A central Alberta man diagnosed with ALS was the first in Canada to join the country’s most extensive research initiative to better understand and treat the deadly disease.
Garry Zelasek, of Morningside in Lacombe County, who was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in December 2020, volunteered to participate in CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS which unites patients, physicians, and researchers in academia and industry to study ALS.
So far Garry has participated in six different studies looking at various aspects of the disease and has started undergoing a series of blood, speech, muscle, cognition, and cerebral spinal fluid tests, CT scans, and other imaging.
“I’m trying to help out as much as I can. Without people getting into these studies, there will never be a cure,” said Zelasek who has more tests scheduled this summer.
As an oil field worker, Zelasek was diagnosed with ALS about eight months after he started losing strength in his right hand and started experiencing muscle twitching in his arm.
Also known as Lou Gehrig’s disease, ALS gradually takes away a person’s ability to walk, talk, swallow and breathe.
His wife Michelle said life expectancy is two to five years, but there have been people who have lived longer, so they are hopeful. So far the progression of Garry’s disease has been slow.
Michelle said she can understand how some people may prefer to focus on living their lives instead of undergoing tests.
“But I hope and pray with Garry doing this, and trying to reach out to others, that others will find it in time heart to do some of these tests. The only way we’re going to find a cure is by doing the studies and allowing scientists to figure it out,” Michelle said.
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Understanding why ALS is different in each person is critical to effectively treating it, and CAPTURE ALS provides the systems and tools to collect, store, and analyze vast amounts of information about ALS, creating the most comprehensive biological picture of people with the disease.
Dr. David Taylor, vice-president of research with ALS Society of Canada, said this academic initiative is Canada’s piece of the global puzzle.
“It’s an incredibly complex disease that is incredibly underfunded. We want to be able to pool the data with other countries to get a better picture of ALS,” Taylor said.
“In Canada, at any given time, there are about 3,000 people living with ALS. Unfortunately, as a terminal disease there are about two or three people diagnosed every day, and two or three people will pass away every day.”
He said the goal of the research is to be able to put people with ALS on a treatment regiment that is specific to their ALS.
“Cancer is already there. Someone could be diagnosed with a specific type of prostate cancer, or a specific type of stomach cancer, and they’ll be put on a specific treatment regiment for their type of cancer. We’re not anywhere near that yet.”
CAPTURE ALS was launched in March and recruitment has been underway in Edmonton, Montreal, Quebec City and Toronto. Current funding will allow about 100 patients to participate in the research.
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CAPTURE ALS has been made possible by the Canada Brain Research Fund, an innovative arrangement between the Government of Canada (through Health Canada) and Brain Canada Foundation, ALS Canada, Alnylam Pharmaceuticals, Regeneron, Canadian Institutes of Health Research, and Snowy Strong and Calgary Flames Foundation. The captureals.ca website is supported by Biogen Canada.
szielinski@reddeeradvocate.com
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