Meet the HSG Executive Committee

Andrew Feigin, MD
Chair, Huntington Study Group

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, Huntington Study Group

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.
Shari Kinel, JD

Shari Kinel is the CEO of the HSG where she oversees and manages the HSG non-profit entity that defines, plans, and leads implementation of strategic initiatives to serve the needs of Families, Members, and Sponsors, and oversees the HSG Clinical Research, Inc – a wholly owned for-profit subsidiary that conducts clinical trials. Shari is responsible for the overall operations of both organizations and engages and aligns stakeholders throughout the HD world to collaborate on meaningful initiatives. Shari joined the HSG in 2009 and led the formation of the HSG as a standalone not-for-profit 501(c) organization. Shari is an attorney who started her career at the government in Washington, DC and then transitioned to financial services until she found her passion working towards finding treatments for people affected by HD.
Christopher Beck, PhD
Executive Committee Member and Director of Biostatistics

Chris is an Associate Professor of Biostatistics and Orthopaedics at the University of Rochester Medical Center. As a member of several national and international collaborative groups conducting research in areas including Huntington disease, Parkinson disease, Batten disease, bone repair, rheumatoid arthritis, and cardiomyopathy, Chris has extensive experience and a great deal of expertise in the biostatistical aspects of basic and clinical research. He joined HSG in 2005 while serving as a biostatistican for the TREND-HD study, and he has continued in that role for a total of eight HSG studies. Chris is honored to become only the second Director of Biostatistics in the history of HSG.
Joji Decolongon, MSc, CCRP
Executive Committee Member

Joji Decolongon has been a research coordinator at the Huntington Disease Medical Clinic/ Centre for Huntington Disease at The University of British Columbia since 2000. She has coordinated observational studies and phase I-III drug trials in Huntington disease (HD), including CARE-HD, RID-HD, PHAROS, PREDICT-HD, 2CARE, DOMINO, COHORT, Laxdale Study, TREND-HD, TRACKHD, Mitigate, LEGATO-HD, ISIS 443139 and Roche BN studies. She received the Outstanding Coordinator of the Year award from the HSG in 2018
. Having been a member of HSG since 2000, Joji is proud to be part of a caring and thoughtful community of HD researchers.
Karen Marder, MD, MPH
Executive Committee Member

Dr. Marder is the Sally Kerlin Professor of Neurology at Columbia University Medical Center. She has served as the Chief of the Division of Aging and Dementia since 2001 and has directed the United Council for Neurologic Subspecialties (UCNS) fellowship in Behavioral Neurology and Neuropsychiatry since its inception. In both research and patient care, Dr. Marder is focused on the epidemiology and treatment of cognitive, behavioral, and motor impairments in a range of neurodegenerative diseases, including Parkinson’s disease (PD), Huntington’s Disease (HD), Dementia with Lewy Bodies, Alzheimer’s disease (AD) and related disorders, and HIV dementia. Since 1998, Dr. Marder has been characterizing the earliest motor and non-motor signs associated with genetic forms of PD and HD. She has had continuous NIH funding since 1989. Dr. Marder has participated in almost all the clinical trials and observational studies sponsored by the HSG and served on steering committees for large scale studies including PHAROS and 2CARE. She was in the first group of elected HSG Executive Committee members in 1996-1999. She has attended all but the first HSG meeting and contributed to the development of the original UHDRS. Dr. Marder received the Investigator of the Year award from the HSG in 2018.
Jack Griffin
Executive Committee Member

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.
Sandra Kostyk, MD, PhD
Executive Committee Member

Dr. Sandra Kostyk received her MD and PhD degrees from the Pritzker School of Medicine at the University of Chicago. Her PhD research focused on understanding the neuronal circuitry underlying visually directed movements in an amphibian model of motor control. She completed her Neurology residency at the Massachusetts General Hospital, Boston, MA. After completing the residency program, she received an NIH Physician Scientist K award to study neurotrophic growth factors in a rodent model of CNS injury at Children’s Hospital and the Dana Farber Cancer Institute in Boston, MA. She and her family moved to The Ohio State University in Columbus, Ohio in 1998. Dr. Kostyk has been the medical director of the HDSA Center of Excellence at The Ohio State University Wexner Medical Center since 2000. She has participated in numerous HSG, industry and foundation sponsored HD clinical trials including PHAROS, COHORT-HD, 2CARE, CREST-E, REACH2HD, HORIZON, TETRA-HD, ENROLL-HD, ARC-HD, Amaryllis and SIGNAL. As a founding member of the OSU laboratory for Mobility and Exercise for Neurodegenerative Disorders (MEND lab) she continues to work with a team of therapists on developing ways to better assess mobility, balance and safety issues in individuals with HD including the use of body sensors, treadmill training and dance programs. She is active in the local HDSA Central Ohio Chapter and has participated in numerous Team Hope Walks, Hoop-a-thons, Swim meets and many other events throughout central Ohio aimed towards increasing HD awareness and to help improve care and support options for individuals and families affected by HD.
Sarah Noonberg, MD, PhD
Executive Committee Member

Sarah is currently the Chief Medical Officer at Nohla Therapeutics, a biotechnology company focused on the discovery and development of universal, off-the-shelf cell therapies for patients with hematologic malignancies and other serious diseases. Prior to joining Nohla, Sarah served as Chief Medical Officer for Prothena Corporation, Head of Global Clinical Development at BioMarin Pharmaceuticals Inc., and Senior Vice President of Early Development at Medivation where she was responsible for clinical development programs using gene therapies, oligonucleotides, recombinant proteins and small molecules to address a diverse range of neurodegenerative, neuromuscular, metabolic, and hematologic/oncologic diseases. Earlier in her career she led clinical studies in Huntington disease in partnership with the Huntington Study Group. Sarah currently serves on the Board of Directors at Protagonist Therapeutics. She earned her MD at the University of California, San Francisco, her PhD in Bioengineering at the University of California, Berkeley, and her BS at Dartmouth College.
Ralf Relimann, MD, 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), 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.
Joni SteinmanJoni Steinman
Executive Committee Member

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.
Julie Stout, PhD
Executive Committee Member

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.