The concertmaster steps down
Elizabeth Grandbois's benefit shows have put ALS in the spotlight, but now the disease is slowing her stride, writes ALEXANDRA SHIMO
ALEXANDRA SHIMO

When Elizabeth Grandbois steps on stage on Saturday surrounded by some of Canada's greatest musicians, the moment will be bittersweet.

Celebratory, because this mother of two has pulled it off. Producing seven Concerts of Hope with Tom Cochrane, Dan Hill, Glass Tiger, Murray McLauchlan, Ian Thomas and Cindy Church is an astounding achievement, especially when Grandbois, the main organizer, is severely weakened by amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

But poignant too, because after five years of fundraising through live music events, these cross-country concerts will be Grandbois's last.

"It's time for me to pass the torch," she says, in her wheelchair at home in Burlington, Ont. "I don't have the strength any more to take on this huge undertaking."


The tour, which begins Saturday in Vancouver and winds up next month in Corner Brook, builds on five years of similar concerts in Hamilton and Ottawa, which have raised a total of $1.9-million toward ALS research and services.

"Her vision is remarkable," says Kevin Hicks, who has helped Grandbois produce the concerts since they began in 1992. "This was a really ambitious undertaking. A lot of people didn't think it was going to work. But it's easy to say no to the concept, [and] hard to say no to Elizabeth."

One reason, Hicks says, is her presence and generosity of spirit. Although the disease has confined Grandbois to a wheelchair, and she finds it more difficult to talk, the 54-year-old does not seem sickly.

"Elizabeth is so beautiful, sometimes it's hard to make people believe that she's actually ill," says Elizabeth Cochrane, who met Grandbois when her husband, Tom Cochrane, performed at her first benefit concert. "She's radiant. It's very difficult to watch someone with so much vitality and passion lose their life. People take for granted basic life. She lives every moment."

At 54, Grandbois has already lived longer than expected. ALS causes the degeneration of motor nerve cells, which control movement through electrical impulses to the muscles. As the cells degenerate, the muscles weaken. The gradual loss of control, which begins in the limbs, extends to the lungs, and people lose the ability to breathe. About 80 per cent of patients die within two to five years of contracting the disease.

In the nine years since she was first diagnosed, Grandbois has lost strength in her arms and legs. Her voice has lost its vibrancy, and where she once loved to sing, now she only hums. Her feet swell and her joints hurt. Despite these changes, she defies the disease that will eventually reduce her to a brain trapped in an inert body.

Scientists do not know the cause of ALS; most of those who contract it, like Grandbois, have no family history of the disease. About 3,000 Canadians have ALS, and two or three die every day (a number far higher than the official AIDS death count in Canada). There is no known cure; the drugs that are available, such as Rilutek, extend life expectancy for just a few months.

"ALS and other neuromuscular diseases are tragically and unacceptably overlooked and marginalized because we are a medical minority," Grandbois adds. "We are not a priority. In truth, we are not profitable for the drug companies because we don't live long enough."

Grandbois is well versed in how the disease ravages the body, and the fate that awaits her. ALS is expensive because sufferers lose the ability to care for themselves. As the disease progresses, the expenses add up: There are the modifications that must be made to make a home wheelchair-accessible, medications and nursing -- only a small proportion of which are covered by the government.

The ALS Society of Canada estimates that ALS puts a family $140,000 out of pocket over the course of the illness, which is why fundraising efforts for families and for research money are desperately needed, says Bobbi Greenberg, the society's director of communications.

"We need more research dollars to find a cure and more awareness of this disease, which is why efforts like the Concerts of Hope are so valuable," Greenberg says.

For her part, Grandbois hopes that someone else will take over and organize more fundraising concerts next year, when her health prevents her from repeating this ambitious undertaking. "This is an example I want to set for my children and all Canadians," she says. "I want people to understand what is possible in the face of such difficult circumstances. This is my last gift to Canada, because I don't know if I'll have the strength to continue."
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