Community News and Media

ALS Canada is a source of accurate, up-to-date information about ALS and a point of contact for members of the media looking to inform the public about ALS, including the experiences of people living with the disease and the latest research developments with the potential to make ALS a treatable, not terminal disease.

Please review our recent news releases for the most up-to-date information about ALS research, awareness, and more. For more information or to request an interview with an ALS Canada spokesperson, please contact media@als.ca.

Community News

RADICAVA Oral Suspension (edaravone) listed on the Provincial Drug Formulary in Ontario

August 1, 2023 – The province of Ontario has listed RADICAVA Oral Suspension (edaravone), also known as oral edaravone, on the public formulary as a therapy accessible through the Ontario Drug Benefit Program’s Exceptional Access Program (EAP) as a treatment for ALS. Read more.

Mitsubishi Tanabe Pharma Canada announces the conclusion of the pCPA negotiations for RADICAVA Oral Suspension (edaravone)

July 20, 2023 – Mitsubishi Tanabe Pharma Canada and the pan-Canadian Pharmaceutical Alliance (pCPA) have successfully concluded negotiations for RADICAVA Oral Suspension (edaravone), also known as oral edaravone, and entered into a Letter of Intent (LOI) for the terms and conditions under which the therapy would qualify for reimbursement through federal, provincial, and territorial public drug plans in Canada. Read more.

ALBRIOZA listed on the Provincial Drug Formulary in Ontario

June 28, 2023 – The province of Ontario has listed ALBRIOZA on the public formulary as a therapy accessible through the Ontario Drug Benefit Program’s Exceptional Access Program (EAP) as a treatment for ALS. Read more.

Amylyx announces the conclusion of the pCPA negotiations for ALBRIOZA

June 15, 2023 – Amylyx and the pan-Canadian Pharmaceutical Alliance (pCPA) have successfully concluded negotiations for ALBRIOZA and entered into a Letter of Intent (LOI) for the terms and conditions under which ALBRIOZA would qualify for reimbursement through federal, provincial, and territorial public drug plans in Canada. Read more.

Qalsody (tofersen), has been newly approved in the United States as a treatment targeting a genetic cause of ALS

May 3, 2023 – The U.S. Food and Drug Administration (FDA) approved Qalsody (tofersen) for the treatment of SOD1-ALS under the Accelerated Approval pathway. Read more. 

COURAGE-ALS Phase 3 clinical trial second interim analysis did not meet endpoints

March 31, 2023 – Cytokinetics has announced that the COURAGE-ALS (Clinical Outcomes Using Reldesemtiv on ALSFRS-R in a Global Evaluation in ALS) Phase 3 clinical trial will be discontinued. Read more.

The Federal Government announces the National Strategy for Drugs for Rare Diseases

March 22, 2023 – The Federal Government announced the National Strategy for Drugs for Rare Diseases. We are pleased to see this strategy move forward and hope it will be a significant step in building knowledge and improving access to therapies for people living with rare diseases, including the ALS community. Read more.

Health Canada approves Radicava (edaravone) Oral Suspension for use in Canada

November 9, 2022 – Mitsubishi Tanabe Pharma Canada, Inc. (MTP-CA), a subsidiary of Mitsubishi Tanabe Pharma America, Inc. (MTPA), announced that Health Canada has approved the oral formulation of edaravone. This decision came after a 180-day propriety review of the drug’s safety, efficacy and quality. Read more.

ALS Canada to host information on IMD Health to improve quality of health education for people living with ALS

November 3, 2022 – The ALS Society of Canada (ALS Canada) is pleased to be collaborating with IMD Health to provide easily accessible, up-to-date digital health education to healthcare providers, people living with ALS, and their families on the IMD platform. Read more.

CADTH Launches call for patient and clinician input on masitinib

October 6, 2022 – The Canadian Agency for Drugs and Technology in Health (CADTH) has posted a call for patient and clinician input on masitinib. ALS Canada will be preparing a submission reflecting the perspectives, experiences, and expectations of the ALS community. Read more.

ALS Canada Pull to End ALS

September 9, 2022 – It takes more than just pure strength to pull a 42,000-lb transport truck by hand for 100 metres. It takes teamwork and a passionate commitment to pull together for change – for a future without amyotrophic lateral sclerosis (ALS). That’s what teams of 10 will be competing to do on Saturday, October 1 at CityView Toronto, 20 Polson Street as part of the ALS Canada Pull to End ALS. Read more.

Supporters of the ALS cause gear up for change on September 25

September 6, 2022 – Cyclists will gear up for change at the second annual ALS Canada Revolution Ride taking place on Sunday, September 25 in Dundas, Ontario. Read more.

