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.
Dr. David Taylor, Chief Scientific Officer at ALS Canada, was a featured speaker at the FightMND Scientific Seminar, addressing the vital need to both champion and challenge the global ALS/MND clinical trial ecosystem. With years of experience representing ALS Canada at global conferences and international panels, and by forging relationships with top ALS researchers worldwide, Dr. Taylor has been instrumental in the ALS research conversation. The presentation aimed to provide a snapshot of the important work being done around the world to optimize clinical trials, with the hope of continuing the global collaborative efforts to advance ALS research.
In 2024, ALS Canada participated in a Global MND Research Roundtable, held in Melbourne, Australia by FightMND. The roundtable aimed to connect some of the world’s leading minds in ALS research and people affected by ALS/MND, to tackle barriers hindering progress. In the months following, the work from this event has continued through 11 global Zoom calls, moderated in partnership by ALS Canada and FightMND. Across the calls, 51 novel ideas on how to accelerate global ALS/MND research were individually ranked and discussed by nearly 100 researchers, clinicians, and industry members, representing several countries from around the world. Engagement on these ideas has reached over 500 ALS researchers in more than 50 countries. Important topics addressed included research data sharing, biobanking, asymptomatic ALS/MND research, preclinical animal and human models, biomarkers, and clinical trials. The next steps will lead to a second meeting in Australia in September 2025, where a strategy to move the top ideas forward will be created by a global group of experts and people affected by ALS/MND.
ALS Canada is honoured to serve on the five-member Scientific Review Group for the GoALS initiative in The Netherlands. GoALS is one of the largest initiatives in ALS research history, combining cutting-edge genetics work, top-notch human cellular models, and world leading clinical trial innovations into an unprecedented machine for discovery and development of new ALS understanding and treatment. In May 2025, the ALS Canada Research Team had the privilege to participate in their second annual meeting in Zeist, the Netherlands, to help provide direction and support for the initiative’s continued success. It is hoped that more public information will be available in the year ahead, to better highlight the initiative’s progress.
ALS Canada is pleased to be asked to support a very exciting new biomarker discovery and validation initiative in Belgium and the Netherlands, called PLUS-ALS, as part of their Scientific Review Board. Public information is not yet available but stay tuned for more details.
ALS Canada is proud to be the sole non-U.S.-based member of the Programmatic Panel for the U.S. Department of Defense, Congressionally Directed Medical Research Programs, ALS Research Program. In this role, ALS Canada will support the evolution of the programs and peer review of the 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 ongoing studies funded by the program, which was the purpose of the Spring In-Progress Review. Additional work on this panel is ongoing through the summer of 2025, and we look forward to providing updates in the months ahead.
ALS Canada was asked to participate in a news article by CBC, exploring claims for an alternative and off-label treatment option for ALS in Saskatchewan. Dr. David Taylor is featured offering an important perspective from the research community. Read the full article here.
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 group aims to collaborate on an initiative of global importance to the field. Stay tuned for more details in the months ahead.
INDUSTRY RELATIONSHIPS
ALS Canada invests in strategic connections to highlight Canada as a top destination for clinical trials and marketing of treatments. In the second quarter of 2025, the organization has interacted and attended meetings with several companies invested in ALS clinical development from late preclinical stages to Phase 3 clinical trials. In collaboration with the Canadian ALS Research Network (CALS), the ALS Canada Research Team takes every opportunity to highlight Canada as an ideal destination for industry to bring their studies.
ALS Canada was thrilled to bring together key representatives of the Canadian ALS community, hosting a National Research Summit to discuss ALS research priorities and advance funding in Canada.
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.
With a full day of discussions, SMAC members came together to strengthen ALS Canada’s future programs and funding, guided by 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. Through these sessions, we aim to provide opportunities for researchers to connect and learn about advances being made in the field to better understand and address ALS.
In March, we heard from Dr. Maria Vera Ugalde, McGill University and Dr. Christopher Pearson, University of Toronto. In May, Dr. Jonathan Ling, Johns Hopkins School of Medicine and Dr. Stephanie Moon, University of Michigan, presented their work to the Canadian community.
Did you miss the latest ALS Canada Clinical Trials Unboxed webinars? Check out the recordings on our YouTube Channel:
ALS Canada funds research through a rigorous, transparent, and peer-reviewed process. By engaging leading experts in the field to evaluate proposals, we ensure that donor dollars are used as effectively as possible.
Read more about our programs and how we fund cutting-edge research here.
The first-of-its-kind National Genetic Counsellor will support people affected by ALS with virtual care, helping individuals understand their genetic risk and navigate potential treatment options. They will further advance genetic initiatives across the country and contribute to educational materials, such as the ALS Canada Gene Hub.
ALS Canada’s Research Program sponsors meetings that will enhance the capabilities, knowledge, and collaboration of the Canadian ALS research community. In the second quarter of 2025, we have sponsored:
We’re thrilled to highlight and emphasize the importance of ALS research across Canada, helping drive collaboration toward a world free of ALS.
Did you miss our latest Driving Discovery blog featuring an interview with the ALS Canada Research Team?
Did you miss our latest Inside the Science blog on Imaging 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 so ALS Canada’s Research Team can answer them.
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.