Alberta man first to be recruited for CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS

Garry Zelasek is the type of guy who would give you the shirt off his back. “He’s always been selfless that way,” says his wife, Michelle. “He’s just a very kind-hearted soul who is always putting other people before him.” That is why after his diagnosis with Amyotrophic Lateral Sclerosis (ALS), it came as no surprise to his family that he would take every opportunity to take part in as many research study opportunities as he could. 

Diagnosed with ALS in 2020, Garry remembers the first few symptoms he experienced. As an oil field worker, he needed the full use of his hands to work the gas wells and pump jacks. “I started losing strength in my right hand – I tried to strengthen it up, but nothing seemed to help. Then I started noticing every once in awhile my right arm would twitch up near my shoulder and then the twitching seemed to get worse as it started to make its way down into my forearm,” he recalls.  

Garry knew something wasn’t right and met with his doctor in Edmonton soon after, with Michelle accompanying him to the appointment and every subsequent appointment. Having seen specialist after specialist Garry eventually visited Dr. Sanjay Kalra and Dr. Collin Luk, and was diagnosed with ALS about eight months after he’d noticed his first symptoms.  

Garry wasn’t going to sit around and wait for what was next – he knew he wanted to make a difference and do all that he could to help researchers find out more about the disease that had now taken away his job and his love of hunting and camping. The same day Garry was diagnosed he said to Michelle – whatever this is – it’s going to be okay. And the two have not looked back since. With three children and five grandchildren, Garry and Michelle’s focus remains supporting one another and being there for their family – including the recent birth of their fifth granddaughter. The couple has been married for 32 years. 

“As a whole we stay very, very positive,” says Michelle. “From the start he has said whatever we have to deal with we’ll deal with together. And since being diagnosed he swore that every trial that would come out he was going to join it because he said if I can’t find a cure for myself, hopefully I can find a cure for someone else.” 

This attitude is what led Garry to CAPTURE ALS. CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS is a Canadian platform that unites patients, physicians, and researchers in academia and industry to study ALS.  

ALS is a heterogeneous disease, meaning the disease varies from person to person. Understanding why ALS is different in each person – or the clinical variability of the disease – is critical to effectively treating it. Led by a team of world-renowned basic and clinical scientists, including Dr. Kalra, CAPTURE ALS has been designed to contribute to the global effort to understand ALS, ultimately increasing clinical trial efficiency and accelerating ALS therapy development. 

CAPTURE ALS provides the systems and tools necessary to collect, store, and analyze vast amounts of information about ALS, creating the most comprehensive biological picture of people with the disease. By openly sharing this information with other worldwide ALS initiatives, Canadians will play a major role in the global effort to understand and treat ALS. 

Garry was the first to be recruited to the project. Earlier this year he joined the team at the University of Alberta for the initial set of tests, which included a blood test, MRIs, and collecting spinal fluid. 

So far Garry has participated in six different studies looking at various aspects of the disease. 

Taking part in CAPTURE ALS seemed like a logical next step for him, “If people don’t join studies like this there’s never going to be advances. We need people to participate so that maybe we can better understand what’s going on – maybe we can one day find something to stop this.” 

Garry says his experience taking part in these studies has been quite effortless and although some tests may be uncomfortable, he is adamant that the benefits are worth it. He encourages others to explore their options and to speak with their doctors about participating in whatever studies they might qualify for and be interested in. “Who knows where it might lead –maybe they’ll be able to find out more about ALS that would help prevent the disease in the first place – maybe even stop it in its tracks. We won’t know unless we try.” 

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 (CIHR), and Snowy Strong and Calgary Flames Foundation. The captureals.ca website is proudly supported by Biogen Canada.

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