From the Research Desk – September 2026

We are excited to share that Dr. Jennie Gabriel, a research leader with experience in neurodegeneration, research management, and science communication, was hired as a dedicated Global MND Research Roundtable Lead, to help coordinate the Roundtable’s activities and support the international collaborations driving these efforts forward.

Since 2024, the Global MND Research Roundtable has been building momentum, fostering international collaboration through meetings convened by ALS Canada and FightMND (Australia) that have engaged more than 600 researchers from over 50 countries. These discussions have laid the groundwork for five international working groups, bringing together leading experts from around the world to identify and implement actions that can accelerate progress in ALS research.

These groups include:

• VIBRANT (Validation of Biomarkers): Advancing the validation and adoption of biomarkers to support ALS research and therapeutic development.
• AWARE (Asymptomatic ALS/FTD Research): Strengthening global collaboration in research focused on the presymptomatic stages of ALS and frontotemporal dementia.
• iGLOBALS (Improving Global ALS Laboratory Standards): Promoting more consistent and collaborative approaches to human laboratory models of ALS.
• SEED (Supporting Equity and Emerging Development): The working group has transitioned to the International Alliance of ALS/MND, which launched the SEED Grant Program to help underrepresented countries to strengthen ALS/MND research infrastructure and contribute to global research efforts. ALS Canada is proud to be a co-funder of the program.
• TAP (Translation Acceleration Program): Improving the translation of promising discoveries from preclinical research into clinical testing.

Each group is now putting plans into motion to address major barriers and opportunities in ALS research that would otherwise take years to tackle independently. We look forward to sharing more updates as these initiatives continue to grow and create new opportunities for collaboration and impact worldwide.

We are proud to have contributed to the recently published paper, Repairing the Amyotrophic Lateral Sclerosis Trial Credibility Gap, alongside leading experts and ALS organizations.

The paper highlights challenges in ALS drug development and calls for greater rigour and transparency in how clinical trials are designed, interpreted, and communicated. By strengthening these research practices, we aim to help the field focus resources where it matters most, not wasting opportunities and investment.

This September, Dr. David Taylor, Chief Scientific Officer at ALS Canada, attended the in-person AMP® ALS Steering Committee Meeting, representing ALS Canada within this international partnership focused on accelerating ALS treatment development.

AMP® ALS, led by the Foundation for the National Institutes of Health (FNIH), is a major initiative aiming to drive progress on large-scale biomarker initiatives, shared data resources through the ALS Knowledge Portal, and efforts to improve clinical outcomes measures and trial readiness across the ALS research landscape.

ALS Canada is one of the only non-U.S. based partners. We are proud that we are able to support the initiative and push for Canadian and global research representation and opportunities.

ALS Canada participated in the FY26 Amyotrophic Lateral Sclerosis Research Program (ALSRP) pre-application screening process, helping assess and guide the next generation of ALS research proposals.

Through its ongoing role on the U.S. Department of Defence-funded ALSRP Programmatic Panel, we help shape how millions of dollars in ALS research funding are invested, supporting promising studies and new ideas that could help bring better treatments to people affected by ALS sooner.

ALS Canada continued its involvement with the international Research Directors Forum (RDF), a global network of ALS/MND research leaders working to strengthen collaboration and align research priorities across organizations worldwide.

Current discussions focus on identifying shared opportunities, addressing gaps in the research ecosystem, and advancing collaborative initiatives that can accelerate progress for the ALS community.

This past quarter, Maya Binet, Canada’s ALS National Genetic Counsellor, contributed to several international education and knowledge-sharing initiatives. In July, she presented at the International Alliance Roundtable, Living with ALS/MND: Building the Baseline Model for ALS/MND Multidisciplinary Care, and in September, she spoke at the 2026 Alliance Fellows Program.

In addition to research projects and supporting individuals and families through genetic counselling, we are glad that Maya can contribute to global conversations that are strengthening ALS care, research, and education.

The ALS National Genetic Counsellor position is proudly led by ALS Canada and the University of Calgary, with funding support from TD Bank.

We are proud to have served on the CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS Executive Committee since the study began and continue to support the platform, both in this capacity and through funding, with its plans to expand to CAPTURE ALS 2.0 across Canada.

We also attend meetings of the CAPTURE ALS Patient and Partner Advisory Council (PPAC), where valuable feedback from the community is provided about the ongoing and forthcoming activities of the initiative. Perspectives gathered in those meetings help to inform the evolution of community connection in all our research programs.

We look forward to sharing more about ongoing efforts and recruitment as updates become available.

ALS Canada continues its investment in strategic connections to highlight Canada as a top destination for clinical trials and marketing of treatments. In the third quarter of 2026, the organization has interacted and attended meetings with several companies invested in ALS clinical development from late preclinical stages to Phase 3 clinical trials.

ALS Canada was proud to sponsor and attendee of the 2026 André-Delambre ALS Research Symposium in Montreal, a key event that brought together researchers, trainees, clinicians, and other members of the ALS community to share the latest advances in ALS research.

We were glad to connect with ALS Canada funded trainees and researchers and support their ongoing research.

By supporting events like this, we help create opportunities for more than 100 ALS experts to collaborate, share knowledge, and create new partnerships that can accelerate progress.  

Dr. David Taylor, Chief Scientific Officer at ALS Canada, was a featured speaker at the EverythingALS webinar this past September.

Drawing a unique perspective on both the challenges and opportunities facing the ALS field today, Dr. Taylor shared key developments shaping ALS research, from new clinical trials and biomarker discoveries to A.I., genetics, and international collaboration.

Watch the full recording here.

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, we heard from three emerging researchers using innovative approaches to better understand ALS.

• Jaya Bansal (University of Calgary) shared her work using neuroimaging to investigate the role of the brain’s glymphatic system in ALS.
• Dr. Pedram Parnianpour (University of British Columbia) discussed how advanced MRI analysis and AI can help characterize patterns of brain degeneration in ALS and identify potential imaging biomarkers.
• Dr. Tzu-Yu Lin, an ALS Canada-funded postdoctoral fellow at McGill University, presented research examining the behaviour of TDP-43 within the cell nucleus, providing new insights into how disruptions in this key ALS-related protein may contribute to disease.

Together, these presentations highlighted new technologies and perspectives that are helping advance our understanding of ALS biology and progression here in Canada.

At the third 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 genetics.

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.

Did you miss the latest ALS Canada Clinical Trials Unboxed webinars? Check out the recordings on our YouTube Channel:

FUNCTION ALS clinical trial with Trace Neuroscience, talking about TRCN-1023.