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; Samuel Frank, MD; Jack Griffin; QCSW, DCSW; Elise Kayson, MS, RNC (Director, HSG Coordination Center); Martha Nance, MD; David Oakes, PhD (Director, HSG Biostatistics Center); Mike Poole, MD; Ralf Reilmann, MD, PhD; Julie Stout, BS, MA, PhD; Greg Suter, BA; ex-officio: Shari Kinel, JD (Executive Director/Secretary).
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.
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.
HSG Executive Committee Member (Term 2014-2017)
Chair, The Griffin Foundation, Caregiver
Jack is the founder, president and board chair of the Naples, Florida-based Griffin Foundation. Jack provides generous support to many needed causes, including Huntington disease. Jack is a retired real estate developer and is the former Chair of the Board of Center City Public Charter Schools in Washington, DC. For eight years, Jack was the Chair of the Center City Consortium Board, which was responsible for 14 inner city parochial schools. The Griffin Foundation has provided generous financial support to Center City PCS and the Center City Consortium. Jack served on the Board of Directors of SOME (So Others Might Eat), which serves homeless and low-income individuals in DC. In 2007, Jack received the Humanitarian Award form SOME. Jack was Chair of Victory Housing Inc. for 12 years and a member of the Board of Archbishop Carroll High School. Jack is a graduate of Georgetown University. In 2012, the Griffin Foundation supported the opening of the new Huntington Disease Care, Education and Research Center at MedStar Georgetown University Hospital in Washington, DC.
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.”
Martha Nance, MD
HSG Executive Committee Member (Term 2014-2017)
Medical Director, Struthers Parkinson's Center, Clinical Professor of Neurology, University of Minnesota
Martha is a board certified neurologist and clinical geneticist with special interest in movement disorders such as Parkinson's disease Huntington's disease, hereditary ataxias and spastic paraplegias, and other neurogenetic disorders. She has served as the medical director of the Struthers Parkinson's Center since 2000.
In addition to the care of patients and families with neurologic diseases, she is also involved in clinical research to develop better treatments for Parkinson's disease and Huntington's disease, and interested in education for both patients and medical professionals. Martha is a Clinical Professor of Neurology at the University of Minnesota.
Her other current regional and national professional activities include serving as the Medical Advisor to the Minnesota Chapter of the Huntington's Disease Society of America (1992-), Chair of the Scientific Advisory Board for the Spastic Paraplegia Foundation (2003-), Member of the Advisory Board for the Indiana University HD Roster (2008-), Member of the Scientific Review Committee for the Parkinson Study Group (2009-), and Chair of the NIH NINDS NST-1 Study Section (2011-2013). She serves as a manuscript reviewer for a number of scientific journals, and an ad hoc reviewer for other NIH Study Sections.
David Oakes, PhD
Director, HSG Biostatistics Center (Term 2014-2017)
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 (Term 2014-2017)
Director, Global Health Office of the President, Bill & Melinda Gates Foundation
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, MD, PhD
Executive Committee Member (Term 2014-2017)
Founder, George Huntington Institut, Head, EHDN Huntington Center, University of Munster, Germany
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.
Greg Suter, BA
HSG Executive Committee Member (Term 2014-2017)
Executive Director, Hereditary Neurological Disease Centre
Gregory has dedicated his professional career to the care and treatment of people with Huntington disease and their family members. He currently serves as the Executive Director of the Hereditary Neurological Disease Centre (HNDC), a non-profit, regional facility based in Wichita, Kansas, which specializes in HD. Gregory has been a long-time member of the Huntington Study Group (HSG) and an established HD clinical trial study coordinator for PHAROS, PREDICT HD, PREQUEL, COHORT, 2CARE, CREST E, HORIZON, FIRST HD and ARC HD. He takes the role and responsibilities of a study coordinator very seriously, understanding that it is often the coordinator that not only is responsible for the study components specifically, but also key in the recruitment and retention of subjects in multiple studies at the same time.
Gregory oversees monthly, multi-disciplinary HD Clinics staffed with volunteer professionals, is involved with regional HD Support Group facilitation in four states, and edits the organizational newsletter. He is involved with the counseling component of the HD genetic testing program, having over 27 years of experience with HD genetic testing, and is very involved in providing information to coordinate the collection of post-mortem tissue for research.
Additionally, he serves as an educator to community colleges and universities, provides presentations on HD to long-term care staff and community organizations and for over 20 years has served as a volunteer guardian through the Kansas Guardianship Program.
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.”
last updated: November 2013