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.

RELATED: MRI scanners reduce use of rats, mice for research

RELATED: UVic student picked for biomedical research


@tomfletcherbc
tfletcher@blackpress.ca

Like us on Facebook and follow us on Twitter.

BC legislature

Just Posted

Langley Mustangs high jumper Aiden Grout, seen here in McLeod Athletic Park in Langley in 2019, has just qualified for several top international competitions, including the Olympic trials. (Photo courtesy Vid Wadhwani)
VIDEO: With one jump, Langley Mustangs high jumper Aiden Grout has qualified for three international competitions

Maple Ridge resident records new personal best at McLeod Athletic Park in Langley

Maple Ridge’s Eileen Robinson celebrated international Trails Day by hitting the Trans-Canada Trail in her hometown. It’s marked on the first Saturday of June, and encourages people to get out and use and enjoy their local trails, which both Maple Ridge and Pitt Meadows have many. (Special to The News)
SHARE: Celebrating Trails Day by getting outdoors

Send us your photo showing how you view Maple Ridge or Pitt Meadows, and it could be featured soon

Shail Wolf admires the ancient tree the protesters have dubbed the grandmother. (Zoe Ducklow/News Staff)
OUR VIEWS: Old-growth can kicked down the road

Latest deferral avoids a difficult conversation about how, when to stop logging our oldest forests

Maple Ridge brothers Paul and Johnnie Walker hit the trails at Rolley Lake, just across the border into Mission. Johnnie did the modelling both with the downed tree and at the waterfalls.(Special to The News)
SHARE: Discovering fun on Rolley trails

Send us your photo showing how you view Maple Ridge or Pitt Meadows, and it could be featured soon

Police tape is shown in Toronto Tuesday, May 2, 2017. Statistics Canada says the country's crime rate ticked up again in 2018, for a fourth year in a row, though it was still lower than it was a decade ago. THE CANADIAN PRESS/Graeme Roy
CRIME STOPPERS: ‘Most wanted’ for the week of June 13

Crime Stoppers’ weekly list based on information provided by police investigators

Canadian Prime Minister Justin Trudeau participates in a plenary session at the G7 Summit in Carbis Bay, England on Friday June 11, 2021. THE CANADIAN PRESS/Adrian Wyld
Canada donating 13M surplus COVID-19 vaccine doses to poor countries

Trudeau says the government will pay for 87 million shots to be distributed to poor countries

Premier John Horgan speaks as provincial health officer Dr. Bonnie Henry, right, and health minister Adrian Dix look on during a press conference to update on the province’s fall pandemic preparedness plan during a press conference from the press theatre at Legislature in Victoria, Wednesday, Sept. 9, 2020. THE CANADIAN PRESS/Chad Hipolito
B.C. officials to provide details on Step 2 of COVID reopening plan Monday

Step 2 could allow for larger gatherings and a resumption of recreational travel

Indigenous Services Minister Marc Miller is seen during a news conference, Wednesday May 19, 2021 in Ottawa. THE CANADIAN PRESS/Adrian Wyld
Indigenous child-welfare battle heads to court despite calls for Ottawa to drop cases

Feds are poised to argue against two Canadian Human Rights Tribunal rulings

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

The Great Ogopogo Bathtub Race has been held in Summerland as a fundraising event. Do you know which Canadian city introduced this sport? (Black Press file photo)
QUIZ: A summer’s day at the water

How much do you know about boats, lakes and water?

Two-year-old Ivy McLeod laughs while playing with Lucky the puppy outside their Chilliwack home on Thursday, June 10, 2021. (Jenna Hauck/ Chilliwack Progress)
VIDEO: B.C. family finds ‘perfect’ puppy with limb difference for 2-year-old Ivy

Ivy has special bond with Lucky the puppy who was also born with limb difference

A million-dollar ticket was sold to an individual in Vernon from the Lotto Max draw Friday, June 11, 2021. (Photo courtesy of BCLC)
Lottery ticket worth $1 million sold in Vernon

One lucky individual holds one of 20 tickets worth $1 million from Friday’s Lotto Max draw

“65 years, I’ve carried the stories in my mind and live it every day,” says Jack Kruger. (Athena Bonneau)
‘Maybe this time they will listen’: Survivor shares stories from B.C. residential school

Jack Kruger, living in Syilx territory, wasn’t surprised by news of 215 children’s remains found on the grounds of the former Kamloops Indian Residential School

Most Read