Project MinE logo “Why have I been diagnosed with ALS when so many other people have not?”

This is an all-too-common question of people living with the devastation of an ALS diagnosis, and the ALS Society of Canada (ALS Canada) wants to help answer it. We are leading Canada’s fundraising efforts for Project MinE to support the mapping and analysis of up to 1,000 DNA profiles.

Project MinE is a multi-national initiative with more than 15 participating countries. It will 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 understand the genetic signature that leads someone to develop ALS.

By accumulating such a large amount of data that no one country could achieve alone, it is expected that Project MinE will identify new genetic causes of the disease that will significantly accelerate our ability to advance treatment possibilities that will slow down or stop ALS.

Chris McCauley served as ALS Canada’s ambassador for Project MinE until his death in August 2017. In this video, shot in September 2016, he shares his hope for the initiative:

Other initiatives

In addition to funding ALS research across Canada, we bring together the national ALS research community to share ideas and information and collaborate as a unified group in support of our vision to make ALS a treatable, not terminal disease.

We also support the Canadian ALS research community in contributing to international ALS initiatives that pool our resources and knowledge, enabling us to work together on solving problems that can’t be tackled alone.

By bringing the national and international ALS research communities together, the opportunities for ALS breakthroughs grow.

ALS Canada Research Forum

This annual event hosted by ALS Canada is a venue for researchers to share ideas, form new collaborations and connect with people living with ALS. The forum is attended mainly by the Canadian research community and also, people living with ALS and their family members, volunteers, donors, sponsor representatives and ALS Canada board members.

Event Sponsorships and Travel Awards

To be able to respond nimbly to new ALS research discoveries, ALS Canada sponsors ad-hoc gatherings of ALS researchers to share knowledge on timely topics related to ALS.  Sponsorship requests are reviewed and assessed by ALS Canada’s Scientific and Medical Advisory Council. Recent examples of sponsored events include a bi-annual international workshop on frontotemporal dementia in ALS, the global ALS Clinical Trials Guidelines workshop and the Symposium de la Fondation André-Delambre sur la sclérose latérale amyotrophique (SLA).

We also provide travel stipends to up to 15 Canadian ALS researchers each year to present their work at the International Symposium on ALS/MND. Organized by the International Alliance of ALS/MND Associations,  it is the premier international ALS research conference in the world.

Contact us to learn more about sponsorship funds or travel awards.

National Research Network

ALS Canada is actively facilitating the development of a formalized network of researchers across the country. In previous years, The Canadian ALS Research Network (CALS) sought to bring world-class clinical trials to sites across Canada. This clinical network is now being enhanced and broadened in order to better integrate preclinical research studies. Once established, the new network will reflect a true “bench to bedside” approach that bridges basic laboratory science and clinical application. More information will be available on this site as the network evolves.

ALS Disease Registry

The ALS Canada research program has also supported building the foundation of a national registry for ALS, housed in the Canadian Neuromuscular Disease Registry (CNDR). This database is designed to learn more about the clinical aspects of Canadians living with ALS and the care they receive. This tool, alongside the Canadian ALS Clinical Practice Guidelines, are working towards a standard of care for people living with ALS across the country.

Clinical Practice Guidelines

Since 2014, a working group of ALS specialists has been creating a set of Canadian guidelines that will represent standards of care for people living with ALS. Once completed, the guidelines will support physicians across the country in delivering appropriate care to people living with ALS. They will also serve as a tool for clinicians and other stakeholders to advocate at local, provincial and federal levels with hospitals, lawmakers and others who can affect change to ensure the standards of care are being met. ALS Canada has supported all aspects of the evidence-based process to develop the guidelines, including convening the working group and professional literature searches.

Projects funded

ALS Canada-Brain Canada Arthur J. Hudson Translational Team Grant

Named after Dr. Arthur J. Hudson, the co-founder of ALS Canada, this grant program brings 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 is welcomed, from basic/preclinical to Phase I, II and III clinical trials. ALS Canada partners with Brain Canada (with the financial support of Health Canada) on this program in order to leverage contributions made through the Ice Bucket Challenge.