AMX0035 approved as a treatment for ALS in Canada with Conditions

June 13, 2022 – Today, Amylyx Pharmaceuticals, Inc announced that Health Canada has approved ALBRIOZA (AMX0035) under a Notice of Compliance with Conditions (NOC/c). This means the drug is available and can be marketed in Canada with certain conditions. Read more.

ALS Awareness Month brings access to treatments in Canada to the forefront

June 1, 2022 – ALS Canada urges you to raise your hand in support of continuing to build Canada as a primary destination for ALS clinical trials. Read more.

Health Canada accepts New Drug Submission for masitinib.

May 27, 2022 – AB Science announced that Health Canada has accepted its New Drug Submission (NDS) for masitinib. This step triggers a thorough regulatory review of the therapy under the Notice of Compliance with Conditions (NOC/c) pathway. Read more.

Health Canada Accepts Supplement to a New Drug Submission and Grants Priority Review for Oral edaravone

May 13, 2022 – Mitsubishi Tanabe Pharma Canada, Inc. (MTP-CA), a subsidiary of Mitsubishi Tanabe Pharma America, Inc. (MTPA), announced that Health Canada has accepted its filing of a Supplement to a New Drug Submission (SNDS) for an investigational oral formulation of edaravone. Read more.

Access to Therapies: Radicava (edaravone) Update

October 22, 2019 – Edaravone update! Important news for people living with ALS who are currently or interested in accessing Radicava (edaravone): the drug will become commercially available in Canada starting November 5, 2019. Read more.

Remembering our friend Eddy Lefrançois

January 4, 2019 – We are heartbroken to share with you that Eddy Lefrançois, ALS Canada Ambassador, passed away earlier today – a tremendous loss for the ALS community of a champion, advocate and friend.  Read more.

News Releases

Gear up for change on September 24 for ALS Canada’s Revolution Ride

September 19, 2023 – On Sunday, September 24, cyclists will come together to gear up for change at the third annual ALS Canada Revolution Ride in Dundas, Ontario. Participants come together to build awareness and fundraise in support of people living with amyotrophic lateral sclerosis (ALS) and their families. Read more.

Empowering resilience and academic pursuits

September 12, 2023 –The ALS Society of Canada (ALS Canada) and the Kevin Daly Bursary Fund are pleased to announce the recipients of the 2023 ALS Canada Kevin Daly Bursary, granted to post-secondary students who share a personal connection to amyotrophic lateral sclerosis (ALS). Read more.

ALS Canada pulling to make a difference

September 11, 2023 – On Saturday, September 16, the ALS community will come together to “pull” for change at the ALS Canada Pull to End ALS presented by Mitsubishi Tanabe Pharma Canada Inc. A test of skill, grit, and determination, teams come together at York University in Toronto, Ontario to race against the clock to pull a 42,000-lb transport truck – by hand – for 100 metres while raising critical funds to help support the more than 3,000 Canadians living with amyotrophic lateral sclerosis (ALS) and their families. Read more.

Making ALS a priority, today and tomorrow

June 1, 2023 – Today the ALS Society of Canada (ALS Canada) recognizes the start of ALS Awareness Month across the country. Join us as we raise awareness for amyotrophic lateral sclerosis (ALS), a devastating disease that affects more than 3,000 Canadians currently diagnosed and their families. Read more.

Applications open for ALS Canada Kevin Daly Bursary in support of Canadian students touched by ALS

May 16, 2023 – In partnership with the friends and colleagues of ALS community member Kevin Daly, the ALS Society of Canada (ALS Canada) is pleased to announce that applications are now open for the first year of the ALS Canada Kevin Daly Bursary. Read more.

ALS Canada and Brain Canada invest more than $1.4 million in ALS research grants

March 22, 2023 – The ALS Society of Canada (ALS Canada) and Brain Canada are joining forces to invest in cutting-edge discoveries and treatments for amyotrophic lateral sclerosis (ALS). Together, with support from the Dr. Jean-Pierre Canuel Fund – SLA Québec, $1,475,000 will go towards nine Discovery Grants. This program supports projects that are focused on identifying causes of ALS, treatments for ALS or related neurological diseases, and avenues to maximize function, minimize disability, and optimize quality of life for persons and families living with ALS. Read more.

Investing in the future change-makers of ALS research

March 7, 2023 – The ALS Society of Canada (ALS Canada) and Brain Canada are investing in the future of innovative scientists who are changing the landscape of amyotrophic lateral sclerosis (ALS) research and treatments in Canada. Together they are contributing a total of $250,000 to support the 2022 Career Transition Award recipient, Philip McGoldrick, an exciting emerging talent at the Tanz Centre for Research in Neurodegenerative Diseases at the University of Toronto.  Read more.

