Ira Shoulson

Dr. Shoulson saw the world differently. Descending from a family of rabbis, he chose an alternative path – medicine. His embrace of new ideas and his organizational skills took neurology from a field characterized by therapeutic nihilism to one bristling with new therapies.

Dr. Shoulson began his education at the University of Pennsylvania (1963-67). He received his MD degree and postdoctoral training in medicine (1971-73) and neurology (1975-77) at the University of Rochester and in experimental therapeutics at the National Institutes of Health (1973-75). At the University of Rochester he came under the mentorship of a psychiatrist, Dr. George Engel, who was introducing the biopsychosocial model into medicine, which proposed that health is determined by social and psychological factors in addition to biological ones. This pioneering approach broadened the focus on individuals as “people” with unique personal stories and not just “patients” in the hospital or “subjects” in research, a view that influenced Dr. Shoulson deeply and that he never lost.

After training in medicine and neurology at the University of Rochester and experimental therapeutics at the National Institutes of Health, Dr. Shoulson was ready to make his mark. He returned to the University of Rochester determined to make neurological conditions treatable, especially those characterized by involuntary movements. He founded the Parkinson Study Group in 1985 and the Huntington Study Group in 1994 and organized academic researchers from around the world to design, conduct, and analyze results of randomized controlled trials of novel therapies. While a common model today, such an approach was unconventional in the 1980s and was met with skepticism. Dr. Shoulson, characteristically, was undeterred.

Along with his colleagues, Dr. Shoulson persevered with a landmark study in the New England Journal of Medicine in 1989 showing that a medicine called selegiline delayed the onset of disability in Parkinson disease. This success was followed by many others, including six more treatments for Parkinson disease and the first two ever for a rare genetic disorder called Huntington disease. The latter disease brought Dr. Shoulson into direct contact with affected individuals a world away from Rochester, New York.

Led by the researcher and advocate, Dr. Nancy Wexler, Dr. Shoulson and colleagues travelled annually over 10 years to Lake Maracaibo in northwest Venezuela to evaluate a remote and isolated population affected by a condition known locally as “el mal.” The bad disease ran in families and caused previously healthy adults to move incessantly, behave erratically, think irrationally, and ultimately die. Dr. Shoulson and the team knew there must be a genetic cause (and thus the promise of a cure) and sought to find it.

After tracing the disease through family trees that covered walls and collecting thousands of blood samples, in 1983 they (led by the geneticist Dr. James Gusella from Harvard) found the genetic marker for the disease, and in 1993, an expansion in the gene huntingtin was identified as the disease’s cause. Along with lung disease cystic fibrosis, Huntington disease became one of the first to be identified as caused by a change in a single gene and ushered in efforts to map the entire human genome.

Dr. Shoulson was formerly a Joseph P. Kennedy Jr. Foundation health policy fellow in the U.S. Senate, a member of the National Institute of Neurological Disorders and Stroke Council, president of the American Society for Experimental Neurotherapeutics, an associate editor of JAMA Neurology, an elected member of the National Academy of Medicine, a recipient of the Robert A. Pritzker Prize from the Michael J. Fox Foundation, a Professor of Neurology and Director of the Program for Regulatory Science and Medicine at Georgetown University, and the author of more than 340 scientific reports.

In 2017, Dr. Shoulson founded Grey Matter Technologies Inc, a company focused on “making patients heard” by capturing and interpreting patient reports using natural language processing and machine learning and applying these technologies to clinical research and care. Grey Matter Technologies was acquired by Modality.ai where Dr. Shoulson was serving as its chief medical officer.

Dr. Shoulson’s final project was the Making Patients Heard™ Research Foundation (MPH), which he founded in September 2022 as a non-profit charitable organization to empower and enable patients to describe their feelings and experiences about their illness and be better narrators of their health, improve tools for online research and care, and develop clinically meaningful treatments.

Beyond his research contributions, Dr. Shoulson cared for thousands of patients with Parkinson, Huntington, Wilson, and many other neurological diseases. He also trained a generation of neurologists and researchers who today span the world.

Through it all, people are what mattered most to Dr. Shoulson. In addition to his work, Ira's other great love was his wife, Josie. Their enduring love story began when they met in Washington D.C., where Josie worked as a nurse. They were married for 41 years and shared two children together, Zachariah and Amanda. The family enjoyed many adventures, traveling the world together and spending time with loved ones near and far. When he wasn't working, Dr. Shoulson loved to walk along the beach, often for many miles. He was especially fond of taking family trips to Grand Cayman, his favorite place to relax. Later in life, Ira and Josie settled into a home on the beach in Longboat Key, Florida. He enjoyed good food of all kinds and loved sharing meals with his family and friends. He especially loved spending time with his two adoring grandchildren, taking them to baseball games, and watching them play on the beach and in the ocean.

Dr. Shoulson leaves behind grateful patients and families, admiring protégés, and thankful colleagues. He is survived by his wife, Josie (Paskevich) Shoulson; his sister, Jolene Kellner; his son Zachariah; his daughter Amanda and son-in-law Richard Friedrich; two grandchildren, Noah and Emma; and many extended family members who will miss him dearly.

Somehow this is still an abbreviated version of everything Ira accomplished. Goodbye Ira, we love you.

*In lieu of flowers please consider making a donation to the Making Patients Heard™ Research Foundation (MPH)*

Making Patients Heard™ Research Foundation (MPH)*

https://makingpatientsheard.org/