Worcester Business Journal

8 Worcester Business Journal | March 10, 2025 | wbjournal.com While UMass Chan celebrated an historic donation and cemented its position as a leader in ALS research, the school raised red flags about planned federal cuts BY MICA KANNER-MASCOLO WBJ Staff Writer I n 2014, it was hard to log into any social media platform and not see your neighbors and Hollywood starlets alike pouring gallons of frigid water over their heads, tak- ing part in the viral Ice Bucket Challenge. e trend in which participants tagged each other in videos, daring them to either donate to ALS research or dump a jug of ice water over their heads, generated an unprecedented $115 million for research of the progressive neurodegenerative disease, according to Virginia-based research and advocacy nonprofit e ALS Association. Eleven years later, UMass Chan Medi- cal School received a similarly staggering donation when the Florida-based Paul J. DiMare Foundation gied the Worcester school $35 million for the research of neurodegenerative and genetic diseases, particularly ALS. e donation was the third largest in the history of the entire University of Massachusetts system. e gi emphasizes the great need for funding for the disease, said Dr. Robert Brown, UMass Chan professor of neurology and director of the Program in Neurotherapeutics. And these private donations may soon become significantly more important as the federal government is weighing funding cuts to health research: cuts so large that a single donation like the one from the DiMare Foundation can't make up for the loss. $35M from a patient e DiMare Foundation is named aer the late DiMare family patriarch who, while he was ill, was keenly focused on assuring the acceleration of discovery of ALS, said UMass Chan Chancellor Dr. Michael Collins. "Many patients, when they get a difficult diagnosis, they want to be sure that people are doing every- thing they possibly can to try to find a cure or a therapy for a disease. I don't think he was any different than that, from what I'm told," said Collins. While in treatment, DiMare became a patient of Brown, a pioneer in the world of ALS research. In 1993, Brown led a team of re- searchers who discovered the first gene linked to the inherited form of ALS. Since then, more than 50 ALS genes PHOTO | COURTESY OF UMASS CHAN MEDICAL SCHOOL have been identi- fied, each offering researchers yet another option for treatment, said Brown. "Each defines a step or a pathway in the process of motor neuron death in the dis- ease, and therefore, each one also defines potential targets for treatment," he said. irty years aer the gene's discovery, the first therapy for ALS linked to the gene was approved by the U.S. Food & Drug Administration, a timeline em- bodying the long journey from concept to consumer. While the pipeline for developing ALS therapy is full, researchers need de- finitive proof for each potential therapy, said Brown. The difficulty in curing ALS One of the greatest obstacles in ALS research is that no one knows what causes the disease, said Kuldip Dave, senior vice president of research at e ALS Association. Funding research Dr. Michael Collins, chancellor at UMass Chan Medical School Kuldip Dave, senior vice president of research at The ALS Association Dr. Robert Brown spent 30 years working at Massachusetts General Hospital in Boston, but was drawn to UMass Chan Medical School in 2008 because of the gene-related disease research being conducted at the Worcester university.

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