Major investment in top talent in ALS research

November 24, 2022 – The ALS Society of Canada (ALS Canada) and Brain Canada are powering innovative discoveries and treatments for amyotrophic lateral sclerosis (ALS) through exciting new research funding. Together they are investing a total of $390,000 to support three doctoral awards and one postdoctoral fellowship. These projects will build on existing knowledge of the biological processes that lead to the onset and progression of ALS and explore new therapeutic targets and a possible treatment strategy for ALS. Read more.

ALS Canada Pull to End ALS

September 9, 2022 – It takes more than just pure strength to pull a 42,000-lb transport truck by hand for 100 metres. It takes teamwork and a passionate commitment to pull together for change – for a future without amyotrophic lateral sclerosis (ALS). That’s what teams of 10 will be competing to do on Saturday, October 1 at CityView Toronto, 20 Polson Street as part of the ALS Canada Pull to End ALS. Read more.

Supporters of the ALS cause gear up for change on September 25

September 6, 2022 – Cyclists will gear up for change at the second annual ALS Canada Revolution Ride taking place on Sunday, September 25 in Dundas, Ontario. Read more.

ALS Awareness Month brings access to treatments in Canada to the forefront

June 1, 2022 – ALS Canada urges you to raise your hand in support of continuing to build Canada as a primary destination for ALS clinical trials. Read More.

ALS Canada invests more than $800,000 in the future of ALS research

May 4, 2022 – Investing in specialized training in clinical care and research skills and supporting young minds are two important ways to continue to ensure the advancement of research across all areas related to amyotrophic lateral sclerosis (ALS). The ALS Canada Research Program is proud to announce the awarding of two Clinical Research Fellowships and five Trainee Awards for the 2021 grant cycle. Read More.

ALS Canada Marks Rare Disease Day 2022 By Calling on Ontario to Champion Expedited Access to ALS Therapies

TORONTO, February 28, 2022 – The ALS Society of Canada (ALS Canada) today marks Rare Disease Day 2022 by calling on the Ontario government to champion the urgent need for faster access to approved therapies for people living with Amyotrophic Lateral Sclerosis (ALS) – a devastating terminal disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Read More. 

$1.125 million investment to advance understanding, diagnosis and treatment of ALS

Toronto, February 10, 2022 – With promising new therapies for amyotrophic lateral sclerosis (ALS) on the horizon, now is the time for ongoing investment in research discovery that will continue to fuel the development of treatments. That is why, together with Brain Canada, the ALS Canada Research Program is proud to announce nine new Discovery Grants, which were awarded in late 2021. These leading-edge research projects, led by teams across Canada, have a critical role to play in contributing to global scientific discovery in ALS and improving the lives of people living with ALS and their families. Read more. 

Learning from COVID-19 to strengthen support for Ontarians living with ALS

TORONTO, November 22, 2021 – The in-home support that the ALS Society of Canada provides to people living with ALS is highly valued by the community it serves and is something it had to evolve after the pandemic made physical distancing a public health necessity. And to help with the work needed to effect change, earlier this year, the ALS Society of Canada learned that it had received a $73,400 Resilient Communities Fund grant from the Ontario Trillium Foundation (OTF) that will impact its services across the province. Read More.

ALS Canada Strengthens Board of Directors with four new appointments in 2021/22

TORONTO, May 4, 2021 – We are pleased to extend a warm welcome to Alyssa Barry, Ken Chan, Elizabeth Gandolfi and Dr. Angela Genge who recently joined the ALS Canada Board of Directors. Read More.

ALS Canada thanks outgoing Board members for their commitment to a future without ALS

TORONTO, May 3, 2021 –  With deep appreciation for their contributions of time and expertise, we thank Carol Cottrill, Daniel Riverso and Vincent Quinn whose terms on the ALS Canada Board of Directors have come to an end, and Josette Melanson who becomes Past Chair after serving as Chair of the Board since 2019. Read More.

New $2.85M grant to push ALS research forward

TORONTO, April 23, 2021 –  ALS Canada and Brain Canada join forces with Alnylam Pharmaceuticals and Regeneron to support a collaborative platform that will unite ALS researchers and accelerate breakthroughs. Read More.

Collaboration in Pursuit of a Future Without ALS: $1 Million Invested in ALS Research

TORONTO, February 11, 2021 – The Brain Canada Foundation and ALS Canada are excited to invest $1 million toward eight research teams through the 2020 Discovery Grant Program. Read More.

