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

Terry Mazzei next to a truck after it was struck by lightning, with him inside, on Wednesday afternoon, June 9. He walked away from the incident without injury and the truck sustained only mild damage; a blown front tire and newly broken gas gauge. (Wendy Mazzei photo)
Nanoose Bay man walks away unscathed after lightning strike

VIDEO: ‘We like to think that his dad was watching over him’

This young fledgling white raven was spotted in the Coombs area on May 16. (Mike Yip photo)
Expert says 2 sets of parents producing rare white ravens in mid-Island area

One of the iconic birds is currently recovering at wildlife centre after being rescued

Flowers planted along Highway 19 in downtown Parksville. (Submitted photo)
City of Parksville plants more than 15,000 annual bedding plants

Residents encouraged to take flower photos and post to social media

New COVID-19 cases on Vancouver Island by local health area for the week of May 30-June 5. (B.C. Centre for Disease Control image)
COVID-19 cases drop again almost everywhere on Vancouver Island

Nanaimo had four new cases last week, down from 22 the week before

The Parksville Civic and Technology Centre. Offices will re-open to the general public on June 21. (PQB News file photo)
Parksville’s city hall offices to open again on June 21

Offices will resume pre-COVID hours of operation

At an outdoor drive-in convocation ceremony, Mount Royal University bestows an honorary Doctor of Laws on Blackfoot Elder and residential school survivor Clarence Wolfleg in Calgary on Tuesday, June 8, 2021. THE CANADIAN PRESS/Jeff McIntosh
‘You didn’t get the best of me’: Residential school survivor gets honorary doctorate

Clarence Wolfleg receives honorary doctorate from Mount Royal University, the highest honour the school gives out

Members of the Department of Fisheries and Oceans’ Marine Mammal Response Program rescued an adult humpback what that was entangled in commercial fishing gear in the waters off of Entrance Island on Thursday, June 10. (Photo courtesy Marine Mammal Response Program)
Rescuers free humpback ‘anchored’ down by prawn traps off Vancouver Island

Department of Fisheries and Oceans responders spend hours untangling whale

As stories of the horrors of residential schools circulate after the Tk’emlups te Secwepemc First Nation announced it had located what are believed to be the remains of 215 children, Grand Chief Stewart Phillip of the Union of B.C. Indian Chiefs said he feels a connection with the former students. THE CANADIAN PRESS/Darryl Dyck
2 sides of the same coin: Ex-foster kids identify with residential school survivors

Grand Chief Stewart Phillip says the child welfare system takes Indigenous children from their families

Nathan Watts, a member of the Tseshaht First Nation near Port Alberni, shares his story of substance use, a perspective he said isn’t seen enough. (Photo courtesy of Nathan Watts)
Public shaming, hate perpetuates further substance use: UVic researcher

Longtime addict Nathan Watts offers a user’s perspective on substance use

57-year-old Kathleen Richardson was discovered deceased in her home Wednesday, June 9, 2021. Her death is considered a homicide and connected to the slain brothers found on a Naramata forest road. (Submitted)
Condolences pour in for Kathy Richardson, Naramata’s 3rd homicide victim in recent weeks

Richardson was well liked in the community, a volunteer firefighter with a home-based salon

A person receives a COVID-19 vaccine at a vaccination clinic run by Vancouver Coastal Health, in Richmond, B.C., Saturday, April 10, 2021. THE CANADIAN PRESS/Jonathan Hayward
More than 75% of B.C. adults have 1st dose of COVID vaccine

The federal government has confirmed a boost in the Moderna vaccine will be coming later this month

Airport ground crew offload a plane carrying just under 300,000 doses of the single-shot Johnson & Johnson COVID-19 vaccine which is developed by the Janssen Pharmaceutical Companies at Pearson International Airport during the COVID-19 pandemic in Toronto on Wednesday, April 28, 2021. THE CANADIAN PRESS/Nathan Denette
1st batch of Johnson & Johnson vaccines won’t be released in Canada over quality concerns

The vaccines were quarantined in April before they were distributed to provinces

Prime Minister Justin Trudeau greets campers while visiting McDougall, Ont. on Thursday, July 19, 2018. THE CANADIAN PRESS/Frank Gunn
71% of B.C. men say they’d prefer to go camping with Trudeau: survey

Most British Columbians with plans to go camping outdoors say they’d prefer to go with Trudeau or Shania Twain

The courthouse in Nanaimo. (News Bulletin file)
Nanaimo man, already in jail, found guilty of sexual abuse of sons

Man previously sentenced for sexual interference involving girl in Nanaimo

Most Read