Brad MacKenzie, advocacy chair for the ALS Society of B.C., says having research projects in the province allows people here to have access to cutting-edge treatments now being developed. (B.C. government video)

Brad MacKenzie, advocacy chair for the ALS Society of B.C., says having research projects in the province allows people here to have access to cutting-edge treatments now being developed. (B.C. government video)

B.C. funds research chair for Lou Gehrig’s disease at UBC

Pandemic has cut off patient access to international projects

The B.C. government is donating $3 million to add to the $2.3 million raised from private donations to establish a research professorship at the University of B.C. studying ALS, a fatal neurodegenerative condition also known as Lou Gehrig’s disease.

Health Minister Adrian Dix said Wednesday the province initially granted a request for $1 million last year, and after the fundraising effort of the ALS Society of B.C. called Project Hope, it has added another $2 million to make the position happen.

There are about 400 people diagnosed with ALS (amyotrophic lateral sclerosis) in B.C., and with no research for new treatments based in Canada, the COVID-19 pandemic has left them out of international efforts. in August 2020, the health ministry covered a new drug called edaravone after a clinical trial helped slow the worsening of the disease in some ALS patients.

“ALS is not an incurable disease,” said Brad MacKenzie, chair of the ALS Society’s advocacy committee. “Now that Project Hope is successful, British Columbians living with ALS, myself included, should feel proud that we will soon have more local access to cutting-edge, world-class clinical trials for the disease.”

Dr. Dermot Kelleher, dean of medicine at UBC, said until recently there was little hope for treating ALS sufferers, who lose the ability to move, speak, swallow and breathe as it progresses. But new drug and gene therapies are in clinical trials. There will be a dedicated position in the university’s Djavid Mowfaghian Centre for Brain Health, where research on Alzheimer’s and Parkinson’s diseases is being conducted. The G.F. Strong Rehabilitation Centre also provides service to ALS patients.

The ALS Society of B.C. was founded in 1981 by ALS patients, family members and health care professionals to assist people with the condition and their caregivers.

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