Ice Bucket Challenge Proceeds Help Fund First Canadian ALS Care and Management Guideline

TORONTO, November 16, 2020 – The Ice Bucket Challenge continues to make an impact. Proceeds from the highly successful 2014 viral sensation have helped fund a comprehensive new resource to guide efforts to ensure people living with ALS in Canada receive the best possible care no matter where they live. Read More.

ALS Doesn’t Stop – So Neither Can Research Investment

TORONTO, November 12, 2020 – The ALS Society of Canada today announced that as part of its 2020 research commitment, the ALS Canada Research Program is investing $650,000 in three new initiatives that will contribute to the development of potential ALS therapies and strengthen ALS clinical care in Canada. Read More. 

ALS Canada welcomes three new Board members in 2020/21

TORONTO, June 19, 2020 – ALS Canada is pleased to welcome Catherine Bélanger, Richard Ellis and Lisa Flaifel to our Board of Directors. Comprised of senior leadership volunteers, our Board ensures ALS Canada is well-governed and donor dollars are maximized to serve our charitable purpose. Read More.

ALS Canada thanks outgoing Board members for dedication to our shared cause

TORONTO, June 16, 2020 – With great appreciation, ALS Canada acknowledges the significant contributions of three Board members whose terms have come to an end, even as their commitment to the ALS cause continues. Read More.

ALS Canada Invests Almost $1.4 Million Towards Innovative ALS Research Projects In Pursuit of a Future Without ALS

TORONTO, November 13, 2019 – After a rigorous competition, the ALS Society of Canada today announced the recipients of the 2019 research funding grants. Through the ALS Canada Research Program, the only dedicated source of ALS research funding in Canada, nearly $1.4 million will be invested in leading-edge ALS research that will further the study of the disease. Read More.

Starting in 2019, Canadians will walk to end ALS

FEBRUARY 6, 2019 – ALS Societies across Canada today unveiled a new name for their signature fundraising event. The “Walk for ALS” has become the “Walk to End ALS” – a bolder and catalyzing name that reflects the rally cry and hope that event participants, donors and volunteers have for a future without amyotrophic lateral sclerosis. Read more.

ALS Society of Canada dedicates last of the matched Ice Bucket Challenge research funding to early-career researchers in pursuit of a future without ALS

TORONTO, December 13, 2018 – The ALS Society of Canada (ALS Canada), together with Brain Canada, today announced $720,000 in funding for six new trainee awards, thus completing the last of the $20 million research partnership with the Brain Canada Foundation (with financial support from the Government of Canada) following the Ice Bucket Challenge. Read more.

Thanks to donor generosity ALS Canada invests $1 million in innovative Canadian ALS research to provide a greater understanding of ALS

TORONTO, November 15, 2018 – The ALS Society of Canada (ALS Canada) today announced an investment of $1 million in eight new research projects being funded in 2018 through the ALS Canada Research Program, which is the only dedicated source of funding for ALS research in Canada. Read more.

ALS Canada Strengthens Partnerships Within the Health Charities Sector

TORONTO – November 7 – ALS Canada is proud to share that Tammy Moore, CEO ALS Canada, has been named Chair of the Board of Directors for the Health Charities Coalition of Canada (HCCC). ALS Canada’s ongoing membership with HCCC helps to bring the perspective of the ALS community to the broader advocacy efforts of health charities in support of better access to care and therapies, increased investment in health research and improved health policy. Read more.

ALS Canada Brings the Eighth Annual Plane Pull to End ALS to Billy Bishop Airport

TORONTO – September 17 – Today, ALS Canada is excited to announce that the eighth annual Plane Pull to End ALS will take place at Billy Bishop Toronto City Airport on Saturday, October 20. Hosted by comedian Justin Landry, this signature fundraising event challenges teams of 10-12 people to work together to pull a 37,000-lb Porter Airlines plane — by hand — 100 meters to raise funds for ALS Canada…Read more.

The ALS Association Partners with the Motor Neurone Disease Association and the ALS Society of Canada to Establish the ALS Reproducible Antibody Platform

WASHINGTON, D.C., March 8, 2018 – The ALS Association, in partnership with the Motor Neurone Disease Association (MND Association) and the ALS Society of Canada, is pleased to announce $600,000 in funding to support the ALS Reproducible Antibody Platform (ALS-RAP). The funding will support the creation of an open-access pipeline to validate antibody research…Read more.

