B.C. government helps fund new ALS research position at UBC

VICTORIA — The British Columbia government is providing $2 million to the ALS Society of BC, helping to establish a permanent ALS research professorship at the University of British Columbia.

The province says the dedicated clinician and scientist will support patients living with the disease through care and research for a cure, with the goal of increasing patients' access to local clinical trials.

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Health Minister Adrian Dix says clinical trials for ALS haven't happened in B.C. for nearly a decade and patients have been left out of trials that mostly happen outside the province and Canada.

He says local clinical trials would mean patients have the chance to participate in potentially life-changing research closer to home.

The province previously gave the ALS Society $1 million to support its fundraising efforts for Project Hope, which aimed to raise close to $5.3 million for an endowment to fund the new position based at the University of British Columbia's centre for brain health.

About 400 people in B.C. live with amyotrophic lateral sclerosis, or ALS. It's a fatal neurodegenerative disease where patients typically become unable to move, speak, swallow and breathe as it progresses.

Brad MacKenzie, the chair of the ALS society's advocacy committee, says he's grateful that the B.C. government and the university recognized the importance of providing world-class care locally.

"Your life changes from the moment that you're diagnosed, and often, access to new medical resources becomes one's primary inspiration to keep fighting the disease," says MacKenzie, who lives with the disease.

This report by The Canadian Press was first published May 12, 2021.

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