The history of ALS research
Our Research Program has been committed to supporting ALS research for decades, resulting in impactful achievements and a robust track record. Through our partnerships, our donors, and the community we serve, significant advancements have been made in ALS research.
2000
ALS Canada partnered with MDC and CIHR on the Neuromuscular Research Partnership (NRP)
ALS Canada joined the Neuromuscular Research Partnership, which was a collaboration between the CIHR (Canadian Institutes of Health Research), MDC (Muscular Dystrophy Association of Canada), and ALS Canada. The NRP made grants available for research into the causes, treatments, and ultimately the cure for neuromuscular disorders. The first competition in 2000 awarded over $1.1 million in grants to 6 Canadian researchers. In 2001, $4.8 million in grants were awarded.
2004
ALS Canada Research Forum
The inaugural year of the ALS Canada Research Forum. It became an annual event in 2006, taking on a scientific conference format. Since then, the Research Forum has brought together the brightest minds in Canadian ALS research, featuring presentations on the latest discoveries in the field, and highlighting the future of fundamental, clinical, and translational ALS research. Over the years, it has helped to build cross-Canada collaboration and enhance the research projects that fuel the scientific discovery leading us toward a world free of ALS.
Learn more about the ALS Canada Research Forum
2005
Launch of the PhD Studentship
Currently under the Trainee Awards Program. As part of the ALS Canada Research Program, the Trainee Awards provide salary support to PhD students or postdoctoral fellows. These grants attract the brightest young minds to ALS research, bringing new ideas to the field and maintaining Canadian ALS research excellence into the future. The competition also helps to support Canadian labs with the necessary funds to have top early career researchers working on the best projects to better understand the disease and drive toward new treatments for individuals living with ALS.
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2006
Launch of the Postdoctoral Fellowship
Currently under the Trainee Awards program. As part of the ALS Canada Research Program, Trainee Awards provide salary support to PhD students or postdoctoral fellows. These awards attract the brightest young minds to ALS research, bringing new ideas to the field and maintaining Canadian ALS research excellence into the future. The competition also helps to support Canadian labs with the necessary funds to have top early career researchers working on the best projects to better understand the disease and drive toward new treatments for individuals living with ALS.
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2007
Launch of the Clinical Research Fellowship
As part of the ALS Canada Research Program, this fellowship is designed to support the further training of a clinician to develop the skills necessary to be a specialist in ALS and provide experience/training in clinical or basic research relevant to the field.
Learn more about our funding programs
2008
Canadian ALS Research Network (CALS)
With the support of ALS Canada, the Canadian ALS Research Network (CALS) was established as a national, academic alliance committed to the pursuit of ALS clinical research. The network aims to promote multi-centre clinical ALS research studies in Canada and provide the best standard of care for Canadians living with ALS.
Learn more about CALS
2008
Launch of the Discovery Grant
As part of the ALS Canada Research Program, the purpose of Discovery Grants is to invest in the best possible projects that are a) focused on identifying causes of, or treatments for ALS and/or related neurological diseases, including primary lateral sclerosis, progressive muscular atrophy, and ALS/FTLD (frontotemporal lobar dementia), or b) research focused on avenues to maximize function, minimize disability and optimize quality of life through symptom management, and support to persons or families living with ALS. Discovery Grants are designed to support teams of multiple investigators and especially encourage multidisciplinary teams with individuals from outside the field who can combine their expertise in novel or innovative ways.
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2011
ALS Canada provides seed funding to launch the ALS registry under the Canadian Neuromuscular Disease Registry (CNDR)
The ALS registry housed in the CNDR is designed to learn more about the clinical aspects of Canadians living with ALS and the care they receive. Together with their partnership with CALS, this registry enhances our understanding of ALS and patient care, fosters research collaborations, and accelerates the development of new therapies, while collecting real-world evidence of approved treatments.
