Driving Discovery: From the Ice Bucket Challenge to unprecedented Canadian platforms

Ten years ago, Canada was falling behind in studying people living with ALS.  

The biggest, most impactful way to study the complexity and variability of ALS is through observational studies that collect information and samples from people living with ALS. The disease is known for its heterogeneity, meaning it varies significantly from person to person in terms of symptoms, progression, and possibly underlying biology. This makes it challenging to pinpoint the exact causes of ALS and find effective treatments. However, through observational studies, researchers come closer to understanding the diverse genetic, environmental, and molecular factors that may contribute to ALS, and gain insights into finding novel treatments. 

In 2014 in the United States, observational studies like Answer ALS and ALS TDI’s Precision Medicine Program (PMP), now known as ALS Research Collaborative (ARC), were recruiting participants and expanding, with the potential to provide critical insights to research. Despite ALS Canada’s outreach efforts to engage Canadian clinical sites, it was not possible to secure participation for these studies in Canada. 

Thus, there was a pressing need to bring together the Canadian research and clinical community to create opportunities for people living with ALS to participate in observational research close to home. Yet, compared to the U.S., Canada faced significant limitations in ALS research funding and capacity, restricting the scale and reach of these efforts. 

But Canada had already begun laying the foundation for something big. For more than 30 years, the ALS Canada Research Program has been supporting Canadian researchers through foundational grants, investing in early-stage ideas and building momentum for larger initiatives. These initial investments often laid the groundwork for follow-up funding, enabling promising projects to scale and evolve into impactful, long-term research efforts. Among researchers supported was Dr. Sanjay Kalra, from the University of Alberta, a globally respected imaging expert. His early work supported focused on exploring neuroimaging as a potential biomarker for ALS and uncovering the insights that advanced imaging could offer into the disease. (You can read more about the topic in our Inside the Science edition.) 

Then, in 2014, the ALS community was extremely fortunate to receive donations from the Ice Bucket Challenge. These funds allowed ALS Canada, in partnership with Brain Canada, to support the Canadian ALS Neuroimaging Consortium (CALNISC), a multidisciplinary team of experts across multiple academic centres, led by Dr. Kalra. The funding was essential for the network to initiate a Canadian observational study (CALSNIC-1), collecting demographic, clinical, neuropsychological, and imaging data from people living with ALS, with the goal to discover MRI-based biomarkers that could speed up diagnosis, improve our understanding of disease biology, and enhance clinical trial insights.  

As of 2025, CALSNIC includes two major studies with a combined enrollment of over 200 participants living with ALS and 150 healthy controls. It remains one of the few multi-site, longitudinal neuroimaging initiatives in ALS research worldwide. The project has generated multiple publications, offering valuable insights to the global effort to understand and treat the disease.

But CALSNIC was just the beginning. While brain imaging, so-called dry biomarkers, offers powerful insights, the full picture of ALS may lie in what flows through the body. By combining imaging with wet biomarkers like blood, cerebrospinal fluid, and other samples from the same individuals, we can unlock a deeper understanding. That’s why the launch of the Clinical Biological Imaging and Genetic (C-BIG) Repository at the Montreal Neurological Institute in 2021 was a game-changer. As one of the world’s largest Open Science biorepositories, C-BIG opened the door to a transformative collaboration, being able to store biological samples, combined with imaging data to accelerate ALS discoveries. 

In the years following the initiation of the CALSNIC study, Canada’s leading ALS researchers came together to envision how to add these wet biosamples and genetic information to the platform. It was then that the Comprehensive Analysis Platform to Understand, Remedy and Eliminate ALS (CAPTURE ALS), a new Canadian observational study led by Dr. Kalra, began to take shape.  

To set CAPTURE ALS up for success, ALS Canada provided support to hire a Project Manager in 2019, and an Executive Committee was formed to develop this new, enhanced initiative. The study would be driven  with the expertise and collaboration of several renowned experts across Canada.    

With national collaboration at its core, CAPTURE ALS aimed to unlock the biological complexity of the disease and empower Canadians living with ALS to actively shape the future of research. By collecting detailed data like genes, neuroimaging brain scans, disease progression, and other biological samples, scientists would be able to build a unique ‘fingerprint’ for each participant. This work would help uncover clues about how ALS works and move us closer to personalized treatments. Due to the foundational work of Dr. Kalra, one of the biggest differentiators of the platform from other observational studies outside Canada is the imaging collection. 

CAPTURE ALS officially launched in 2021, through a Brain Canada Platform Support Grant (PSG), with support from ALS Canada and partners at Alnylam Pharmaceuticals and Regeneron. Recruitment began in four Canadian cities, and the very first person to join the study was Garry Zelasek. His contribution would be incredibly valuable for years to come. You can read Garry’s story here. 

From the start, CAPTURE ALS has been shaped by the voices of people living with ALS, along with their families, friends, and communities. Their experiences and insights are at the heart of the initiative. To ensure this, the study includes a Participant Partner Advisory Council (PPAC), which plays a key role in guiding research priorities, recruitment strategies, and engagement practices. 

Now in 2025, with almost complete enrollment and data release approaching, the initiative has the potential to significantly contribute to our understanding of the disease. Soon, CAPTURE ALS will be able to provide researchers with high-quality biosamples and clinical data. By storing samples collected in an Open Science repository like C-BIG, this database of information will be impactful well into the future for researchers worldwide and other ALS initiatives. As of now, there are already plans to share the data with Project MinE, the Neuroimaging Society in Amyotrophic Lateral Sclerosis (NiSALS), and hopefully with other unique globally collaborative initiatives such as the growing AMP ALS initiative or the Longitude Prize on ALS.  

But the journey isn’t over yet. Due to limited funding and capacity, CAPTURE ALS was unable to recruit from every clinic across Canada, leaving valuable research contributions behind. There are efforts to obtain new grant funding to recruit an additional 200 participants and significantly expand sites across Canada, with added changes to the protocol to reflect the evolution of the field in recent years, such as the addition of electrophysiology measures. Multiple Canadian ALS organizations and pharmaceutical companies are backing applications for new support, with a commitment to keep CAPTURE ALS going in some capacity, while it continues to have impact.  

In addition, ALS Canada has consistently pushed for government support to expand the initiative, but now, there’s growing hope for what’s ahead. In June 2025, ALS Canada hosted a National ALS Research Summit, once again bringing together key leaders in the ALS community. The sentiment in the room was clear: we need to create opportunities so every person living with ALS can participate in research. Backed by this new, unified voice, ALS Canada has submitted our 2025 pre-budget submission calling the federal government to invest $50 million over 5 years for a strategy called the Canadian Collaboration to Cure ALS, to support CAPTURE ALS and other key ALS research initiatives across the country. 

Through the research collected by CALSNIC, we have important insights into tracking progression and understanding how ALS advances in the brain. With the expanded scale and depth of CAPTURE ALS, the potential to revolutionize our understanding of the disease is even greater. These initiatives, made possible through generous donations to the ALS Canada Research Program and our partnership with Brain Canada, are not only advancing science but also creating meaningful opportunities for Canadians living with ALS to participate in research. As we look ahead, we remain hopeful for the discoveries to come and for the continued impact of CAPTURE ALS in the field. 

In our blog series, Driving Discovery, we showcase stories of the ALS Canada Research Program. Thanks to generous donations, our funding has provided foundational support in several areas of ALS research and clinical care.