'It could mean a cure': Cautious optimism for groundbreaking ALS research at Western

Mathew Brown wheels around the main floor of his house into a front room that’s been fashioned into a bedroom. He gets fitted for his BiPAP, or a machine that helps him breathe.

“I was told by my doctor that if I didn’t use my BiPAP for a day and a half I would pass away,” said Brown.

The 55 year old was diagnosed with ALS just over two years ago. His progression had been moderate until a bout of pneumonia last year set him back.

“When I came home I was literally knocked right off my feet because I was no longer able to walk,” he explained.

Brown said he’s hopeful for future ALS patients after news this week of research at Western University of a potential cure for ALS.

“It could mean a cure. It could mean that, you know fast-forward to maybe ten years from now, everybody gets a test and gets their genome checked. You could actually maybe in advance be taking the drugs to maybe be able to stop the initial onset, so it’s huge,” he said.

The work of Dr. Michael Strong and his team at Schulich School of Medicine and Dentistry discovered that targeting an interaction between two proteins present in ALS-impacted nerve cells can halt or even fully reverse progression of the disease. Brown’s wife Cathy Brown said the ALS community has been praying for a breakthrough like this.

“We need something that can stop this disease in its tracks and possibly even reverse the effects,” said Mrs. Brown. “‘Cause right now, the very few drugs that we have for ALS don’t stop it. They barely slow it down.”

ALS is a degenerative condition that impairs nerve cells responsible for muscle control. Average life expectancy after diagnosis is two to five years.

According to the ALS Society of Canada, about 4,000 people at any given time in Canada are living with ALS.

ALS Society VP of Research and Strategic Partnerships David Taylor is careful not to raise anyone’s hopes too high.

ALS patient Matthew Brown sports a T-shirt from his ALS awareness campaign. (Bryan Bicknell/CTV News London)

“You know we have to have cautious optimism that this is something that might eventually reach clinical trial and might have some effect in individuals,” he said. “And any time something like that happens it’s an exciting day, but we definitely see these things from time to time, or pretty regularly, and we hope that they will translate into something effective for people.”

As for Brown, he continues his own work advocating for ALS research and awareness, including an ALS awareness T-shirt campaign he’s involved in. 

“Each day is pretty tough. Weeks are pretty tough. You know I try my best, I have a great family behind me, support team, and I’m lucky for that,” said Brown.

June is ALS Awareness Month, with 22 ALS walks taking place across the province, in addition to a virtual event.

London’s Walk to End ALS is scheduled for June 22 at Springbank Park. The fundraising goal is $130,000.