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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.
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
"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
"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
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
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