From the Research Desk highlights recent activities and accomplishments from the ALS Canada Research Team. From global conferences to impactful partnerships, our Research Team had a strong start to 2025. 

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. 

INTERNATIONAL PRESENCE

In 2025, members of the ALS Canada Research Team continue to attend important international meetings shaping the future of ALS research. 

TRICALS (Treatment Research Initiative to Cure ALS) is a meeting that brings together researchers, industry partners, people living with ALS, and regulators. Some of the urgent research topics discussed included the improvement of clinical trials, miscommunication around clinical trial data, the high rate of negative trials, how to make better use of real-world data and prediction algorithms, NfL measurements, and patient-centered drug development.  

Through being part of these important and pointed discussions in Europe, ALS Canada can help facilitate the accelerated sharing of opinions and ideas in Canada and across the global ALS ecosystem. 

The Packard Center ALS Research Symposium brings together leading researchers committed to empowering the early-stage, foundational research that is 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 that is 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. 

During December 2024, in Montreal, Canada, ALS Canada was fortunate to co-host a meeting for a global initiative to address key gaps in the ALS/MND research ecosystem, aimed at collaboratively tackling key areas of impact. In 2025, our team continues to help drive the initiative forward. Currently, nearly 600 researchers, in close to 60 countries, have been engaged. Nearly 200 researchers have signed up to support the current phase of this exciting collaboration. 

PARTNERSHIPS AND RESOURCES

The ALS Canada Research Team sits on the Health Charities Coalition of Canada (HCCC) Research Committee. The HCCC is dedicated to advocating for sound public policy on health issues and promoting the highest quality health research. Topics discussed in their meetings include partnership guidelines, training programs, advocacy efforts, peer review processes, and emerging topics in research.  

The Research Team continues to provide strong support to the Canadian ALS Research Network (CALS). With QALSODY’s approval by Health Canada, the next step in the process involves a review by Canada’s Drug Agency (CDA). The CDA review is a critical part of the drug reimbursement process in Canada. Our team helped to coordinate the clinician input on QALSODY submitted by CALS clinicians, ensuring that the clinical perspective—on how the drug is used in practice, benefits and risks, and impact on patient care—is accurately represented during the review.  

Read more about QALSODY and CALS. 

ALS Canada is proud to partner with Global Neuro YCare on this new international resource supporting families affected by a genetic form of ALS. 

The resource provides essential information on the genetics of ALS, guidance for families affected on how to approach conversations about genetics with children and youth, and genetic testing considerations for at-risk adults. 

Access the resource on the ALS Canada Gene Hub. 

MEETINGS & WEBINARS

The ALS Canada Research Team played an important role at the 2025 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. 

Read more about the CALI program. 

ALS Canada connected with 2023 Acceleration Grant recipient Dr. Mónica Povedano and her team. Dr. Povedano’s project, Epidemiological study of ALS in Colombia and Ethiopia, has the goal to enhance clinical and research infrastructure in South America and Northern Africa. 

The Research Team was excited to see the study’s advancement and how our support is contributing to the growth of ALS research globally. 

Read more about the ALS Canada Acceleration Grant. 

Highlighting Early Career Researchers 

The ALS Research Community Sessions, hosted by ALS Canada, are open to ALS researchers across the country. Through the 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 the January 2025 session, we heard from three early career researchers working on TDP-43 pathology, the neuromuscular junction, and stress granule dynamics, highlighting the next generation of ALS research 

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

ALS Clinical Trials Unboxed: Amylyx LUMINA 

ALS Clinical Trials Unboxed: Probiotic HA-114 

 

Stay tuned for more information on the May ALS Canada Clinical Trials Unboxed webinar with Novartis, talking about VHB937! 

ALS CANADA RESEARCH PROGRAM

Launch of the 2025 ALS Canada-Brain Canada Clinical Research Fellowship and Trainee Awards 

Each year, we provide Canada’s ALS research community with opportunities to apply for research funding through the ALS Canada Research Program. We were excited to open applications for the 2025 Clinical Research Fellowship, designed to support advanced training for clinicians to develop the skills necessary to become a specialist in ALS. ALS Canada’s Peer Review Committee, composed by Canadian ALS clinicians, is currently assessing the applications.  

Additionally, we have also launched the 2025 Trainee Awards, which provide crucial support to promising doctoral candidates and post-doctoral fellows in the early stages of their careers. 

 

Launch of the 2025 ALS Canada Travel Awards 

Travel Awards support Canadian ALS researchers by enabling them to attend and present their work at ALS conferences of international scope and significance. In 2025, we are pleased to continue fostering international collaboration and support Canada’s presence in the global ALS research community. 

LOOKING BACK AT DECEMBER 2024

Read more about ALS Canada’s participation at the 35th International Symposium on ALS/MND and sponsorship to the André-Delambre ALS Research Symposium.  

The International Alliance of ALS/MND Organizations convened a group of global research directors to collectively make progress on key items of shared impact. After a full day meeting together in December, the group, including ALS Canada, will be working on an ambitious program to centralize global work in a way that provides efficiency for researchers everywhere. For more information on this, stay tuned to the Alliance’s social media channels.  

ALS Canada was fortunate to co-host a meeting with our friends at FightMND and MND Australia, bringing together 50 of the top ALS/MND researchers in the world to take next steps for this important initiative, aimed at collaboratively tackling key areas of impact. Food and meeting space was generously supported through sponsorship from Biogen. 

The Research Team visited ALS labs and clinics in Montreal, driving discussions around current research. The team had the chance to connect with several key individuals from the research and clinical community, funded and supported by the ALS Canada Research Program.  

Read more about projects funded.  

INSIDE THE SCIENCE 

Did you miss our latest Inside the Science blog on Brain-Computer Interface and ALS?  

Read it now.  

ALS RESEARCH AND CLINICAL TRIALS 101 Q&A DROP-IN 

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 we can answer them. 

Register today. 

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