Learn more about the CNDR
2012
Scientific Medical Advisory Council (SMAC)
The Scientific Medical Advisory Council (SMAC) was formalized from the previous Research Council to provide strategic advice to the Board and management of ALS Canada. SMAC consists of a group of basic and clinical researchers, and members of the ALS community.
Learn more about our advisors
2012
Research Program Strategic Planning
Strategic Planning for the Research Program gave rise to programs like the Career Transition Award, the ALS Canada-Brain Canada Arthur J. Hudson Translational Team Grant, and the internal peer review process, which is now an integral part of the grant program.
Learn more about our peer review process
2014
Ice Bucket Challenge
The generosity of Canadians during the Ice Bucket Challenge and a subsequent $10 million partnership with the Brain Canada Foundation enabled ALS Canada to invest a total of $21.5 million into Canadian ALS research. Since 2014, ALS Canada’s partnership with Brain Canada has resulted in more than $24 million being invested in leading-edge ALS research that has helped further the understanding and treatment of the disease.
Learn more about our Research Program
2014
Launch of the ALS Canada-Brain Canada Arthur J. Hudson Translational Team Grant
Currently an inactive program. Named after Dr. Arthur J. Hudson, the co-founder of ALS Canada, this grant program brought together researchers from across the country to accelerate therapeutic development by: 1) identifying and testing a relevant therapeutic target or candidate therapy and/or 2) addressing critical needs for early diagnosis and biomonitoring of clinical progression applied to clinical research. Research in all stages of development was welcomed, from basic/preclinical to Phase l, II, and Ill clinical trials. ALS Canada partnered with Brain Canada (with the financial support of Health Canada) on this program to leverage contributions made through the Ice Bucket Challenge.
Learn more about our funding programs
2015
First strategic outreach to build relationships with Industry
Based on meetings with Biogen in 2012, prior to the results of the (failed) dexpramipexole trial, ALS Canada began proactively reaching out to ALS-invested pharmaceutical companies for connections to highlight Canada as a top destination for clinical trials and marketing of treatments.
2015
Launch of the Clinical Management Grant
Now under the active Discovery Grant program, Clinical Management Grants were designed to support research focused on avenues to maximize function, minimize disability, and optimize quality of life through symptom management and support to persons or families living with ALS. Examples include, but are not limited to, management of secretions and cramps, psychological interventions to address mental health issues, nutritional interventions, respiratory care, engineering applications to reduce physical limitations, and programs to address the needs of caregivers.
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2015
Launch of the Career Transition Award
As part of the ALS Canada Research Program, the Career Transition Award identifies and engages rising stars pursuing innovative research in labs and academic institutions in Canada. This award has the long-term goal of developing the next generation of scientists across various disciplines within basic and clinical sciences, contributing to knowledge generation and translation in ALS. To fulfill this mission, the award supports a talented early career investigator to pursue advanced research and transition into a junior faculty position at a Canadian institution.
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2015
$15 MILLION FOR RESEARCH
With the generous funding from the Ice Bucket Challenge, 2015 was the biggest year for ALS research funding to date, with 34 projects funded, supporting 56 researchers across 7 provinces.
Explore our funded projects
2016
Project MinE
Project MinE is a multi-national initiative with more than 20 participating countries. It aims to map the full DNA profiles of 15,000 people with ALS and 7,500 control subjects, establishing a global resource of human data that will enable scientists worldwide to better understand the genetic signature that leads someone to develop ALS. In 2016, ALS Canada committed to contributing 1000 whole genome sequences to this globally collaborative initiative.
Learn more about Project MinE
2018
ALS Reproducible Antibody Platform (ALS-RAP)
ALS Canada partnered with the ALS Association and the Motor Neurone Disease Association (MND Association) to invest $600,000 in support of the ALS Reproducible Antibody Platform (ALS-RAP). This funding was used to support the development of an open-access pipeline to validate existing antibodies to key ALS proteins and provide the ALS research community with new, reliable antibodies for ALS genes where none are available.
