But hope is building, with more progress in the past 10 years than in the previous 60. Ottawa is onboard, with the opening in May of a neuromuscular research centre, based at the Civic campus at The Ottawa Hospital, where muscular dystrophy and ALS will get special attention.
Experts say the exact cause of ALS has been difficult to pinpoint while treatments have been elusive because of the complexity in how the brain interacts with motor neurons to make muscles work on command.
Dr. Ari Breiner is one of seven “clinician investigators” at the centre, which operates out of 5,000 square feet of space that should, in theory, have contact with all 150 or so ALS patient in the area.
“I think it’s very exciting. Ottawa has always had a strength in basic science research in neuromuscular diseases,” he said this week. Indeed, he points to an overall network of about 200 who are working in clinics or labs (university or hospitals) on neuromuscular diseases.
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Though just off the ground, he’s predicting the first clinical trials in Ottawa will begin later in 2018 — probably in collaboration with another centre, probably testing a new drug. (Partnerships are important here because the local patient pool is relatively small and many would not qualify for trials.)
So, why is ALS so tough to crack?
Dr. Breiner says scientists have a decent understanding of the “downstream” effects of ALS, such as a protein buildup on the motor nerves. But the “initiating event,” he says, the original “insult,” is the big question.
“Understanding the biology of the disease is the big thing,” though genetics and environmental factors are thought to be part of the puzzle.
Dr. David Taylor, vice-president of research at ALS Canada, says there have been massive advances in understanding the disease at the molecular level in the past 10 years.
“I am of the belief that we are on our way towards treatments,” hopefully within the next 10 to 20 years, he said this week, predicting there will be multiple therapies to at least slow down the disease.
An immediate roadblock? Funding. He agreed with Peter Sharman’s contention that there is little sustained, direct funding for ALS research from the federal government.
“It’s hard to have a roadmap when you’re working on fumes,” he said. “It’s hard to have a roadmap when you don’t have enough money to build the road.”
It only makes sense that cancer research, for instance, would get more funding, because one in three people have a cancer episode during their lifetime. “It is a case of the rich get richer, in a way, because diseases like cancer have such a large grassroots footprint.”
The ALS Ice Bucket Challenge was enormously successful in 2014, but the funds only went so far, given research is an ongoing, multimillion-dollar endeavour.
“The heart is a pump,” he said by way of example, “the brain is still being understood.”
The Ottawa centre is an important part of the solution, he said. Not only will it provide care from many disciplines (physio, speech therapy, social workers) but it should remove the need to travel to Montreal or Toronto for trials.
ALS Canada funds between $1.5 million and $2 million annually in research, Dr. Taylor said, putting the total of all agencies across the country at roughly $4 million. Even a yearly commitment of $5 million from the federal government, for four or five years, would make a massive difference, he concluded.
“I mean, that’s a rounding error for them.”
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