Meet nine Canadian researchers moving ALS research forward with the help of the ALS Canada-Brain Canada Discovery Grant Program

In March 2023, the ALS Society of Canada and Brain Canada announced the latest round of Discovery Grant recipients from their 2022 research grant competition.

With support from SLA Québec and the Dr. Jean-Pierre Canuel Fund, nine Canadian researchers and their teams received a total of $1,475,000 in funding to fuel innovation that will accelerate our understanding of amyotrophic lateral sclerosis (ALS) and identify pathways for future therapies. 

Projects were selected following a competitive peer-review process, in which international ALS experts considered the merit of the applicant, the quality of the project, and the potential to advance the field of ALS research. In 2022, the Discovery Grant program introduced two grants of $300,000, an increase from the traditional amount of $125,000, as part of the partnership’s efforts to support more ambitious projects.

Real hope for Canadians living with ALS

For Canadians living with ALS, like Paula Trefiak, this funding represents a source of hope.  

Paula has a familial variation of ALS, and she has lost 27 family members to the disease. Since 2018, she has served as a Community Ambassador for ALS Society of Canada, as well as on its Scientific and Medical Advisory Council (SMAC). 

“This partnership means a lot,” she said. “We have brilliant Canadian minds working on these innovative projects. It’s incredible to see their ideas end up in trials or give us more information about how ALS works so we can develop treatments. That’s really important to me, and of course, to my family.” 

Paula has personal experience with the potential of ALS research. For the past five years, she has been receiving tofersen, a therapy designed for people with SOD1 gene mutations, through a clinical trial in Montreal and now through the Calgary ALS clinic. The treatment was recently approved by the FDA in the United States but is not yet approved by Health Canada, though it can be accessed via a Special Access Program. Tofersen was developed after many years of work to understand and target the precise biology of SOD1-ALS, which represents a small proportion (~2%) of ALS cases. That same understanding hasn’t yet been achieved for most people with ALS. 

So far, she says, the treatment seems to have slowed her disease progression and even reversed some of her symptoms.  

“I’m very excited for people with other variations of ALS to see the same success that I have,” she said. “And I have no doubt that Discovery Grant research will help that.” 

Canadian research with global impact 

Canadian ALS research is known for punching above its weight, thanks in part to a history of bold funding through the Discovery Grant program.  

“These exciting projects led by teams across Canada are contributing to global scientific discovery,” says Brain Canada President and CEO, Dr. Viviane Poupon. “Our unique partnership with ALS Canada has the potential to lead to improve diagnosis and treatment for people living with ALS, and it’s something that we are very proud of.”  

Since 2014, ALS Canada’s partnership with Brain Canada has resulted in more than $25 million being invested in ALS research that has helped further our understanding of the disease. 

“The Discovery Grant program continues to support critical Canadian research that contributes to the global effort on understanding and treating ALS. Over the past 15 years, many discoveries made through this program have provided a foundation for studies that are impacting humans today, whether through clinical trials or critical initiatives like CAPTURE ALS,” says Dr. David Taylor, Vice-President, Research and Strategic Partnerships, ALS Canada.  

Meet This Year’s Discovery Grant Recipients 

Over the coming months, we will share more about each of the research projects, going behind the science to find out how–and why–some of Canada’s top ALS researchers do what they do. Check back for new stories regularly.