From the Research Desk – March 2026

Since 2024, the Global MND Research Roundtable has been building momentum, sparking ongoing collaboration through international meetings moderated by ALS Canada and FightMND, reaching over 600 researchers across more than 50 countries worldwide. These discussions have laid the groundwork for five international working groups, consisting of world leaders in each area, to discuss and implement key actions that can move the ALS research field forward faster. These five core areas of focus include: 

• Validation of biomarkers 
• Global collaboration on asymptomatic ALS/FTD research 
• Improved and collaborative global practices of human laboratory models of ALS 
• Accelerating research and capacity in under-represented regions (Global South) 
• Improving preclinical tor clinical translation of therapeutics  

The first meetings have taken place, and each group has set paths in motion to fill major gaps in ALS research that would otherwise take years to tackle. ALS Canada and FightMND will be partnering to hire someone who will manage this Global Roundtable Initiative, and we will be excited to share more information in the future about these efforts. 

ALS Canada proudly serves as one of two non-U.S.-based members on 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 highlight of this role involves the opportunity to hear from and provide feedback on the progress of ongoing studies funded by the program.  

On January 8, the Programmatic Panel convened to discuss and recommend the breakdown of the competitions for the 2026 funding mechanism. This involves a reflection on areas of improvement from the previous year’s learnings and a possible readjustment in the number of anticipated grants to fund under each of the four streams, which are focused on therapeutic discovery, therapeutic validation, biomarker and clinical trial outcome measure work, and pilot clinical trials. 

From March 1-4, 2026, Dr. David Taylor attended the 26th Annual Packard Center ALS Research Symposium . The conference brings together leading researchers committed to empowering the early-stage, foundational research needed to guide the development of future therapies and biomarkers for people living with ALS.  

This meeting is the ultimate congregation of thought leaders on ALS discovery science aimed at better understanding the disease, with a goal of translating to the clinic. ALS Canada’s participation keeps us at the cutting edge of knowledge leadership to support our work and communication to people affected by the disease.  

ALS Canada will also be announcing a new partnership with the Packard Center soon. Stay tuned for details! 

We had the pleasure to meet with the team at North Star ALS, a new initiative for the global community. Founded by people directly affected by ALS, North Star was created to support research guidance and connect patient voices to research progress. Our team is excited to see what’s ahead and to help highlight their programming. 

AriSLA is the main non-profit organization that funds and promotes the excellence of scientific research on ALS in Italy. Dr. Taylor sits on AriSLA’s Scientific Advisory Board (SAB), influencing and supporting funding mechanisms, infrastructure investments, and strategies. 

On March 23, the SAB was updated virtually on AriSLA’s Strategic Plan’s progress and supported recommended pathways to consider for their forthcoming Strategic Plan. A follow-up meeting in Milan, in conjunction with their scientific conference, is set for November. 

Under the leadership of Dr. Brian Dickie, Chief Scientist at the MND Association, and Professor Ammar Al‑Chalabi, Symposium Chair, a committee including ALS Canada and researcher representatives from the U.S. and the Netherlands convened to share ideas and shape the upcoming Symposium. The 37th International Symposium on ALS/MND will take place in December 2026 in Amsterdam. 

ALS Canada has served on this committee since 2019, with ongoing involvement that includes providing additional support each summer by helping review and assess the scientific abstracts submitted for presentation at the meeting.

ALS Canada serves on the Research Directors Forum of the International Alliance of ALS/MND organizations, where research leaders from peer organizations gather to share best practices and find new avenues of partnership and collaboration. Several meetings with peer ALS organizations around the world have been held in the first quarter, reinforcing a globally collaborative ecosystem.  

ALS Canada continues its investment in strategic connections to highlight Canada as a top destination for clinical trials and marketing of treatments. In the first 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. 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 also maintains strong relationships with industry to find new ways that pharmaceutical companies can support progress towards a world free of ALS. One example of this occurred in January, after a widely used genetic testing program, paid for by a particular pharmaceutical company, was abruptly cancelled. In collaboration with the ALS National Genetic Counsellor, several meetings were quickly held with other members of industry to discuss support for any gaps to Canadians needing genetic testing, now or should any arise in the future. 

ALS Canada also serves as the only non-neurologist, standing member of a significant ALS pharmaceutical company advisory board (unpaid) that will meet twice in March. There are no other Canadians serving on this group.

This past quarter, ALS Canada hosted a Reddit Ask Me Anything (AMA) to raise awarenesses of ALS, where Dr. Taylor answered questions directly from the public. Read the full discussion here. 

The ALS Canada Research Team played an important role at the 2026 CALI, facilitating sessions and leading presentations. People impacted by ALS had the opportunity to better understand the ALS research landscape and studies, hear insights into the ALS Canada Research Program, and learn how to navigate scientific articles and clinical trials.  

Additionally, together with the ALSNGC, we facilitated the first-ever CALI genetics presentation, focused on addressing commonly asked genetic questions and sharing our ongoing efforts. 

Read more about the CALI program. 

The Research Team meets regularly to check–in on the progress of more than 30 active research projects we fund across Canada and internationally. These discussions are important in helping us assess how each project is moving the field forward, but also to further ensure that donations and funding are being used thoughtfully and responsibly, while helping us learn, improve, and shape future research efforts with the greatest possible impact for people affected by ALS. 

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 January, we heard from early career researchers Mariam Choughari, Liane Phung, and Aakanksha Singh. The presenters talked about their ongoing work in TDP-43 pathology, quantitative transcranial magnetic stimulation (TMS), and neuroimaging research. 

In March, we heard from Anna Huynh, Dr. Hana Fakim, and Dr. Dale Martin, covering their work in bulbar ALS, TDP-43 pathology, and protein mislocalization in ALS. 

At the first 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 March, 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:  

Brain Computer Interface (BCI) – Synchron  

Stay tuned for episodes focused on Coya Therapeutics’ COYA 302 Phase 2 trial, Prilenia’s pridopidine Phase 3 trial, and more in the months ahead.