Project Grants

Project Grants provide funding for three different types of ALS research: 1) outside-the-box research that would not easily be successful in receiving funding from other agencies due to the high risk/high reward nature of the work (previously called Discovery Grants); 2) Research already underway that has demonstrated promise and would benefit from continued funding in order to maintain momentum (previously called Bridge Grants, with the requirement of having applied to CIHR for funding); and 3) research focused on avenues to maximize function, minimize disability and optimize quality of life through symptom management and support to people living with ALS (previously called Clinical Management Grants). The Project Grant category represents a combination of three different grant programs prior to 2017.

Trainee Awards

By providing salary support to PhD students, trainees with a postdoctoral position, or clinical fellows or recently-hired junior faculty members, 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 Trainee Grant category represents a combination of different grant programs prior to 2017.

ALS Canada-Brain Canada Discovery Grants

The discovery grant program encourages new basic research focused on identifying causes of or treatments for ALS. The goal of this program is to build a foundation of data for novel, out-of-the-box ideas in ALS research or to attract investigators from related fields who bring new expertise to ALS research. ALS Canada partners with Brain Canada (with the financial support of Health Canada) on this program in order to leverage contributions made through the Ice Bucket Challenge.

ALS Canada-Brain Canada Career Transition Award

Ensuring that Canada continues to have a strong community of talented ALS researchers is the goal of this research funding, which supports senior postdoctoral trainees as well as recently hired junior faculty members to secure or maintain a faculty job in Canada. Recipients of this funding are all pursuing forward-thinking, high-impact ALS research aimed squarely at helping to make the disease treatable, not terminal. Furthermore, this research will have a broader impact on our understanding of other neurodegenerative diseases. ALS Canada partners with Brain Canada (with the financial support of Health Canada) on this program in order to leverage contributions made through the Ice Bucket Challenge.

Ronald Peter Griggs and Tim E Noël Postdoctoral Fellowships

Fellowships provide salary support for promising young investigators who at this point in their careers are making critical decisions about the areas they will study in the future.  Supporting the highest calibre applicants at this stage provides the best possible chance for maintaining Canadian ALS research excellence in the future.

ALS Canada Doctoral Research Awards

These awards provide $25,000 per year over three years for young researchers to pursue a PhD in a Canadian laboratory. This funding also assists the hosting laboratory by offsetting funds that will help them to achieve their goals. As a result, it is a wise investment with the potential to launch the career of a future leader in the field and further secure our ability to achieve the vision of making ALS a treatable, not terminal disease.

ALS Canada Bridge Grants

This program is designed to maintain the momentum of the best ongoing ALS research projects in Canada that applied to federal government grant competitions through the Canadian Institutes of Health Research (CIHR). CIHR grant competitions typically have over 2,000 applicants spanning all forms of health research from across the country, and only the top 10-15% receive funding. This can make it very difficult for ALS grants to be supported. The ALS Canada bridge grant program combines CIHR scores and an independent assessment of the impact on the field of ALS through peer review, to determine the recipients of $100,000 for use over one year.

ALS Canada Clinical Management Grant

Many of the choices that clinicians make in treating symptoms, or that families make on seeking care are anecdotal or based on evidence from other diseases. Formal assessment of these avenues in ALS patients could address potential gaps in care. 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.

Bernice Ramsay Clinical Research Fellowship

This program supports specialized training in clinical care and research skills related to ALS. The program awards a researcher $100,000 per year for two years and is designed to strengthen the Canadian ALS clinical community. These were also made possible by the generous estate of Bernice Ramsay, which donated $2.28 million to ALS Canada in 2006. Peer review is performed by a panel of not-in-conflict Canadian ALS clinicians.

ALS Cycle of Hope Doctoral Research Award

In 2015, the ALS Cycle of Hope sponsored a PhD student to pursue their studies in ALS for three years at $25,000 per year. The student was chosen as the top-ranked individual in the 2015 Doctoral Research Award competition.

ALS Canada Postdoctoral Fellowship

In times where extra funding has been available and following the awarding of any named fellowships, additional recipients have been named for ALS Canada.