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: Ray Dorsey, MD (Chair/President); Blair Leavitt, MD, CM, FRCP(C) (Co-Chair/Vice President); Karen Anderson, MD; Tatiana Foroud, PhD (Chair, HSG Bioethics Review Committee); Samuel Frank, MD; Jack Griffin; Bonnie Hennig, MSW, LCSW, QCSW, DCSW; David Oakes, PhD (Director, HSG Biostatistics Center); Mike Poole, MD; Ralf Reilmann, PhD; Julie Stout, BS, MA, PhD; Claudia Testa, MD, PhD; Anne Young, MD, PhD (Chair, HSG Scientific Review Committee); Shari Kinel, JD (Executive Director/Secretary); Elise Kayson, MS, RNC (Director, HSG Coordination Center).
Ray Dorsey, MD, MBA
Chair, HSG Executive Committee/President, HSG Ltd. (Term 2014-2018)
Louis C. Lasagna Professor of Experimental Therapeutics and Professor of Neurology, Pharmacology and Medicine at the University of Rochester School of Medicine & Dentistry
Ray is a Professor of Neurology and Director of the Center for Human Experimental Therapeutics and Center for Health and Technology at the University of Rochester Medical Center. Ray is helping investigate new treatments for movement disorders and improve the way care is delivered for individuals with Parkinson disease and other neurological disorders. Using simple web-based video conferencing, he and his colleagues are seeking to provide care to anyone anywhere. As an academic neurologist, he is pleased to have devoted much of his professional activities and energies to Huntington disease and the Huntington Study Group. Since joining the HSG, he has had the opportunity to work as a site investigator, serve on the steering committee for five clinical studies and trials, and lead the recently completed phase II clinical trial of PBT2 (Reach2HD) study. He has also served on the HSG Executive Committee since 2008 and previously served as its Treasurer. Two years ago, he started HD Insights, a global research periodical produced by the Huntington Study Group, which now reaches over 1500 HD researchers and clinicians around the world. As a clinician, he has helped care for individuals with Huntington disease and with Dr. Kevin Biglan, has explored using technology to increase access to care for those affected by the disease.
Blair Leavitt, MD, CM, FRCP(C)
co-Chair, HSG Executive Committee/Vice President, HSG Ltd. (Term 2014-2018)
Professor, Department of Medical Genetics, and Division of Neurology, Department of Medicine (Associate), The University of British Columbia
Senior Scientist, Centre for Molecular Medicine and Therapeutics (CMMT)
Blair is the Co-Chair of the Huntington Study Group, a Senior Scientist at the Centre for Molecular Medicine and Therapeutics, and a Professor in the Department of Medical Genetics at the University of British Columbia. Blair is a long-standing member of the HSG, the EHDN, and an established HD clinical trial investigator. As a consultant neurologist at the UBC Centre for HD in Vancouver, he has an ongoing clinical program in neurogenetics with a focus on hereditary movement disorders. As a neuroscientist and physician, his time (both clinical and basic research) is dedicated to developing new treatments for genetic brain disorders such as Huntington's disease, amyotrophic lateral sclerosis, and frontotemporal dementia. Blair is currently the Director of the CMMT Transgenic Animal Facility, the Co-Director of the UBC Neurogenetics Clinic, Director of Research at the UBC Centre for Huntington's disease and a founding Editor-in-Chief of The Journal of Huntington's Disease.
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.
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”.
Mike Poole, MD
Executive Committee Member
Mike is the Director of the Global Health Office of the President at the Bill & Melinda Gates Foundation. Mike is responsible for coordinating and evaluating new investment opportunities in R&D technologies, and oversees Global Health leadership engagements and strategic operations. Prior to joining the foundation in 2014, Mike served as vice president and Head of Neuroscience Innovative Medicines at AstraZeneca, where he managed drug discovery and development projects in collaboration with a network of academic and industry partners. Prior to joining AstraZeneca, Mike was chief medical officer for Link Medicine, and previously served as chief medical officer for Hypnion as well. He has also held a number of international leadership roles at Pfizer and Wyeth. Mike earned his medical degree at the University of California, San Diego. He trained in internal medicine at Strong Memorial Hospital, University of Rochester and in neurology at the University of Michigan Medical School.
Ralf Reilmann, PhD
Executive Committee Member
Ralf is the founder of the George-Huntington-Institute and chair of the Huntington Unit at the Department of Neurology, University of Muenster, Germany. Ralf established one of the largest cohorts of symptomatic and premanifest HD gene carriers globally (currently ~500 participants in the REGISTRY observational study). Within the European Huntington’s Disease Network (EHDN – www.euro-hd.net), he served as elected member of the Executive Committee, Chair of the “Neuroprotective Therapy Working Group”, member of the "Clinical Trials Task Force", and as Coordinating Global Principle Investigator of randomized multicenter multinational clinical trials. Ralf also serves as Chair of the “Motor Phenotype Working Group” of EHDN and established the EHDN UHDRS-TMS (Unified Huntington's Disease Rating Scale - Total Motor Score) online certification for improved standardization of motor ratings, which is now required for all observational and clinical trials in HD. His main line of research focuses on the development of objective and quantitative motor (“Q-Motor”) outcome measures for clinical trials. Ralf trained at the University of Muenster (Germany) and at Columbia University (New York) and studied in Muenster, Paris, London, and New York.
Julie Stout, BS, MA, PhD
HSG Executive Committee Member/Treasurer, HSG Ltd. (Term 2014-2018)
Director of the Clinical and Cognitive Neuroscience Laboratory at the School of Psychology and Psychiatry, Monash University
Julie is the Director of the Clinical and Cognitive Neuroscience Laboratory at the School of Psychology and Psychiatry at Monash University. Julie focuses on Huntington disease (HD) and on additive behavior, aiming to develop and adapt cutting edge cognitive science tools for clinical settings. Julie teaches in the clinical neuropsychology doctoral program and undergraduate psychology and behavioral neuroscience topics. Julie is trained as a clinical psychologist and neuropsychologist. She is an expert in the field of sensitive cognitive assessment in clinical populations, seeks to explain why patients present differently. Currently collaborating and leading in three international and Monash-based studies of HD, Julie and her team at the Clinical and Cognitive Neuroscience Laboratory seek to detect and map how gradual changes in clinical markers appear and use this information to provide recommendations on clinical trial designs. Julie’s work on HD (and also on Parkinson’s disease) has evolved into research with drug abusers, gamblers, and incarcerated offenders. The main aim of the HD work is sensitive measurement of cognition and early detection of disease signs as well as cognitive measurement for clinical trials. The main aim of the work in addiction is to understand why people make impulsive, and often very risky, decisions. Ultimately, she believes that by identifying the underlying neurological and cognitive processes, it will become possible to target treatments more squarely at the underlying causes of these behavior disorders. Julie received her Master of Arts and Doctor of Philosophy (both in Psychology) at Duke University.
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."