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O.Leary, 44, first noticed something was wrong in 1997 when he had trouble holding his newspaper while riding on the commuter train. After experiencing recurring cramping in his left arm and hand and seeing a series of doctors over the next two years, he was finally diagnosed by Dr. Robert H. Brown Jr., a ALS researcher at Massachusetts General Hospital whose work helped discover the ALS gene.
Now he is fighting for others by working with colleagues from Brigham and Womens Hospital to launch a fund-raiser on Saturday, June 18, at Gillette Stadium. All proceeds from will benefit research at Massachusetts General Hospital. .
Joe is not the only person to respond this way, but the numbers are small," said Brown, director of the Day Neuromuscular Research Laboratory and Muscular Dystrophy Association clinic at MGH and a professor of neurology at Harvard Medical School. "His case has taught that under some circumstances, a trial of IVIG is a reasonable intervention early in cases of apparent ALS."
For the past seven years, O;Leary has received treatment every three weeks, which improves his strength for several days while keeping the disease from progressing. And, with the exception of an occasional reaction to his medicine, he hasn;t slowed down. From his home in Holliston where he lives with his wife, Andrea, and their two young children, he commutes to Brigham and Women;s where he is project manager of construction -- a job that requires him to always be on call. Until he began promoting the June 18 event just a few months ago, most of his coworkers didn;t know he was ill.
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