ALS . HELP

In 1999, doctors told the Holliston resident he had a variant of Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig's disease. While most patients with ALS succumb to the crippling and fatal neuromuscular disease within two to five years, O'Leary has responded successfully to an experimental treatment that has allowed him to lead a full life.

Now he's fighting for others by working nonstop with colleagues from Brigham and Women's Hospital to launch a Las Vegas-style fund-raiser on Saturday, June 18, at Gillette Stadium. All proceeds from "ALS Vegas" will benefit research at Brigham and Women's Hospital and Massachusetts General Hospital, as well as patient and family support provided by Curt and Shonda Schilling's "Make a Pitch Foundation" and the Massachusetts Chapter of the ALS Association.

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 leading ALS researcher at Massachusetts General Hospital whose work helped discover the ALS gene.

Brown recommended that O'Leary try regular infusions of intravenous immunobglobulin, IVIG, a type of protein found in human blood that helps to fight off harmful bacteria, viruses and germs. IVIG is not effective for most patients, but it worked for O'Leary.

"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.

Joseph and Andrea O'Leary with their children, Abbi, 5, and Matthew, 1. (Lisa Cassidy photo)

In addition to O'Leary's success with treatment, he considers himself extremely fortunate to have the insurance to cover the $21,000 cost per month. But when his insurance company stopped coverage for two months last fall, he suddenly knew what it was like to have overwhelming medical costs and no insurance -- a grim reality for many ALS patients and people living with other diseases and medical conditions.

"I started to get worried after six weeks without treatment," said O'Leary, "The disease became very visible, very fast."

His insurance was reinstated two months later, but during that time the disease spread to O'Leary's leg. While he has yet to fully recover from the lapse of treatment, resuming IVIG helped him regain most of his strength, and going through the setback prompted him to become more open about living with his disease and to help raise awareness and much-needed funding for research.

"Joe is the only patient I've known who is responding to any form of treatment, and the goal of this and other ALS events is to find a treatment for everyone," said Scott Edelstein, director of events and public relations for the ALS Association, Massachusetts Chapter. "My mother has a classic case of ALS. At age 50, she went from being completely healthy to completely paralyzed within a year and a half. ALS is a disease where there is no cure. So it's great what Joe is doing -- he knows he's fortunate and he's working to help others find treatment."

Finding a treatment as well as understanding how ALS evolves is the focus of Brown's work at MGH

"Our research program is two-pronged: One set of studies attempts to understand how ALS arises, focusing on genetic factors that predispose to this disease," said Brown. "The other set of studies focuses on strategies for treatment. The latter includes efforts in drug discovery, inactivation of toxic genes and use of gene therapy.

"Virtually all elements of this program can be enhanced with more funding. Over the coming year, we are emphasizing a new program to study ALS genes and another that addresses the general problem of how to enhance delivery of treatments into the spinal cord and brain," said Brown. "We are also helping to organize a national database that will allow collection of DNA from a target group of 2,000 ALS patients and at least that many control individuals."

He added that Massachusetts is considering establishing an ALS state registry, the first in the country, and that it would be helpful for people to contact their state legislators to support this program.

For O'Leary, his goal is to raise money through ALS Vegas and make it an annual event. "Without the tremendous support of my colleagues and the generous sponsorships, we wouldn't have been able to get this off the ground," he said. "My hope is that every year we can help raise money, give to families who need support, raise awareness and continue the cutting edge research now being done in Boston, until we find a cure."

The first of its kind in Massachusetts, ALS Vegas will turn Gillette Stadium into a giant casino, complete with 25 gaming tables, dinner, music, silent and live auctions, entertainment and local celebrities such as New England Patriots Rosevelt Colvin and Christian Fauria. The event is sponsored by the employees of Danvers-based William A. Berry & Son Inc. through The Berry Fund Charitable Foundation, as well as other Boston-area companies and organizations.

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