ALS Canada awards $3 million for 12 new research projects to help make amyotrophic lateral sclerosis (ALS) a treatable, not terminal disease

TORONTO, November 22, 2017 – Today, the ALS Society of Canada announced 12 exciting new research projects being funded in 2017 through the ALS Canada Research Program, which is supported by ALS Societies across Canada. The research being funded includes a multi-year study of a promising drug combination, three trainee grants that will help to nurture the next generation…Read more.

Making ALS a treatable, not terminal disease – ALS Societies mark ALS Awareness Month in June

TORONTO, June 1, 2017 – The first day of June marks the beginning of ALS Awareness Month in Canada. And while more Canadians may be familiar with ALS as a result of the Ice Bucket Challenge in 2014, there remains much more work to do to help people understand the devastating impact of the disease, its terminal outcome, and the great need for better funding. Read more.

ALS Canada accredited by Imagine Canada’s National Standards Program

TORONTO, February 21, 2017 – Imagine Canada is a leader in the non-profit sector dedicated to supporting and strengthening Canadian organizations so that they can better support the Canadians and communities they serve. Their national Standards Program was established to build excellence in Canada’s charities and non-profits and to strengthen confidence in the sector. Read more.

Why do some people develop ALS while others do not? Canada joins international research partnership to find answers and better target the disease

TORONTO, January 10, 2017 – Canada has become the 17th country to join an international research partnership that is working to determine why some people develop ALS while others do not, with numerous Canadian ALS researchers stepping up in a cross-country collaboration that is among the first of its kind in the country… Read more.

New Canadian investments in ALS research reflect growing knowledge about the disease and increasing likelihood of effective treatments being developed

TORONTO, November 23, 2016 – The ALS Society of Canada (ALS Canada), in partnership with Brain Canada, today announced $4.5 million in funding for nine new ALS research projects. This means that since the Ice Bucket Challenge became a social media phenomenon in 2014, nearly $20 million has been invested in Canadian ALS research at a time when it has the potential to make the greatest impact…Read more.

Liberal MP Mauril Bélanger Takes the Lead as the National Honorary Spokesperson for the ALS Societies’ Across Canada WALK for ALS

MARKHAM, April 19, 2016 – Six months ago, Liberal MP Mauril Bélanger was running in the federal election, continuing his dedication of over 20 years to serving his constituents in the riding of Ottawa-Vanier. His life changed November 2015, when he was diagnosed with the terminal disease amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s… Read more.

ALS research in Canada receives historic $15 million investment

MONTREAL, November 19, 2015 – On the anniversary of the announcement of the 2014 ALS Ice Bucket Challenge results and partnership between ALS Canada and Brain Canada, the ALS Societies across Canada and the ALS Canada Research Program in partnership with Brain Canada, are pleased to announce the final recipients of the 2015 grant competitions…Read more.

Study Shows Canadians Will Take Action to Fight ALS

MARKHAM, June 2, 2015 – In 2014, over 260,000 Canadians dumped a bucket of ice over their heads and made a donation through the ALS Ice Bucket Challenge. They demonstrated a commitment to fight the terminal disease ALS, commonly referred to as Lou Gehrig’s Disease. The Challenge not only spurred Canadians to rally for the cause, but transformed awareness for the disease that previously was relatively unknown to Canadians…Read more.

ALS Canada Supports the Government of Canada’s Decision to Extend the Compassionate Care Benefit to 26 weeks

MARKHAM, April 21, 2015 – ALS Canada is pleased the Government of Canada has decided to extend the Compassionate Care Benefit (CCB) from 6 to 26 weeks – a benefit that will directly provide much needed financial assistance to Canadian families caring for a loved one with the terminal disease, ALS or amyotrophic lateral sclerosis…Read more.

260,000 Canadians raise over $16 million through ALS Ice Bucket Challenge

OTTAWA, November 19, 2014 – ALS Societies across Canada are pleased to announce the ALS Ice Bucket Challenge in Canada raised $16.2 million due to the generosity of more than 260,000 Canadians. This represents a record for donations to the ALS community in support of Canadians living with ALS and ALS research from one event…Read more.

The ALS Canada Board of Directors is pleased to announce the appointment of Tammy Moore as Chief Executive Officer to ALS Canada, effective November 10, 2014

MARKHAM, November 10, 2014 – The ALS Canada Board of Directors is pleased to announce the appointment of Tammy Moore as Chief Executive Officer to ALS Canada, effective November 10, 2014. Earlier this year, ALS Canada underwent a leadership transition, requiring the ALS Canada Board of Directors to embark on a competitive and comprehensive recruitment process to fill the role of CEO. Upon completing a thorough and rigorous process, Ms. Moore was chosen to execute ALS Canada’s strategic vision… Read more.