HSG Board

HSG Board

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.

 

Andrew Feigin, MD
Chair, HSG

Andrew Feigin, a professor of Neurology at NYU Langone Health and co-director of the Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders, has been involved in HD research since his participation in the Venezuela Collaborative Research Group, which isolated the HD gene 25 years ago. Feigin’s independent research has focused on the development of novel imaging biomarkers that could be used as outcome measures for HD clinical trials. He has served as a member of HSG’s Executive Committee, chair of HSG’s Program Committee for the Peter Como HD Clinical Research Symposium for five years, and currently chairs HSG’s Clinical Research Advisory Committee. Feigin is the principal investigator (PI) of the SIGNAL trial and the co-PI of LEGATO-HD, as well as serving as a site PI on numerous other HD trials.


Elise Kayson, MS, RN, ANP
Co-Chair, HSG

Elise Kayson, an Assistant Professor of Nursing at the University of Rochester and director of Clinical and Strategic Initiatives at the Center for Health + Technology (CHeT) has been involved in the care of Huntington disease (HD) patients and research since the inception of the Huntington Study Group (HSG). She played a key role in the pivotal trials that resulted in the only two FDA-approved drugs for HD. Kayson is currently serving in multiple leadership positions in the HSG, including member of the Executive Committee, co-chair of the HSG Credentials Committee, and co-chair of the HSG Educational Committee. In 2016, she was recognized with a Lifetime Achievement Award from HSG. As a director of clinical project management and time spent in industry, Kayson has led and managed over 50 clinical trials operationally and administratively for Huntington disease, Parkinson disease, and other rare disorders. Kayson is well versed in clinical trial design, organization and conduct, and regulatory management. She has insights into and appreciation of HD clinical trials from the perspective of study participants, coordinators, investigators, CRO functions, and sponsors.


Julie_Stout_371314-2Julie Stout, BS, MA, PhD
Treasurer, HSG

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 Kinel, JD
Secretary, HSG

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.


Joni SteinmanJoni Steinman
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.