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

Gwen Spencer Hethey with her uncle and mentor Major Frederick Richardson. (Courtesy of Greater Victoria Sports Hall of Fame)
‘She was a killer’: The Victoria woman who pioneered female sharpshooting

Gwen Spencer Hethey made military men ‘look like turkeys’ says her son

Anita Troop officially turns 100 on Sunday and cards are pouring in from around the world. (Courtesy Marina Miller)
Cards roll in from around the world for West Shore 100 year old

About 100 cards have come for the woman who turns 100 on Sunday

Patrick O’Brien, a 75-year-old fisherman, went missing near Port Angeles Thursday evening. (Courtesy of U.S. Coast Guard)
UPDATE: Search suspended for angler missing between Port Angeles and Victoria

The 75-year-old man was reported missing Thursday evening

A cardboard man bearing Queen Elizabeth II’s royal cipher has been placed in a window at the Royal Theatre for at least several days. (Evert Lindquist/News Staff)
Mysterious cardboard figure appears in Victoria’s Royal Theatre window

The identity of the figure, which was moved there amid cleaning, remains unknown

Black Press file photo
RCMP seek suspect in Vancouver Island-wide crime spree

Crimes stretched from Deep Bay to Qualicum, Ladysmith, Chemainus and Youbou

A small pod of Pacific white-sided dolphins pass by close to shore in Campbell River June 16, 2021. Still capture from video courtesy of Kimberly Hart
VIDEO: Dolphin sunset captured from Vancouver Island shore

Spectacular setting for view of travelling pod of Pacific white-sided dolphins

Bruce Springsteen performs at the 13th annual Stand Up For Heroes benefit concert in support of the Bob Woodruff Foundation in New York on Nov. 4, 2019. (Greg Allen/Invision/AP)
‘Springsteen on Broadway’ clears way for AstraZeneca recipients to attend show

B.C. mayor David Screech who received his second AstraZeneca dose last week can now attend the show

New research suggests wolves can be steered away from the endangered caribou herds they prey on by making the man-made trails they use to hunt harder to move along. THE CANADIAN PRESS/Nathan Denette
Culling cutlines, not B.C. wolves, key to preserving caribou herds: researcher

The government has turned to killing hundreds of wolves in an effort to keep caribou around

Gary Abbott (left) and Louis De Jaeger were two of the organizers for the 2014 Spirit of the People Powwow in Chilliwack. Monday, June 21, 2021 is Indigenous Peoples Day. (Jenna Hauck/ Chilliwack Progress file)
Unofficial holidays: Here’s what people are celebrating for the week of June 20 to 26

Indigenous Peoples Day, Take Your Dog to Work Day, Onion Rings Day all coming up this week

Central Okanagan Grade 12 grads are set to get $500 each after a more than $1 million donation from a Kelowna couple. (File photo)
B.C. couple donating $500 to every Grade 12 student in the Okanagan

Anonymous donors identified as Kelowna entrepreneurs Lance and Tammy Torgerson

Rita Coolidge played the main stage at Vancouver Island Musicfest in 2017. (Black Press file photo)
This year’s Vancouver Island MusicFest to virtually showcase beauty of Comox Valley

Returning July 9 through 11 with more than 25 hours of music performances

British Columbia’s premier says he’s received a second dose of the Oxford-AstraZeneca COVID-19 vaccine. (Twitter/John Horgan)
B.C. premier gets 2nd dose of AstraZeneca COVID-19 vaccine

John Horgan shared a photo of himself on social media Friday afternoon holding a completed vaccination card

A lotto Max ticket is shown in Toronto on Monday Feb. 26, 2018.THE CANADIAN PRESS
No winning ticket sold for Friday’s $70 million Lotto Max jackpot

The huge jackpot has remained unclaimed for several weeks now

Most Read