Amazing ALS case + IVIG

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Sat, 31 May 2008 17:55:07
By IMRAN KHAN, MBBS.,

ALS that reponds to IVIG or MMN

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 isproject manager of construction -- a job that requires him to alwaysbe on call. Until he began promoting the June 18 event just a fewmonths 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 goingthrough the setback prompted him to become more open about livingwith his disease and to help raise awareness and much-needed fundingfor 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 yearand 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 tohelp others find treatment."
  Finding a treatment as well as understanding how ALS evolves isthe 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 thatpredispose to this disease," said Brown. "The other set of studiesfocuses on strategies for treatment. The latter includes efforts indrug 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 ofhow to enhance delivery of treatments into the spinal cord and brain," said Brown. "We are also helping to organize a nationaldatabase that will allow collection of DNA from a target group of2,000 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 suppor tthis program.

For O'Leary, his goal is to raise money through ALS Vegas andmake it an annual event. "Without the tremendous support of mycolleagues and the generous sponsorships, we wouldn't have been ableto get this off the ground," he said. "My hope is that every year wecan help raise money, give to families who need support, raiseawareness 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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