
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.”
Shari Kinel, JD
HSG Executive Director (Term 2011-2014)
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 2011-2014)
Senior Research Associate
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: November 2013