From the Research Desk – September 2025

Last year, ALS Canada announced its partnership with the Accelerating Medicines Partnership® in Amyotrophic Lateral Sclerosis (AMP® ALS). This September, Dr. David Taylor, Chief Scientific Officer, attended the 2025 Steering Committee meeting in-person, which convened key leaders from the AMP ALS program to review current progress and establish strategic priorities. Shortly after, he participated in activities of the AMP ALS Communications Working Group, with the goal of providing a non-US voice that drives international collaboration. 

Read more

In 2024, ALS Canada joined the inaugural Global MND Research Roundtable in Melbourne, hosted by FightMND, to unite global experts and those affected by ALS/MND in addressing research challenges. Since then, the initiative has sparked ongoing collaboration through international meetings moderated by ALS Canada and FightMND, generating and ranking 51 innovative ideas with input from nearly 100 experts and reaching over 500 researchers worldwide. These discussions laid the groundwork for a strategic follow-up meeting in Australia in September 2025. 

The ALS Clinical Research Learning Institute® (CRLI) is a two-day program designed to provide education and training to individuals impacted by ALS who are interested in clinical research and the therapy development process, organized by the Northeast ALS Consortium (NEALS). Colleen Doyle, Director of Canadian Research at ALS Canada, was asked to participate in the application review process, helping to ensure people living with ALS have meaningful opportunities to participate in and shape the future of research. 

ALS Canada hosts a similar Canadian program called the Canadian ALS Learning Institute (CALI). 

A valuable opportunity to help shape the scientific content of one of the most influential global conferences in the field, Dr. David Taylor has been a member of the Programme Committee for the International Symposium on ALS/MND since 2019. By discussing potential speakers and reviewing hundreds of abstracts from researchers and clinicians hoping to present their work at the symposium, panel members play a critical role in ensuring that high-quality, innovative research is showcased to advance ALS/MND knowledge.  

Centered around the theme “Towards Precision in ALS/MND Treatments,” the PACTALS conference brought together several international experts working to advance ALS and motor neurone disease (MND) research and care. The conference featured key Canadian leaders such as Dr. Angela Genge, Dr. Gerald Pfeffer, and Cathy Cummings. Paula Trefiak, ALS Canada Community Ambassador and SMAC member, also spoke on her lived experiences in a session offering an international perspective on care and support. For ALS Canada, this meeting provided a valuable opportunity to build relationships with ALS neurologists, researchers, and industry in Asian countries, with an eye toward future collaboration. 

The ALS and Related Motor Neuron Diseases GRC is a biennial, five-day international conference that fosters cutting-edge scientific exchange and collaboration through presentations, discussions, and informal networking among researchers of all career stages in a remote, community-building setting. 

The meeting was co-chaired by Dr. Christine Vande Velde, who currently serves on ALS Canada’s Scientific and Medical Advisory Board (SMAC) and has previously served on our Board of Directors. Her leadership and dedication to ALS have been invaluable to the organization and strengthening Canada’s presence in the global research community. 

Dr. David Taylor took part in the ALS Gordon Research Seminar (GRS), providing an overview of the state of ALS research and contributing to the panel discussion Exploring Career Opportunities in Motor Neuron Disease Post-PhD, supporting the next generation of leaders making a difference in the ALS world. 

The seminar was co-chaired by Alicia Dubinski, a trainee funded by a past ALS Canada research grant. 

With support from ALS Canada, current and former CALS Chairs have published an article, Integrating genetic testing into management of all patients with amyotrophic lateral sclerosis: a critical juncture, in the Canadian Medical Association Journal (CMAJ). The publication emphasizes the importance of equitable access to genetic testing for patients with ALS across all provinces and territories to improve diagnosis, allow for early genetic counselling, and ensure early intervention with new targeted therapies if indicated. 

Following the National ALS Research Summit, ALS Canada members across the organization held a series of meetings with researchers, clinicians, ALS organizations, and people affected by ALS across the country to build support for the organization’s 2025 federal pre-budget submission. Building on the consensus reached at the Summit, the submission calls on the federal government to invest $50 million over five years in the Canadian Collaboration to Cure ALS, a national strategy aimed at advancing key clinical ALS research initiatives across Canada. Strengthening relationships and outreach across the country are playing a crucial role in building strong, nationwide support for increased federal investment, helping to demonstrate the urgency and collective commitment behind ALS research. 

The Ottawa NMD 2025 conference showcased recent breakthroughs in basic and translational research as well as clinical discoveries in neuromuscular disease. Research Team member Colleen Doyle presented on ALS Canada’s work, emphasizing the growing visibility and impact of ALS research within the broader neuromuscular community, and spotlighting funding opportunities available to researchers.  

The conference also featured presentations from several ALS Canada-funded investigators, showcasing the strength and reach of ALS contributions to the field. 

The CALS network came together to discuss important topics such as advancing ALS research and care in Canada through collaborative initiatives like CAPTURE ALS and the Canadian Neuromuscular Disease Registry (CNDR), refining clinical trial infrastructure, addressing challenges in genetic testing and regulatory pathways, and aligning on evidence-based treatment practices.  

In September, SMAC members met once again to strengthen ALS Canada’s future programs and funding, guided by ALS researchers, clinicians, and people with lived experience.  

ALS Canada’s commitment to Canadian researchers extends beyond our Research Program. As part of our engagement efforts, we visited ALS research labs in Ottawa this past September, where we had the opportunity to connect directly with funded researchers and gain insight into their work and lab environments. 

Read more about projects funded.  

The ALS Research Community Sessions, hosted by ALS Canada, are open to ALS researchers across the country, striving to foster collaboration, facilitate knowledge sharing, and strengthen the ALS research community. In September, Dr. David Taylor presented on Media vs. Data: Responsible Communications in the ALS Ecosystem.  

The presentation highlighted the importance of clear and responsible communication, balancing trustworthy information with the complexity of scientific research, and offering hope to our community.