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 email@example.com.
All Provinces Now Listing Radicava (edaravone)
November 23, 2021 – The province of Prince Edward Island (PEI) has listed Radicava (edaravone) on the public formulary under Special Authorization as a treatment for ALS. With this announcement, all provinces and territories across Canada – as well as Veterans Affairs Canada and Indigenous Services Canada – are now covering Radicava through their public formularies. Read more.
Phase 3 Valour results for tofersen presented by Biogen
November 1, 2021 – The Phase 3 VALOR results for tofersen did not show a statistically significant change in disease progression as assessed by the ALSFRS-R scale, however a number of other outcome measures suggested the treatment was able to have an effect on people with SOD1-ALS. As more open label extension data is shared, and further discussion across the field occurs, there will be a stronger consensus on what the data reveals about tofersen. Read more.
CADTH launches call for patient input on AMX0035
October 27, 2021 – Make your voice heard! The Canadian Agency for Drugs and Technology in Health (CADTH) has posted a call for patient input on AMX0035. ALS Canada will be preparing a submission reflecting the perspectives of the ALS community and we are inviting you to contribute. In early November, you will have the opportunity to participate in a survey where you can share your perspectives, experiences and expectations for the therapy. Read more.
Phase 3 Valour results for tofersen presented by Biogen
October 19, 2021 – The ALS community has been eagerly anticipating the results of the Phase 3 VALOR trial for tofersen, an experimental drug being evaluated as a therapy for a genetic form of ALS caused by mutations in the gene SOD1. The results were presented earlier this week at the American Neurological Association (ANA) 2021 virtual meeting. Read more.
Health Canada Accepts New Drug Submission for AMX0035
August 31, 2021 – Today Amylyx announced that Health Canada has accepted its New Drug Submission (NDS) for AMX0035. Read more.
Amylyx Files New Drug Submission for AMX0035
June 14, 2021 – Today Amylyx announced it has filed a New Drug Submission (NDS) to Health Canada for its ALS therapy AMX0035. Read more.
Phase 3 clinical trial for arimoclomol does not show benefit to people living with ALS
May 7, 2021 – Biopharmaceutical company Orphazyme A/S announced today that the ORARIALS-01 pivotal trial of the drug arimoclomol did not meet its primary and secondary endpoints to show benefit in people living with ALS. No important safety signals were reported in the trial. Read more.
Discovery Grants competition – launching today!
May 7, 2021 – Together with the Brain Canada Foundation, the ALS Society of Canada is excited to announce the continuation of their much-valued partnership with a $1-million Discovery Grants competition – launching today! Read more.
Amylyx announces plans to submit a Health Canada application in early 2021
March 9, 2021 – Today Amylyx announced plans to submit a New Drug Submission (NDS) to Health Canada in the first half of 2021 for its AMX0035 therapy. In addition, the company will explore options for early access to AMX0035 in Canada, including a potential special access program (SAP), and aims to finalize plans by the end of the second quarter of 2021. Read more.
COVID-19 vaccination: Update for the ALS community
March 5, 2021 – Today the province of Ontario published details of its Phase 2 vaccination plan for COVID-19, including priority populations. People living with ALS have been identified within the highest-risk population that will be given priority. Phase 2 vaccinations are expected to take place from April to July 2021, depending on vaccine availability. More information is available on the province’s website.
Call for applications: ALS Canada Community Fellows Pilot Program
February 22, 2021 – For the first time, we are pleased to be accepting applications from people living with ALS and personal caregivers who are interested in attending the ALS Canada Research Forum as Community Fellows. Application deadline is March 8, 2021. Read More.
Remembering Carol Skinner
February 4, 2021 – With great sadness, we recognize the incredible contributions of Carol Skinner, who passed away last weekend. Diagnosed with ALS in 2013, Carol soon after became an ALS advocate and an ambassador for ALS Canada. Read More.
COVID-19 vaccination: Update for the ALS community
February 3, 2021 – Just over a year since the first case of COVID-19 was diagnosed in Canada, vaccines have been developed and procured by the federal government. Provinces and territories are responsible for developing a vaccination strategy and delivering the vaccine to their populations. But what does this mean for families living with ALS? Read More.
ALS Canada named one of Canada’s Most Admired Corporate Cultures™ in 2020
November 26, 2020 – The ALS Society of Canada (ALS Canada) is excited to be recognized as one of Canada’s Most Admired Corporate Cultures™ in 2020 by Waterstone Human Capital. This national program identifies organizations with a best-in-class culture that fosters high performance. Read More.
Gear up for Change!
November 23, 2020 – ALS Canada is excited to announce the launch of the ALS Canada Revolution Ride! Created to inspire and spark action, this volunteer-powered annual cycling event will support the ALS community as we collectively “gear up for change” and help create more hope for a future without this devastating disease. Read More.
ALS Canada’s online holiday pop-up shop is live until November 3, 2020!
October 13, 2020 – This holiday season, you can support the ALS community by purchasing a meaningful gift that creates impact. Shopping at the pop-up shop isn’t just checking off an item from your list – you’re increasing awareness about the disease and supporting people and families living with ALS. Give a gift that continues to give support. All net proceeds from your purchase will go toward investment in community-based support services in Ontario, provincial and federal advocacy initiatives, and research toward a future without ALS. Shop now.
Long-Term Data for CENTAUR clinical trial of AMX0035 supports a further possible benefit for people with ALS
October 16, 2020 – A study published today in Muscle & Nerve on the long-term data from the CENTAUR clinical trial and open-label extension shows that AMX0035 has promise for extending survival in people living with ALS. Read More.
Phase 2 CENTAUR clinical trial for AMX0035 shows promising results
Discovery Grants competition – launching today!
August 7, 2020 – Together with the Brain Canada Foundation, the ALS Society of Canada is excited to announce the continuation of their much-valued partnership with a $1-million Discovery Grants competition – launching today! Read more.
Promising results from Phase 1/2 clinical trial of tofersen
July 9, 2020 – A study published today in the New England Journal of Medicine shows that an experimental drug, called tofersen, has promise for treating a genetic form of ALS caused by mutations in the gene SOD1. Read more.
Radicava (edaravone) listed under Exceptional Access Program in Ontario
May 28, 2020 – The province of Ontario has listed Radicava (edaravone) on the public formulary as a therapy accessible through the Ontario Drug Benefit Formulary Exceptional Access Program (EAP) as a treatment for ALS. This decision comes approximately one month after the conclusion of pCPA negotiations and demonstrates that working together we can make a difference. Read more.
May 1, 2020 – The safety of the ALS community is our top priority. In light of the emerging situation with coronavirus (COVID-19) and actions being taken to contain it, we know that many of you may have questions about what our services, support and events will look like in the coming weeks. 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.
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.