This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. […]
Annual report 2023: Empowering informed decisions
ALS Canada’s work is empowered by community. Discover how, in 2023, our work within the ALS community helped people affected by the disease feel empowered and informed to make decisions and engage in advocacy efforts. Empowering advocacy with the ALS Canada Canadian ALS Learning Institute The landscape of ALS research is ever-changing as researchers continue […]
ALS Canada Advocacy Update – January-March 2024
This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. […]
ALS community calls on the Ontario government to invest $6.6 million in Budget 2024 to address urgent disparities in access to ALS services and care
Implementation of the Ontario Provincial ALS Program is critical for addressing the urgent needs of Ontarians living with ALS and their families Toronto – Today, people living with amyotrophic lateral sclerosis (ALS) and their caregivers join the ALS Society of Canada (ALS Canada) and physicians from Ontario’s five regional multi-disciplinary ALS Clinics for a Day […]
Ontario Provincial ALS Program: Enhancing care and quality of life of people living with ALS
In Canada, what the provincial health care systems provide does not always match the needs of people living with ALS. This statement rings true for Ontario, where the current ALS care and support landscape in the province presents people living with ALS with significant challenges that demand immediate action. The Issue The impact of an […]
ALS Canada Advocacy Update – October-December 2023
This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. […]
ALS Canada Advocacy Update – July-September 2023
This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. […]
Meet nine Canadian researchers moving ALS research forward with the help of the ALS Canada-Brain Canada Discovery Grant Program
In March 2023, the ALS Society of Canada and Brain Canada announced the latest round of Discovery Grant recipients from their 2022 research grant competition. With support from SLA Québec and the Dr. Jean-Pierre Canuel Fund, nine Canadian researchers and their teams received a total of $1,475,000 in funding to fuel innovation that will accelerate […]
ALS Canada Advocacy Update – April-June 2023
This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. […]
Qalsody (tofersen) has been approved in the United States and the European Union as a treatment targeting a genetic cause of ALS
On April 25, 2023, the U.S. Food and Drug Administration (FDA) approved Qalsody (tofersen) for the treatment of SOD1-ALS under the Accelerated Approval pathway. On May 30, 2024, the European Commission (EC) has granted marketing authorization for Qalsody (tofersen) under exceptional circumstances. This blog post explores information on the therapy and discusses what this approval […]
ALS Canada Advocacy Update – January- March 2023
This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. […]
A day for action for the Rare Disease community
Today, February 28, marks Rare Disease Day. A day that provides the ALS Society of Canada (ALS Canada) a chance to bring awareness to the disease alongside other potentially lesser-known diseases to work together towards equity in health care, and access to diagnosis and therapies. Rare Disease Day helps to shed light on the lack […]
ALS Canada Advocacy Update – October – December 2022
This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. […]
You’re supporting the ALS community today and tomorrow
It’s been 15 years since my cousin Doug, who was like a big brother to me, was diagnosed with ALS. Our options were limited then with only one approved therapy available. We didn’t know what to do and who to turn to as we navigated the bend in the road. Today, when I reflect on […]
ALS Canada to host information on IMD Health to improve quality of health education for people living with ALS
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. Empowering Canadians affected by ALS to be informed consumers of ALS information is one of the cornerstones of […]
Frequently Asked Questions – ALBRIOZA (AMX0035)
Last Update: September 1, 2023 GENERAL What is ALBRIOZA (AMX0035)? ALBRIOZA (sodium phenylbutyrate/ursodoxicoltaurine) is indicated for the treatment of people living with amyotrophic lateral sclerosis (ALS). Sodium phenybutyrate is a histone deacetylase inhibitor that is believed to reduce a mechanism known as endoplasmic reticulum stress (ER stress) that may contribute to motor neuron degeneration in […]
ALS Canada Advocacy Update – April – June 2022
This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. […]
ALS Awareness Month brings access to treatments in Canada to the forefront
