Driving Discovery: decades of fuelling ALS research across Canada

In this interview with members of the ALS Canada Research Team, David Taylor, Chief Scientific Officer and Colleen Doyle, Director of Canadian Research, both discuss the ALS Canada Research Program and building the foundation of ALS discovery in Canada.                

Colleen: Since the beginning, the ALS Canada Research Program has played a critical role in shaping and advancing ALS research here in Canada. It’s the only dedicated source of national funding for ALS research, so the program has been essential in driving progress in the field. Over the years, through sustained and strategic funding, we’ve been able to support foundational work that has led us to where we are today – with multiple disease-modifying therapies approved in Canada, a deeper understanding of the genetic and molecular aspects of ALS, and a much more globally connected and collaborative research community. 

Dave: ALS Canada has done a lot of things to transform the Canadian ALS research landscape. We have funded major national initiatives, such as the Canadian Neuromuscular Disease Registry (CNDR), support to the Canadian ALS Research Network (CALS), and CAPTURE ALS. We have also been able to fund great peer-reviewed research across the country through our Research Program. If a great idea comes up anywhere in the country, we’re going to be able to find it and support it, contributing to the global effort on ALS research. 

Colleen: The Research Program has been essential in nurturing the next generation of ALS researchers and clinicians, bringing in the next big ideas for ALS. We have dedicated funding streams for PhD candidates, as well as postdoctoral and clinical fellows, helping launch and sustain promising careers in ALS. Programs like the Clinical Research Fellowship and Career Transition Award are great examples of this, with many of today’s leaders in the clinical and fundamental research space being past recipients. In addition to research support, we also focus on building community. Events like the ALS Canada Research Forum help integrate early-career researchers into the field by providing opportunities for networking and collaboration across the Canadian ecosystem and internationally.

Colleen: We are very intentional about how we approach research funding. Every application we receive goes through a rigorous, transparent, and peer-reviewed process. We engage leading experts in the field to evaluate proposals based on their relevance, feasibility, and potential global impact on the disease. By keeping the program highly competitive and grounded in expert review, we ensure that donor dollars are used as effectively as possible to move us closer to a world free of ALS.

Dave: We are very adamant that our donor dollars are stewarded effectively, and we’ve been evolving our peer-review process over many years. We also strive to be knowledge leaders, not just through funding research, but by turning donor dollars into broader impact. This includes serving on advisory boards, peer reviewing for other organizations, and helping to influence where donor dollars go in other countries. Not only are we helping to steward what’s happening here in Canada, but we’re also helping to provide Canada’s influence on the rest of the world and how they fund ALS research.

Dave: Absolutely. ALS research is underfunded here in Canada, and we want to make sure that donor dollars go as far as possible. It’s a disease that I think we absolutely can make a huge difference with every dollar that comes in. We are certain that more funds are going to help us accelerate to a time when we have a world free of ALS.

Colleen: Yes, ALS research is underfunded—not just in Canada, but around the world, especially when measured against the complexity and urgency of the disease. Canada has world-class researchers and innovative ideas, but too often promising projects go unfunded simply due to a lack of resources. Increased donations would absolutely allow us to expand our support for cutting-edge science and build long-term capacity across the country. At the same time, we also believe greater public awareness can spark broader engagement, from government, the private sector, and the next generation of scientists. With more support and visibility, we can turn today’s momentum into tomorrow’s breakthroughs.

Colleen: Yes, the Research Program supports investigators from coast to coast, and we are deeply committed to fostering national collaboration. We do this through a variety of initiatives, including the ALS Canada Research Forum, bi-monthly virtual community sessions, a monthly research newsletter, support for the Canadian ALS Research Network (CALS), and strategic partnerships. By building and sustaining a cohesive national network, we aim to strengthen connections, drive collaboration, and accelerate meaningful progress.

Dave: If there is great research happening anywhere in the country, they can apply to our programs. We have been able to fund research in most provinces across Canada, and we are connected to people in all provinces to be able to move forward the impactful research happening there. For many years, we have brought together the Canadian community through our ALS Canada Research Forum – also bringing people from outside of Canada to increase collaboration between global ALS researchers.

Colleen: People living with ALS and their families are at the heart of the ALS Canada Research Program. They serve on our Scientific and Medical Advisory Council (SMAC), observe our grant review process, and help shape how we communicate research. People affected by ALS are also actively involved in key events like the National ALS Research Summit and the ALS Canada Research Forum. I think their voices keep our work focused on what really matters, which is making a difference in people’s lives.

Dave: The voices of people affected by ALS are the most important. We feel that people who are affected by the disease should be integrated in all research initiatives to make sure that the research being done is not tone deaf to their needs and desires. This is why we also have a Canadian ALS Learning Institute (CALI), where we’re trying to help people become ambassadors so that they can go out and influence research happening not only here in Canada, but around the world. Members of the ALS community are the people that we’re doing the research for, so it is imperative that their voice is thoughtfully integrated into the effort. 

Dave: One of the great things at ALS Canada is that they’ve really allowed our research team to branch out. Not only do we have a Research Program that funds the best research in Canada, but our team is also interconnected with research that is happening everywhere in the world. Every donor dollar is leveraged many times over by influencing what’s happening in other areas. We are very well connected across both Canadian researchers and those working in other areas and countries around the world. We really believe that a collective effort around the world will ultimately get us to a world free of ALS. 

Colleen: One of the biggest challenges remains the complexity and heterogeneity of ALS—there likely is no one-size-fits-all cause or cure. But that complexity also presents opportunity. Advances in genetics, biomarkers, and personalized medicine are opening new doors for targeted therapies. The recent approval of Qalsody (tofersen) for SOD1-ALS is a powerful example of what’s possible. With increased investment, coordinated national strategies, and continued global collaboration, we can build on this momentum and accelerate progress toward transformative treatments for all forms of ALS.

Dave: The challenges for ALS are simple to relay. It’s a very complex disease that people are working very hard on around the world to try to fix, and it’s underfunded. To be able to fix the disease, we are going to need more funds. And we are going to keep pushing and get there one day. We are going to get there sooner than one day. We know this because we have been able to do this with one type of ALS. There is a subset of people who are living with a particular genetic variant called SOD1, SOD1-ALS. And there is a particular therapy [Qalsody] that is making a game-changing difference for those individuals. Some of them have been stabilized for many years, when we would have expected them to progress. Others have even gotten small gains back in function. So, what does this all tell us? It tells us that you can treat ALS effectively if you hit the right people with the right treatment at the right time, and we just have to figure out what that is for everyone else. I think the biggest thing is that we need more funds to be able to really figure out what those targets are for those individuals. It will truly be a wonderful day when we can reach that world free of ALS.

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.