The Board shall be comprised of the officers in accordance with HSG’s Bylaws. The Chair and the Co-Chair of HSG shall also serve as the Chair and Co-Chair of the Executive Committee. The Chair and Co-Chair of the Executive Committee shall be elected by a majority vote by the voting members of HSG. The Chair and Co-Chair shall also appoint a Treasurer and Secretary to serve as members of the Executive Committee.
Ray Dorsey, MD, MBA
David M. Levy 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)
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.
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.
Shari has been the Executive Director to the Huntington Study Group since 2009. She is a graduate of Brandeis University and she earned a law degree from SUNY Buffalo. Shari manages the overall operations of HSG and oversees governance, grants, contracts, and key objectives and strategies of HSG. Since joining HSG, Shari has served on HD clinical trial steering committees, HD trial project teams and has dedicated a lot of her time working with HD care and community groups.
Shari is an attorney who 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 and also spent time on the legal staff at Celltech Pharmaceuticals. Shari also had her own practice representing organizations in business matters involving regulatory compliance, contracts, and corporate policies and procedures.
Board Member, HSG
Joni M. Steinman brings 35 years of health care management consulting experience to advancing the goals of the HSG. As the co-founder and managing principal of AUSMS Healthcare Consultants, Ms Steinman served the U.S. health care industry, advising policy makers, administrators and practitioners on strategic, facility, organizational and business planning and development matters, including performance improvement initiatives for hospitals, surgery providers and practitioners, hospice and home care agencies, medical groups and governmental agencies, regarding the development of many facets of acute, sub-acute, ambulatory, home and long-term care. In 2012, after completing several consulting engagements in Toronto, Canada, Ms. Steinman affiliated with Strategic Interests, LLC, a Rochester, NY-based firm dedicated to guiding health care organizations nationwide to grow through improved performance and the innovative use of information technology and business intelligence.
With educational achievements in both political and medical sociology (Brandeis University, cum laude) and social work administration (San Diego State University), Ms. Steinman has devoted her career, as AUSMS’ motto indicates, to guiding clients and colleagues alike ‘From Ideas to Results’ in health care and human services.
Ms. Steinman has always given back to her communities through voluntarism and philanthropy. Examples of her commitment including serving as President of, respectively, the Health Systems Agency of San Diego and Imperial Counties, the Jewish National Fund’s San Diego Region and San Diego Women in Health Administration. Today, in addition to her new commitment to HSG, she is a member of the Rochester Women’s Giving Circle, a community of philanthropic women who combine their financial strength to support area women and girls on their journey to economic self-sufficiency.