OUR
IMPACT
Research
& Grants
Through the leadership of ALS Action Canada, guided by our Advisory Council, we’ve delivered 10 grants to organizations leading on ALS. The current list of grantees include:
Sunnybrook Research Institute
Two-year funding commitment to the The QuARTS ALS Trial, led by project leader Dr. Lorne Zinman. A biomarker-directed neuromodulation trial using quantitative and repetitive transcranial magnetic stimulation in ALS. This study is a multi-
stage, adaptive design trial evaluating the safety, tolerability, stimulation dosing, corticospinal hyperexcitability (CSHE) reduction efficacy and changes in biomarkers following high-dose, multi-targeted, accelerated continuous theta burst simulation. Stage 1 and 2 have been completed, with a report due in the coming months to set the path for Stage 3.
The Royal Institution for the Advancement of Learning at McGill University
With only 2 ALS disease-modifying therapies approved and few ALS clinical trials run in Canada, this project aims to create Access ALS, the First National Network for ALS Clinical Trials in Canada that will increase the number of early phase-ready sites through the expertise developed at the Neuro Clinical Research Unit under the leadership of Dr. Angela Genge, internationally recognized for successfully running Phase 1 to 4 ALS clinical trials at the Neuro for the last 20 years. Establishing a centralized, supportive network we believe could make Canada a global leader in early-phase ALS trials, granting access to new treatments from trial to market and empowering Canadian patients in trial participation.
PROJECT HOPE at Djavad Mowafahian Centre for Brain Health at the University of British Columbia
Under the leadership of neurologist and ALS researcher, Dr. Erik Pioro, PROJECT HOPE emerged in 2024 as a pioneering initiative with a bold and visionary agenda for the next 3-5 years. The mission is to ignite a beacon of hope for everyone touched by ALS — from patients and their families to caregivers, clinicians, specialists, researchers, and beyond. Dr. Pioro is at the forefront of assembling a world-class ALS Clinical Care Team, bringing together specialist staff including occupational therapists, physical therapists, speech therapists, nutritionists, social workers, and nurses.
The ALS Society of Alberta
A non-profit organization dedicated to making each day the best possible day for people living with and affected by ALS and is the only non-profit organization in Alberta that provides support to those affected by the disease, and also invests in the most promising research initiatives in Alberta. Funds have been directed to support the Alberta ALS Research Network (AARN). This collaborative network brings together ALS researchers and clinicians across the province to strengthen local research capacity, foster partnerships, and accelerate discoveries that will ultimately benefit people living with ALS. The funds are helping to lay the foundation for coordinated ALS research in Alberta.
ALS Therapy Development Institute
The world’s largest drug discovery lab focused solely on ALS based in Massachusetts. As a nonprofit, ALS TDI is only answerable to community stakeholders in finding effective treatments for ALS, and is focused on research to invent and discover treatments to slow, stop, and reverse ALS. The ALS TDI lab executes research encompassing all areas of ALS target and drug discovery research – including preclinical, clinical, and translational – under one roof. Funding directed to highest priority needs.
ALS Quebec
ALS Quebec raises awareness, advocate for rights, fund research, and support people affected by ALS with a complete range of services adapted to all stages of the disease. Funding directed to highest priority needs.
Pete Frates Foundation
The Foundation is dedicated to improving the lives of those affected by ALS by providing essential patient care, supporting innovative research for a cure, and educating communities to drive awareness and action. Funding directed to highest priority needs.
Roger Neilson House
Based in Ottawa and named after the former NHL hockey coach, this hospice offers a variety of specialized grief support programs for children, youth and adults, as well as end of life and respite care. Funding directed to highest priority needs.
Veronique Belzil, is dedicated to research, community outreach, and patient support. Funding directed to highest priority needs.
ALS Action Canada
The only ALS patient-led organization that raises and amplifies patient voices, and fundraises for and administers the ALS Super Fund.
Vanderbilt University ALS Research Centre
The ALS laboratory, led by Dr. Veronique Belzil, is dedicated to research, community outreach, and patient support. Funding directed to highest priority needs.
ADVOCACY
ALS Action Canada was created to ensure that ALS patient voices are seen and heard wherever ALS is the subject. Through centring and raising patient voices, we increase awareness about ALS and its impact, and work tirelessly to inform policy, process, support, and funding change.
From letter campaigns to Canada Drug Agency, to federal pre-budget submissions, meetings with Health Canada, drug reimbursement review recommendations, and papers including “Urgent Access to Promising Treatments Available Worldwide”, and the “Triple Jeopardy Report”, ALS Action Canada is laser-focused on the most important and timely issues important to ALS patients and their communities.
We create and deliver direct responses and proactive communication to these issues, informed by the diversity of lived experience and expertise of our patient, caregiver, and expertise community.
impact Report
We are so pleased to share the 2024-2025 Impact Report that highlights what you helped make possible since our inception in 2020, and includes the key achievements in this last enormously transformative year. Since 2023 alone, together we’ve raised $1.6M, engaged all 32 NHL teams, and continued to grow a movement around our shared goals for healthier, longer lives for people living with ALS, and focus on a cure. This report is truly a testament to the power of ALS voices, amplified through Canada’s only ALS patient-driven organization.
About our
ALS Community Group
Our ALS Community Group is a free, bi-weekly, patient-led virtual connection point for ALS patients and caregivers located in Canada. This Group is a community-driven, non-medical, informal meeting opportunity to connect with others with lived experience on all things ALS. From tips and techniques, equipment, clinical experiences and trials, home care, caregiver burden, MAiD, highs, lows, laughs and more, the Group helps those who are ready to learn, share, and engage with others no matter where they are on their ALS journey. The Group is open to participants of all abilities, and participants are subject to our confidentiality and respectful communication policies.
