From the Research Desk – June 2026

Since 2024, the Global MND Research Roundtable has been building momentum, sparking ongoing collaboration through international meetings moderated by ALS Canada and FightMND (Australia), 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 groups include: 

• Validation of biomarkers (VIBRANT) 

• Global collaboration on asymptomatic ALS/FTD research (AWARE) 

• Improved and collaborative global practices of human laboratory models of ALS (iGLOBALS) 

• Accelerating research and capacity in under-represented regions (Global South) (SEED) 

• Improving preclinical to clinical translation of therapeutics (TAP)  

Each group is currently setting in motion paths to fill major gaps in ALS research that would otherwise take years to tackle. The next step is to hire a Global Roundtable Lead through FightMND, in partnership with ALS Canada, and the search is well underway. This individual will ramp up operations to move the needle on these important initiatives. 

In the meantime, the SEED (Supporting Excellence, Equity and Discovery in ALS/MND) working group has passed its key priority to the International Alliance of ALS/MND Organizations to launch a funding opportunity that supports low- and middle-income countries in building research infrastructure and contributing meaningful knowledge to global research efforts. The inaugural SEED (Supporting Excellence, Equity and Discovery in ALS/MND) grant competition launched on Global ALS/MND Awareness Day, June 21. ALS Canada is proud to be one of the co-funders of this grant program and to have played a role in helping it come to fruition.  

We are excited to share more information in the future about all Roundtable Initiative efforts. 

ALS Canada is honoured to serve on the five-member Scientific Review Group (SRG) for the GoALS initiative in the Netherlands and to have been present at the GoALS Progress meeting on May 28-29, 2026, in Utrecht. 

GoALS is a major, long-term research program in the Netherlands that brings together different types of ALS research into one coordinated effort, with the goal of finding new treatments faster. Instead of working in separate efforts, GoALS connects everything in one place: from studying ALS genetics in a unique and powerful way, to testing ideas in a wide array of new lab models made from human cells, to new innovations in clinical trial design, execution, and biomarkers. GoALS is also working to take some of its own novel discoveries all the way from the lab to clinical trial in a matter of a few years.  

By linking all these steps, the program aims to speed up the process of turning scientific discoveries into real treatments for people living with ALS. It is a remarkable ecosystem that has been built at the Utrecht Medical Centre, and ALS Canada is proud to have the opportunity of being involved. 

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 was proud not only to sponsor this workshop hosted by the ALS Hope Foundation, but also that Maya Binet, the ALS National Genetic Counsellor, was part of the conversations in the room. Maya has brought back the content from these valuable discussions to help inform how Canada can move forward on strategies for clinical care of asymptomatic individuals at higher genetic risk of ALS. 

The meeting brought together clinicians, researchers, and important voices from the ALS community, ensuring that lived experience was reflected in the conversation. 

An earlier workshop, also sponsored and attended by ALS Canada, resulted in the publication titled Guidance for clinical management of pathogenic variant carriers at elevated genetic risk for ALS/FTD, an important piece discussing environmental risk factors for families affected by genetic ALS.

Late June, ALS Canada is engaged with the global research community at the ENCALS (European Network to Cure ALS) meeting, with Dr. David Taylor, Chief Scientific Officer, in attendance.  

We also co-sponsored a dedicated Gene Carriers Studies meeting. This session brought together researchers studying people who carry ALS/FTD-related genetic variants but are not showing symptoms (presymptomatic or asymptomatic). The goal is to align global efforts by identifying key gaps, setting shared research priorities, and establishing collaborative working groups to advance presymptomatic research and care. 

This meeting is also tied to the AWARE (ALS Worldwide Asymptomatic Research Endeavour) group of the Global Roundtable Initiative, mentioned previously.  

ALS Canada is honoured 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 Group.  

We attended the launch ceremony for PLUS-ALS on May 28 in Utrecht. Funded by the Romo Foundation, this is a five-year project bringing together top expertise in Belgium and the Netherlands, to do something of impact globally. As they powerfully state, “for the first time, multiple biomarkers will be studied simultaneously and over time within the same group of ALS patients. This approach will make it possible to quickly determine which measurement methods are most suitable and which new drugs have the highest chance of success.” 

It is very exciting to have any role in cutting-edge, globally impactful initiatives like this.  

PLUS-ALS is also a collaboration between Stichting ALS Nederland, ALS Liga Belgie, the Dutch ALS patiëntenvereniging, and TRICALS.

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.   

Each summer, this panel provides a peer review process for pre-applications to determine which groups will be invited to submit full applications for consideration through a rigorous process in the autumn.

For the eighth consecutive year, our team is contributing to the MND Associations Programme Committee for the upcoming International Symposium on ALS/MND in Amsterdam this December. Following an initial meeting earlier this year, committee members review hundreds of scientific abstracts in July to assess their suitability for poster or oral presentation.  

ALS Canada has once again been invited to support colleagues at the MNDA and the Committee Chair during the final decision meeting. 

The broader ALS Canada team meets regularly and provides ongoing support to the Lumiio team and the Canadian Neuromuscular Disease Registry (CNDR) in an exciting collaboration to develop a new ALS app designed to support people across Canada and expand opportunities to participate in research. 

The CNDR plays a critical role in connecting people living with ALS to research by securely collecting and managing data that helps researchers better understand how the disease develops and progresses, as well as insights into care and real-world treatment evidence. 

ALS Canada has committed $100,000 to support the integration of a CNDR research component within the app, helping ensure it can reach and engage Canadians wherever they live.  

Stay tuned for more information!

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. 

The Research Directors Forum (RDF – International Alliance of ALS/MND Associations) plays a key role in aligning global ALS/MND research priorities, identifying gaps, assessing funding impact, and fostering an inclusive, collaborative research network. The group aims to collaborate on an initiative of global importance to the field.  

The RDF met on April 16, 2026, for a specific discussion on global data sharing, and again on June 3, 2026, to talk about a forthcoming global landscape tool to expedite ALS research, and to share best practices. An additional meeting took place on June 24, 2026, in conjunction with the ENCALS meeting in Madrid, where the Research Directors in attendance utilized the advantage of being together to find new areas for collaboration and impact. 

Held by ALS Canada, ALS Advance: National Meetings brought together more than a hundred researchers, clinicians, early career scientists, and members of the ALS community from across the globe to rethink how we approach ALS research and care. 

Bringing together four interconnected events, ALS Advance focused on strengthening connections across the ALS ecosystem: supporting early career researchers and their connection to our community, improving care practices, encouraging collaboration across disciplines and lived experience, and, as a highlight, pushing beyond traditional ways of thinking in research to disrupt ALS. 

We’re grateful to all attendees for their engagement, thoughtful discussions, and the impact we achieved together. 

For a more detailed recap, read our story Inside ALS Advance: National Meetings 2026, with more stories highlighting each event coming soon.  

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 May, we heard about advances in understanding and targeting TDP-43, a key protein involved in ALS. Dr. Marc Shenouda (University of Toronto, Neuropeutics Inc.), Carina Lyons (University of Toronto), and Dr. Aravindhan Ganesan (Wilfrid Laurier University) shared their research. 

At the second 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 April, 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:  

PREVAiLS clinical trial with Dr. Angela Genge, talking about Pridopidine.  

ALSTARS clinical trial with Dr. Tyrell J. Simkins, talking about COYA 302.