Copyright 2003 The Patriot Ledger
The Patriot Ledger (Quincy, MA)
May 19, 2003 Monday Souths Edition
SECTION: NEWS, Pg. 13
LENGTH: 579 words
BYLINE: Rob Rogers
For The Patriot Ledger

ROCKLAND - Barbara Light McDonald was 19 when her mother was diagnosed with amyotrophic lateral sclerosis or ALS, better known as Lou Gehrig's disease.

"She was 41. She lived 18 months after the diagnosis," said McDonald, 42. "She lived in the hospital for the last four months."

In March, McDonald was diagnosed with ALS, a disease that kills nerve cells, leaving its victims weaker and weaker until they finally become paralyzed. There is no known cure.

"The worst of it," McDonald said, "is that I know what to expect."

On May 30, McDonald's friends and family members will host a benefit dinner in her honor at the Rockland Sons of Italy. Money from the event will be used to cover McDonald's rising medical bills and the cost of renovating her home.

"We're building a handicapped shower, making the house wheelchair-accessible, and moving Barbara's room downstairs," said Brian McDonald, her husband.

Barbara McDonald hopes the benefit will help her family pay for the cost of her care.

"My insurance covers 80 percent of it, but additional medication is up to about $1,000 a month," said McDonald, who formerly worked at Children's Hospital in Boston. "And I'm still at the beginning stages. There's going to be increased medication as the disease goes along, and I don't know what the medical bills are going to be like down the road."

Although she is no longer able to work for herself - she has used crutches to walk since March and expects to have to use a wheelchair soon - she continues to work for others suffering from the disease. She plans to visit the State House on June 4 as part of ALS Advocacy Day, hoping to convince lawmakers and researchers that the disease deserves their attention.

"Because it affects fewer than 100,000 people in the United States, the amount of research done on the disease is limited," said Patricia Donnelly, McDonald's sister.

With more attention and more research money focused on the disease, pharmaceutical companies would be more likely to seek out treatments for ALS, McDonald said.

Although ALS research has come a long way in the years since McDonald's mother died from the disease, researchers still do not know whether genetic factors, the victim's environment or some combination of both cause the disease. McDonald believes her longtime proximity to the South Weymouth Naval Air Station may have triggered her symptoms. That's why she's pushing for the state to create a registry of ALS victims. She hopes state health authorities will use information about the victims' location and surrounding environment to identify potential causes of the disease.

A bill to create a registry is being studied by the Legislature's Health Care Committee, and testimony is expected in July.

"I'll be there," McDonald said.

Until then, she plans to spend time with her family, who organized the benefit in her honor.

"There's going to be all kinds of good prizes - four tickets to the 406 Club (at Fenway Park), autographed baseballs and pucks, an Aerosmith T-shirt signed by Steven Tyler and Joe Perry, Red Sox tickets and homemade quilts," Alan McDonald said.

The event will take place from 7 p.m. to midnight at the Sons of Italy hall at 75 Market St. Tickets, at $10, can be purchased at the door or by calling 781-985-4214 or 781-871-7211. Donations may also be made to the Barbara McDonald Benefit Fund, c/o Rockland Trust Co., 288 Union St., Rockland 02370.