Study showing ALS is Cidp
MMF & ALS
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.
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
"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
Finding a treatment as well as understanding how ALS evolves is the focus
of Brown's work at MGH
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
"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.