Claude St-Jean 1952-2006

Diagnosed at 15 with Friedreich's ataxia, he raised funds and relentlessly encouraged research into a deadly disease that claims one in 20,000 Quebecers.

He was the driving force behind a campaign to find a cure for a fatal disease of the nervous system called Friedreich's ataxia. A teenager when his own symptoms first developed. Claude St-Jean once confided to his diary "I feel like a dog whose chain is gradually being shortened." He was 15-year-old when his life was suddenly and irreversibly changed. Yet, for all the relentless progress of the disease, he never accepted his predicament.

"Logic tells me I won't make it," he once wrote. "I know it has accelerated in the last two years. But I will at least have the satisfaction of knowing that I have tried everything, of having helped others, of having fought to the end. And who knows? Perhaps even winning."

When he was first diagnosed with ataxia, there was little or no research being conducted into the nature of the illness, which causes slow, unrelenting damage to the nervous system. First described in 1860 by German doctor Nicholas Friedreich, symptoms included coordination problems, such as clumsiness, awkwardness, slurred speech, and frequent falling and unsteady movement.

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