Friday, April 25, 2003 - BRATTLEBORO -- When her mother was diagnosed with Lou Gehrig's disease, local student Tonia Zampieri determined to help build support for others whose lives have been affected by the rare but debilitating disease.

"Before my mother's diagnosis, I knew the disease existed, but I really didn't know much about it," Zampieri said. "I want the people in this community to know that although it's a rare disease, it does affect local families."

For nearly all her life, Zampieri knew her mother, Toni Redmond, a Barre native and a registered nurse, to be an able-bodied, independent woman dedicated to helping others. Early last summer, however, Redmond began to notice a seemingly unexplainable weakness in her hands. Redmond, who was working as a health-care manager at the time, found that she could not perform simple tasks such as picking up her laptop computer or shifting her car into reverse.

"She thought it was just a pinched nerve at the time," Zampieri recalled. "She didn't have any pain, it was just weakness in her hands. She started going for tests in June, but it's not (an easy illness) to diagnose. It took three months to diagnose it."

Zampieri and her family were shocked to hear on Sept. 11, 2002, that tests had proven that Redmond had amyotrophic lateral sclerosis, also known as ALS. The disease, first described in detail in 1869 by French physician Jean-Martin Charcot, is typically referred to in the United States as Lou Gehrig's disease in honor of the legendary New York Yankees first baseman who died of the illness in 1941.

The incurable disease often starts innocuously with reports of mild muscle weakness in the hands or feet. Eventually, sufferers' muscles deteriorate to the point where they cannot walk or care for themselves. Death from respiratory failure or similar secondary illness usually occurs within two to five years of the initial diagnosis, although some people may live 10 years or longer.

British physicist Stephen Hawking has lived for more than a decade with a motor neuron disease that is linked to ALS.

There is no cure for ALS, and treatment largely consists of patient and family support. Classified by the American Medical Association as a rare disease, about 5,000 Americans each year are diagnosed with it, corresponding to an incidence of about one or two out of every 100,000 people.

Zampieri noted that in the absence of a major public figure spearheading an ALS awareness effort, information about the disease may be difficult to come by at first. Researchers, too, have faced an uphill battle in trying to ascertain the disease's origin. Although about one out of every 10 ALS cases is believed to be genetically linked, the vast majority of patients, such as Redmond, are diagnosed with sporadic ALS, which cannot be linked to familial factors.

Scientists are looking at environmental factors as a possible origin of the disease, and some areas seem to have higher instances of ALS than others. For example, the Pacific island of Guam has cases of ALS some 50 to 150 times higher than normal. Vermont also seems to have a high incidence of ALS. Out of the population of approximately 600,000, one would expect to find a maximum of a dozen cases of ALS in the entire state, but six cases were reported in the town of Plainfield alone during the 1970s.

Describing her initial reaction to her mother's diagnosis, Zampieri said she was scared and saddened. The illness seems to have moved quickly, she said, and her mother is now wheelchair-bound, although she can move around her Middlesex home with the aid of a walker.

Zampieri, who is studying intercultural service and management at the School for International Training's World Learning program, became involved in local support groups for families affected by ALS, and she felt inspired to hold an event that would both increase public awareness of the disease and help to raise funds for those suffering from it.

She said she soon found support among her peers at S.I.T. Several students, including one with a family member suffering from Parkinson's disease, stepped forward to help. Zampieri's own experience organizing fund-raisers for leukemia in Florida gave her a strong background on the task, and together, she and her fellow students organized the upcoming "Race for a Reason." Scheduled for May 10, the race will help to raise money for the Northern New England ALS Association, a nonprofit group dedicated to finding a cure for the disease and providing support for families and individuals affected by it.

Although Redmond's mobility has been affected greatly by advancing ALS, both mother and daughter are expected to be present together at the race. In a brief interview Thursday morning, Redmond appeared to be in excellent spirits. Although the illness has affected her mobility, she said, it hasn't affected her love of adventure.

"I'm a little tired today because my husband and I just returned from an 8,000-mile trip," she said, describing her recent foray to the American South and Midwest to visit relatives.

Regarding her health, she said, some days are better than others.

"Not every day is great, but I know I have a lot to be grateful for," she said.

She added that she has great pride in her daughter not only because of her sense of compassion, but because she took the vital step of spreading the word about a debilitating illness that few people understand. Often, she said, people diagnosed with the disease and their family members may feel sensitive about the subject, and she praised her daughter's skill at drawing much-needed attention to a little-known disease.

"You know, everybody handles it differently, and not everyone is able to talk about it," she said. "I'm really proud of my daughter."

The "Race for a Reason" begins at S.I.T. at 8 a.m. on May 10. Registration is available for a $20 donation, and participants may walk, jog or run at the event.

Prizes and refreshments will be available. For more information, contact Zampieri at 254-7702 or via e-mail at race4reason@hotmail.com . Registration forms and more information can be found online at http://public.sit.edu/test/netimpact/project1/r4r.html