Ira Shoulson, MD (1946–2024)

On May 12, 2024, our community lost a tireless champion of innovation for patients and families with movement disorders. Ira Shoulson, MD, was a source of inspiration, hope, and solace for clinicians, investigators, study participants, colleagues, and, always, his patients.

Ira's training, after an undergraduate degree at the University of Pennsylvania, began at the University of Rochester School of Medicine & Dentistry, where he fell under the influence of George Engel, MD, an internist/psychiatrist and the father of the biopsychosocial model of medicine, a patient-centered approach that considers psychological and social as well as biological factors as contributors to health. Dr. Engel was renowned for his perceptive and revealing interviewing skills, and Ira carried that ability throughout his career. After 2 years of internal medicine training in Rochester, he spent 2 years at the NIH, primarily with Tom Chase, MD (a pioneer in the neuropharmacology of Parkinson's disease), and then another 2 years back in Rochester as a neurology resident, followed by a year as chief resident in both medicine and neurology. He then introduced the Movement Disorders program at Rochester under the acronym (he had a penchant for them) the MIND (Movement and Inherited Neurological Disorders) Unit. His first recruit to help in caring for outpatients was a registered nurse, a first for the institution. The hospital restrictions confined her official duties to obtaining weights and blood pressures, values Ira prized above all other data save the history. We never observed Ira engage with a patient, whether in the clinic or hospital, without a warm, direct handshake, a set of postural blood pressures, and an assessment of weight. After that, the engaging conversation began, always in an unhurried and illuminating fashion. Ira used to joke that early on the nurse was allowed to take only blood pressures and weights, and once he was a professor that was all anyone let him do.

Ira was a relentless innovator. In 1987 he was awarded the first NINDS grant for a multicenter, randomized controlled trial of putative neuroprotective agents in Parkinson's disease: deprenyl (now called selegiline) and tocopherol (vitamin E), a project that became the DATATOP study. To facilitate the work he founded a nonprofit, academic collaboration, the Parkinson Study Group (PSG), whose core tenets were the free and unrestricted right to publish (facilitated by holding the database), democratic governance, and disclosure of conflicts of interest (a novel idea for the time). DATATOP and the PSG became engines for progress in Parkinson's disease. In the course of the design and execution of the trial, the PSG developed the methods, rating scales, and outcome measures that continue to drive the field today. The PSG also built a novel culture of inclusion among investigators and coordinators in Parkinson research studies; research coordinators were always included in both the design and analysis phase of studies. This fostered an environment where junior faculty and new coordinators could build their skill and confidence over time, and many eventually became leaders in the field in their own right. PSG trials were directly responsible for the approval of seven new drugs to treat Parkinson's disease.

Ira was also a cornerstone of research efforts to find new treatment for Huntington's disease. With Nancy Wexler, PhD, and Anne Young, MD, PhD, he spent more than 10 years traveling to northwestern Venezuela, evaluating patients and family members and collecting samples from the largest-known Huntington cohort. The work involved difficult conditions and impoverished environments, but Ira had a relentless enthusiasm for finding treatments for this devastating disease. The work in Venezuela led to the discovery of the HD gene, in 1993, and soon after Ira, together with Jack Penney, MD, founded the Huntington Study group. Using what they had learned from the PSG, they developed rating scales, research teams, and eventually conducted the trial that led to the approval of tetrabenazine, the first effective symptomatic therapy for HD. Today, many of the same methods are being used in trials of molecular treatments and other disease-modifying approaches for Huntington's disease.

The PSG spawned a plethora of similar organizations: Alzheimer Disease Cooperative Studies, the Northeast ALS Study Group, and the Muscle Study Group. Ira also founded the American Society for Experimental Neuro-Therapeutics (ASENT) when he sensed that the existing learned societies were not emphasizing therapeutic innovation sufficiently. ASENT has also flourished, and its journal Neurotherapeutics is well established.

Ira's advice was sought by many, including the NIH (NINDS Advisory Council), the FDA (Peripheral and Central Nervous System Advisory Committee), the National Academy of Medicine (where he was an elected member), and research networks (advisor to NeuroNext, StrokeNet). For his many accomplishments he received awards from the American Academy of Neurology (Movement Disorders Award, H. Houston Merritt Lecturer), The Michael J. Fox Foundation (Pritzker Prize), and the Movement Disorders Society (Honorary Member). Despite his fame and accolades, Ira was always immediately available to, and deeply interested in, the individuals he mentored, and there were literally scores of them stretching from the 1980s to the 2020s. Although firmly grounded in the immediacy of the patient relationship, Ira guided them all through methodological imperatives and introduced the next new technologies, from “electronic mail” in the 1980s to electronic data entry in the 1990s to adaptive study designs in the 2000s, and machine learning in the 2010s. Most recently, he blended these combined interests in the patient voice and developing technology by founding a company (Grey Matter Technologies) to capture patients' words verbatim and to give structure to them using natural language processing and machine learning algorithms. When that company was acquired, he immediately set to work creating a nonprofit foundation to make the technology widely available, even when he knew he was seriously ill. Sadly that work has been cut short by his untimely death. Efforts are in place to continue his legacy of listening carefully to patients and families as the most direct means to finding novel ways to address illness.

Ira had a remarkable career of patient care, research innovation, and heartfelt mentorship, but he also had a rich life beyond work. His family life with his wife Josie, their children Zach and Amanda, her husband Richard Friedrich, and their grandchildren Emma and Noah was a topic of every conversation, and of carefully preserved and curated times away from work. A favorite activity was spring training games for the Yankees, and every work trip included a serious review of baseball and soccer game schedules. With his trainees, friends, and colleagues he was charming, humorous, and generous, with his family even more so. All of us will deeply miss him in our personal and professional lives.

K.D.K. prepared the first draft. Both K.D.K and D.G.S. edited the manuscript and reviewed the final version.

Dr. Standaert is a member of the faculty of the University of Alabama at Birmingham and is supported by endowment and University funds. Dr. Standaert is an investigator in studies funded by Abbvie, Inc., the American Parkinson Disease Association, the Michael J. Fox Foundation for Parkinson Research, The National Parkinson Foundation, Alabama Department of Commerce, Alabama Innovation Fund, Genetech, the Department of Defense, and NIH grant P50NS108675. He has a clinical practice and is compensated for these activities through the University of Alabama Health Services Foundation. He serves as Deputy Editor for the journal Movement Disorders and is compensated for this role by the International Parkinson and Movement Disorders Society. In addition, since January 1, 2024 he has served as a consultant for or received honoraria from; Abbvie Inc.; Alnylam Pharmaceutics; Biohaven Pharmaceuticals; BlueRock Therapeutics; Curium Pharma; CVS/Pharmacy, Inc.; Eli Lilly, USA; F. Hoffman-La Roche; Intrance Pharmaceuticals; Kirchner Financial Services, Inc.; NodThera Pharmaceuticals, Inc.; Sanofi-Aventis; and Theravance, Inc. He has also received book royalties from McGraw-Hill Publishers. Dr. Kieburtz receives salary from the University of Rochester with grant support from Michael J Fox Foundation. He has equity interests and salary from Tox Stategies LLC, Hoover Brown LLC. Equity in Safe Therapeutics LLC, Inhibikase and Photopharmics.