Toronto – The ALS Society of Canada (ALS Canada) joins the global ALS community in recognizing June as ALS Awareness Month. More than 3,000 Canadians live with amyotrophic lateral sclerosis (ALS), a neuromuscular disease that paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are […]
Raise your hand in support of continuing to build Canada as a primary destination for ALS clinical trials
History and context Canada has a rich history in ALS clinical trials. Though an ALS research community developed here alongside the rest of the world in the late 1970s and 1980s, Dr. Andrew Eisen at Vancouver General Hospital is widely regarded as the first ALS clinical trialist in the country, leading a double blind, placebo-controlled […]
Knowing the issues that matter to Ontario’s ALS Community: 2022 Ontario Election
Now more than ever it is important to know the issues that matter to you before you cast your ballot on Thursday, June 2nd , 2022. ALS Canada reached out to each major political party to get more details about how they, if elected, would support access to therapies for the Canadian ALS community. We […]
Breaking Down Barriers to Accessing Therapies: Changes to PMPRB Regulations
Over the past several years, ALS Canada, together with the ALS community and a coalition of patient groups across Canada, has raised the alarm about the consequences of the proposed changes to Patented Medicine Prices Review Board (PMPRB) regulations for Canadians. Our concern was that the new proposed changes – which included additional price regulatory […]
ALS Canada Marks Rare Disease Day 2022 By Calling on Ontario to Champion Expedited Access to ALS Therapies
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 […]
MAKE YOUR VOICES HEARD: YOUR INPUT IS NEEDED FOR REVIEW OF NEW ALS THERAPY
Update: July 7, 2022: Following Health Canada’s approval of ALBRIOZA (AMX0035) under a Notice of Compliance with Conditions (NOC/c), CADTH posted reimbursement recommendations for ALBRIOZA (AMX0035) in late June. ALS Canada provided feedback on the recommendations, bringing forward the perspectives of the ALS community to help ensure alignment with the realities of the diagnosis and […]
The Time is Now: All ALS Therapies should be granted priority review
Health Canada recently began its review of AMX0035 to assess the therapy’s safety, efficacy, and quality. This process began in August when Health Canada accepted the manufacturer’s New Drug Submission (NDS). There are two timelines under which Health Canada conducts drug reviews: Standard Review, which is almost a one-year process (300 days) Priority Review, which […]
Knowing the issues that matter to the ALS Community: ALS Election Commitments
The 2021 federal election is wrapping up in less than a week! With Election Day scheduled for Monday, September 20, 2021, now more than ever, it’s important to know the issues that matter to you before you cast your vote. ALS Canada reached out to each major political party to get more details about how […]
How new drugs become approved and accessible to Canadians
Earlier this year, manufacturer Amylyx announced that it plans to pursue Health Canada approval for its AMX0035 therapy. We’ve updated the blog post we first published back in 2018 about how new drugs become accessible in Canada to help orient you to the steps involved, their purpose, the milestones along the way and the timelines […]
Provide your input into shaping a national strategy for rare disease drugs
ALS may not be considered rare by all. But the community of approximately 3,000 Canadians living with the disease today is small enough to face unique challenges, with access to therapies – from clinical trial to reimbursement – being a significant one. As the Government of Canada considers how best to create a national strategy […]
June 2020 PMPRB Draft Guidelines
Updated August 5, 2020 BACKGROUND: In December 2017, the federal government proposed amendments to the Patented Medicines Regulations. These guidelines govern how the Patented Medicine Prices Review Board (PMPRB) sets the price at which companies sell their drug to distributors across the country. The PMPRB Amended Regulations were published in August 2018 in the Canada […]
Together we are stronger: The ALS community takes to Ottawa
In early March, members of the ALS community joined ALS Canada in Ottawa for two days of advocacy training and meetings with politicians and other government officials. From people living with ALS and their caregivers and family members to researchers, clinicians and volunteers, our delegation of 35 people made the following asks of the federal […]
Access to Therapies: Radicava (edaravone) Update
Updated March 10, 2021 Updated October 5, 2020 Updated May 28, 2020 Updated May 19, 2022 Updated January 19, 2023 Originally posted October 22, 2019 In October 2018, Health Canada approved Radicava (edaravone) for use in Canada. As edaravone continues to move through the drug access pathway to become available to Canadians, there will […]