Learn more about ALS-RAP
2018
RADICAVA IV (edaravone) approved in Canada
The first new, disease-modifying treatment for ALS to be approved by Health Canada in nearly twenty years. ALS Canada begins active advocacy toward improving the drug access pathway.
Learn more about RADICAVA IV
2019
CAPTURE ALS
ALS Canada funded the hiring of a Project Manager to support the building of CAPTURE ALS, which launched in 2022. The role was funded as part of the ALS Canada Research Program for two years before independent support for the program was obtained. CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS is a Canadian platform that unites patients, physicians, and researchers in academia and industry to study ALS. The initiative provides the systems and tools necessary to collect and analyze whole genome sequences, proteins, gene expression, epigenetics, and biochemical metabolites, allowing researchers to obtain a biological fingerprint for each person living with ALS.
Learn more about CAPTURE ALS
2020
Canadian ALS Best Practice Recommendations (BPRs)
In November 2020, the first-ever Canadian ALS Best Practice Recommendations (BPRs) were published in the Canadian Medical Association Journal (CMAJ). Developed over a number of years by a working group of Canadian ALS clinicians under the CALS network, this document represents what specialists in ALS care agree should be the standard of care for any Canadian diagnosed with ALS. The ALS Canada Research Program provided funding and administrative support for the development of the BPRs.
Learn more about the BPRs
2021
Industry Roundtable for Earlier Diagnosis creates ReferALS initiative
In 2021, ALS Canada organized an international industry roundtable with pharmaceutical companies, people living with ALS, and CALS clinicians for a series of presentations and discussions on the importance of accelerating time to diagnosis in Canada. This resulted in the formation of a working group composed of industry and members of the CALS network, that gave origin to the ReferALS initiative.
Learn more about ReferALS
2022
CAPTURE ALS starts recruitment
ALS is a heterogeneous disease, meaning the disease varies from person to person. Understanding why ALS is different in each person – or the clinical variability of the disease – is critical to effectively treating it. Led by a team of world-renowned basic and clinical scientists, including Dr. Sanjay Kalra from the University of Alberta, CAPTURE ALS has been designed to contribute to the global effort to understand ALS, ultimately increasing clinical trial efficiency and accelerating ALS therapy development.In memoriam; Garry Zelasek, diagnosed with ALS in 2020, was the first participant recruited for the initiative. We sincerely thank Garry for his participation in the fight against ALS.
Read more about Garry and his participation
2022
ReferALS resources are created
Designed to help non-ALS general or community neurologists recognize and understand the signs and symptoms of ALS, the ReferALS tool aims to refer suspected ALS cases to a specialty CALS clinic faster.
Learn more about ReferALS
2022
Expanded Brain Canada Partnership on the entire Research Grant Program
For the first time, Brain Canada partnered on all grant programs for 1:1 matching, including the Clinical Research Fellowship, Trainee Awards, Discovery Grants, & Career Transition Award. The partnership continues into 2023 & 2024.
Learn more about our funding programs
2023
Launch of the Acceleration Grant
As part of the ALS Canada Research Program, the Acceleration Grant is designed to support the most promising ALS research worldwide, focused on balancing traditional scientific rigour with the urgency ALS requires. With a shortened turnaround time between idea to funding, this program aims to provide researchers with the funding support they need to make an accelerated difference in the development of cutting-edge research to move the field forward.
Learn more
2024
Launch of ALS Canada Gene Hub
The ALS Canada Gene Hub is the first step in a comprehensive strategy aimed at enhancing our understanding of the role genetics plays in ALS, with current, accurate and relevant genetic information, and resources to enhance access to genetic care. Developed in consultation with key stakeholders, including individuals affected by ALS, healthcare professionals, and partners, the Gene Hub serves as a central resource for global ALS genetic information and opportunities. The resource provides a comprehensive overview, covering topics from the basics of genetics to information and resources on genetic counselling and testing, empowering informed decision-making within the ALS community.
Explore the ALS Canada Gene Hub
