From the Research Desk highlights recent activities and accomplishments from the ALS Canada Research Team, and what is happening in the ALS research world.
By actively engaging with the global ALS community, supporting ALS research advancements, and providing knowledge to people affected by ALS, we remain committed to a world free of ALS.
In December, Dr. David Taylor, Chief Scientific Officer at ALS Canada, participated in the 36th International Symposium on ALS/MND, a three-day event recognized as the world’s largest annual conference focused on ALS/MND. Annually, the symposium brings together more than 1,000 global experts to advance research and improve understanding and management of the disease.
Dr. Taylor also served a sixth year on the Programme Committee and co-chaired a Symposium session on Cell and Organelle Analyses.
From November 29 to December 2, ALS Canada members attended the 2025 Alliance Meeting and Allied Professionals Forum, by the International Alliance of ALS/MND Associations, co-hosted by ALS Canada and the ALS Association. This global gathering united researchers, healthcare professionals, advocates, and people affected by ALS from over 30 countries to share knowledge, foster collaboration, and accelerate progress in care, research, and advocacy. Read more.
For the fifth straight year, ALS Canada has been asked to provide an overview of the scientific programme of the International Symposium to the individuals attending as Patient Fellows. This is a tremendous privilege and annual highlight for the Research Team, and a fun opportunity to talk about the most exciting research sessions and lectures.
ALS Canada proudly serves as the sole non-U.S.-based member of the Programmatic Panel for the U.S. Department of War, Congressionally Directed Medical Research Programs, ALS Research Program. In this role, ALS Canada supports the evolution of programs and peer review of applications, helping to guide an annual $40 million USD investment in ALS research. One of the highlights of this role involves the opportunity to hear from and provide feedback on the progress of ongoing studies funded by the program.
ALS Canada is honoured to serve on the five-member Scientific Review Group (SRG) for the GoALS initiative in The Netherlands. GoALS is one of the largest initiatives in ALS research history, combining cutting-edge genetics work, human cellular models, and world leading clinical trial innovations into an unprecedented machine to advance new understanding and treatment of ALS. Serving on the SRG involves a biannual review of progress and feedback to support the ongoing success of GoALS.
The SRG reports to Stichting ALS Nederland and ALS patiëntenvereniging.
ALS Canada presented an update on the Global ALS/MND Research Roundtable Initiative, co-led with FightMND from Australia. The program featured presentations by leading experts on topics such as biomarkers, asymptomatic ALS/MND studies, and human ALS laboratory models. Every session was aligned with the initiative’s mission to drive collaboration and address critical gaps in the ALS/MND research ecosystem.
The Research Directors Forum (RDF) plays a key role in aligning global ALS/MND research priorities, identifying gaps, assessing funding impact, and fostering an inclusive, collaborative research network. ALS Canada is proud to be part of the Forum and to support global initiatives. The December meeting focused on impactful ongoing and forthcoming initiatives that are collaborations of global ALS/MND organizations, facilitated through the work of the Alliance.
As a commitment to our partnership with the Health Charities Coalition of Canada (HCCC), Colleen Doyle, Director, Canadian Research at ALS Canada, participated in the HCCC Fall meeting with the Canadian Institutes of Health Research (CIHR). The meeting focused on collaborative approaches to boost health research impact, with discussions covering strategies to drive innovation and commercialization, improve clinical trials through better funding and standards, and align on shared priorities.
In October, ALS Canada, in partnership with Brain Canada, hosted a Donor Appreciation Event to celebrate a decade of collaboration and to express gratitude to our donors. Together, ALS Canada and Brain Canada have invested over $32 million in ALS research, funding more than 107 grants and initiatives like CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS, a groundbreaking platform that accelerates discovery through data sharing and collaboration. The evening featured an engaging panel discussion on the initiative with researchers, clinicians, and participants, showcasing the profound impact that donor contributions have in driving progress toward a world free of ALS.
Read more the story behind CAPTURE ALS here.
ALS Canada participated in the first All-Party ALS Caucus Meeting of 2025. Alongside Daniel Knight, ALS community member and researcher, ALS Canada briefed members on the current ALS research landscape and presented the pre-budget submission for the Canadian Collaboration to Cure ALS. The meeting served an important role in building new champions in government for this transformational opportunity to advance ALS research and provided a venue for discussion on how Parliamentarians can play a pivotal role in advancing toward success.
On October 1 and 2, people living with ALS, caregivers, researchers, clinicians, and ALS organizations from across the country gathered in Ottawa for the Canadian ALS Community’s Advocacy Day on Parliament Hill, united in the call on the federal government to invest in the Canadian Collaboration to Cure ALS.
ALS Canada was privileged to provide brief presentations of the exciting outcomes from the International Symposium on ALS/MND and the global clinical trial landscape at an evening research event hosted by the ALS Society of Quebec. Seven expert ALS researchers/clinicians from Quebec joined for the Q&A portion, with questions ranging from risk factors to clinical trials and more.
In October, the Research Team attended CDA NXT, Research Canada’s National Conference. Through presentations and panels, the event discussed the future of health research and innovation, fostering collaboration between researchers, policymakers, and health organizations for impactful change.
At the fourth CALS meeting of the year, supported by ALS Canada, clinicians from across the country came together to discuss key issues in ALS care, clinical trials, and drug reimbursement.
In November, SMAC members met once again to strengthen ALS Canada’s future programs and funding, with guidance from ALS researchers, clinicians, and people with lived experience.
The ALS Research Community Sessions, hosted by ALS Canada, are open to ALS researchers across the country, aiming to foster collaboration, facilitate knowledge sharing, and strengthen the ALS research community.
In November, we heard from Dr. Gerald Pfeffer and Dr. Victoria Hodgkinson. The session featured updates on CAPTURE ALS, a national platform that collects multi-dimensional data to accelerate ALS research, and the Canadian Neuromuscular Disease Registry (CNDR) ALS Registry, which harnesses patient-reported and clinical data to strengthen research collaborations and support trial readiness in Canada.
Did you miss the latest ALS Canada Clinical Trials Unboxed webinars? Check out the recordings on our YouTube Channel:
ALS Clinical Trials Unboxed: Regeneron (ALN-SOD)
ALS Clinical Trials Unboxed: Prof David Berlowitz (3TLA), Three Titration of Non-Invasive Ventilation
2025 DISCOVERY GRANT PEER REVIEW MEETING
The ALS Canada-Brain Canada Discovery Grants, the largest competition in partnership with Brain Canada, are designed to support teams of multiple investigators and encourage multidisciplinary teams with individuals from outside the field who can combine their expertise in novel or innovative ways.
In October, a peer review meeting was held for the competition, where over 12 ALS experts from around the globe made recommendations for funding.
TRAVEL AWARDS
Through the ALS Canada Research Program, we were pleased to offer three Travel Awards to Canadian researchers and clinicians, supporting their attendance at the International Symposium on ALS/MND, fostering them to present their work on an international stage. These awards are vital in fostering collaboration and amplifying Canadian research contributions.
What’s next….
ALS Canada is excited to launch a revamped Career Transition Award in early 2026. This award aims to foster the next generation of ALS researchers by providing crucial funding for both salary and research costs.
Stay tuned for more details!
Did you miss our latest Driving Discovery blog on the story behind CAPTURE ALS?
Did you miss our latest Inside the Science blog on biomarkers and ALS?
Have any questions about ALS research or clinical trials? Stop by our monthly ALS Research and Clinical Trials 101 Q&A Drop-In session, where ALS Canada’s Research Team can answer your questions.
Donations provide crucial services and information to people living with ALS and allow us to invest in research and advocacy dedicated to improving quality of life.