COVID-19 Update: A message from our CEO
Dear ALS Community, ALS doesn’t stop. Neither will we. We understand what a challenging time this may be for people affected by ALS. The COVID-19 pandemic amplifies the many unknowns and the concerns that come with the realities of the disease. We want you to know we are here for you. Our Regional Managers are reaching […]
Radicava (edaravone): Take Action for Access
In October 2018, a new ALS treatment called Radicava was approved by Health Canada. It’s one of only two treatment options available to people living with this terminal disease. Today, over a year later, Radicava is still not available to Canadians through public drug plans. We want to change that. Join us in advocating for […]
Understanding the Issues: 2019 Federal Election Health Commitments
With the 2019 federal election campaign underway, are you curious about what the parties are saying about the issues that could affect Canada’s ALS community? ALS Canada asked each of the major parties what they would do, if elected, to help people and families affected by ALS. Specifically, we asked them about how they would […]
Because Of You: ALS Canada’s 2018 Annual Report
Every day, more than 3,000 people and families throughout Ontario and Canada live with the realities of ALS, a devastating disease that takes away dreams, abilities, and lives. But for all ALS takes, it cannot take away our shared desire for a future without this disease. We rely on you – our generous donors – […]
It’s about time to change the reality of ALS
ALS is always about time. How much time do I have? How much time until I can’t hug my children? How much time until I can no longer walk, or eat, or breathe? It’s about time we change that. It’s about time we stop ALS from shattering dreams, from devastating lives. It’s about time to […]
Augie’s Quest and ALS Research in Canada
For the second year in a row, Orangetheory Fitness is giving its members (and the community) a way for you to make an impact while getting in a good workout. It’s a win-win! On May 1, 2019, Orangetheory Fitness is launching a campaign throughout Canadian studios to benefit the ALS Canada Research Program. Their inaugural […]
ALS Research Matters
The realities of living with ALS – a challenging and terminal disease – led Carol Skinner and Eddy Lefrançois, two Canadians affected by ALS, to start a letter-writing campaign. The campaign encouraged fellow Canadians to contact their elected federal representative to ask for sustainable and direct ALS research funding. Over 2,300 Canadians joined Carol and […]
Health Canada has approved Radicava (edaravone), a second ALS treatment for Canadians
Highlights: On October 4, Health Canada approved Radicava (edaravone) for the treatment of ALS. Health Canada’s terminology for this approval is called a Notice of Compliance, or NOC. The approval follows a 180-day priority review of the drug. Approval from Health Canada means that Radicava (edaravone) can be marketed and sold in Canada. Other considerations, […]
Radicava (edaravone): Make your voice heard
Updated July 18, 2018 The Canadian Agency for Drugs and Technologies in Health (CADTH) recently posted an open call for patient input on Radicava (edaravone). This is an additional step along the approval and affordability pathway for the drug, which is currently being reviewed by Health Canada. In response to CADTH’s call for patient input, […]
How new drugs become approved and available to Canadians
With the news that manufacturer MT Pharma is pursuing the regulatory channels necessary to bring the drug edaravone to Canada, the ALS community in this country finds itself facing the possibility of a second treatment option nearly 20 years after riluzole was approved. But how does any new drug become approved in Canada – and […]
MPs give ALS a voice in Parliament
In 2016, a group of parliamentarians and senators from all major political parties united to bring awareness to the challenges facing Canadians living with ALS. Chaired by Francis Drouin, MP for Glengarry-Prescott-Russell, the creation of the ALS Caucus on Parliament Hill was a significant achievement, and ALS Canada is proud to have played a role […]
Government of Canada has announced the activation of the extension of the Compassionate Care Benefit (CCB) from six to 26 weeks
We are pleased to advise you that the Government of Canada has announced the activation of the extension of the Compassionate Care Benefit (CCB) from six to 26 weeks. Effective January 3, 2016, caregivers can now claim up to $13,624 in benefits, where previously it was $3,144. We hope this announcement will now relieve some […]