In Memoriam: Ira Shoulson Leaves a Legacy of Hope for Parkinson’s and Huntington’s Patients

May. 20, 2024

Ira Shoulson, MD, whose pioneering contributions in clinical research enhanced the quality of life for individuals battling Parkinson’s and Huntington’s disease, passed away on Sunday, May 12, 2024, from cancer at the age of 78.

“Ira’s great humanism allowed him to make everyone around him feel seen, valued, and heard,” said Bob Holloway, MD, MPH, chair of the University of Rochester Medical Center (URMC) Department of Neurology. “His warmth made everyone warmer, his comfort made everyone more comfortable, and his kindness made everyone kinder.”


Shoulson was a leader in the field of experimental neurotherapeutics, championed the randomized controlled clinical trial, and recognized early the need to develop research partnerships with biostatisticians. He established the URMC Clinical Trials Coordination Center (CTCC), a unique academic-based research organization that works with industry, foundations, and governmental researchers to bring new therapies to market. Shouldson also founded the Parkinson Study Group (1985) and the Huntington Study Group (1994), two international academic consortia that have played a critical role in the research and development of treatments for these diseases and related neurodegenerative and neurogenetic disorders.

Shoulson was a key investigator in the US-Venezuela Collaborative Huntington Disease Project, which identified the gene responsible for this fatal hereditary disorder. He served as principal investigator of two landmark National Institutes of Health-sponsored clinical trials—Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonism (DATATOP) and Prospective Huntington At Risk Observational Study (PHAROS)—and helped lead more than 35 other multi-center clinical research studies. Shoulson played an instrumental role in the development of 10 new drugs for neurological disorders, including seven for Parkinson disease, two for Huntington disease, and one for attention deficit disorder.

Shoulson received his medical degree (1971) and training in medicine (1971-73) and neurology (1975-77) from the University of Rochester School of Medicine and Dentistry and trained in experimental therapeutics at the National Institutes of Health (1973-75). Taught at URMC by George Engel, MD, John Romano, MD, and Robert Joynt, MD, he embraced the biopsychosocial model of medicine.

From 1990 until 2011, he held the Louis C. Lasagna Professor of Experimental Therapeutics and professor of Neurology, Pharmacology, and Medicine at URMC. Shoulson held an adjunct appointment in Neurology at URMC until his death. From 2011 to 2018, he was professor of Neurology, Pharmacology, and Human Science, and director of the Program for Regulatory Science and Medicine at Georgetown University.  He returned to URMC in 2018 as professor of Neurology and the Center for Health + Technology.

Shoulson was associate editor of JAMA Neurology, an elected member of the National Academy of Medicine, a member of the National Institute of Neurological Disorders and Stroke Council, president of the American Society for Experimental Neurotherapeutics, and a recipient of the Robert A. Pritzker Prize from the Michael J. Fox Foundation.

In 2017, he founded Grey Matter Technologies, a company whose goals was to improve communication, clinical care, and research.  In lieu of flowers, the family requests donation to the Making Patients Heard Research Foundation. Shoulson is survived by his wife Josephine, family, friends, grateful patients, and colleagues.