“While I still can, I will inspire my community to learn about ALS”: Jane’s story

There’s hardly a spot left on Jane’s left arm these days. That’s because so many of her family, friends, and neighbours are getting a tattoo with Jane — they choose one that’s meaningful to them and Jane gets the same one on her own arm. This shared bond will be an everlasting part of her […]

“While I still can, I will focus on what’s possible”: Steve’s story

Steven Gallagher has chosen hope and optimism over despair and gloom time and time again; H-O-P-E are four letters that have guided him over the past three years and throughout his life. Those who follow Steve on social media know he has been very open and vulnerable about his experience with ALS since being diagnosed […]

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. […]

“While I still can, I will cherish my time with my children”: Anne-Marie’s story

Anne-Marie Marcil considers herself the luckiest unlucky woman. Last year, in April, amid all the uncertainty of the pandemic, she was diagnosed with ALS at just 46 years of age. As a mother to two young daughters, aged seven and 10, this profoundly and unexpectedly changed her outlook on life. “I do not dwell on […]

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: August 11, 2022 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 […]


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 […]

Giving back honours a father’s sacrifice and untimely passing

Lolo Lam has a deep sense of gratitude for the sacrifices her parents made leaving Hong Kong so she and her two brothers could have a better life in Canada. She was only a child at the time, but she still remembers her parents taking her to a protest rally during the summer of 1989 […]

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 […]

How charitable action inspired a cross-Canada bike journey

Last spring, Mike Leech, 59, approached his plant manager to request a 2-month leave from work to complete a bike ride across Canada for charity. An avid cyclist, he dreamed of cycling coast to coast but he wanted to make it more than just a physical challenge. He wanted to raise awareness and money for […]

Loss and healing: A 900-km bike ride to drive ALS awareness

Miles4Matty is part of Adam Foley’s search for meaning after losing his brother, Matthew (aka Matty), who passed of ALS in 2014 at the age of 38. Adam and Matthew were roommates at the time of the diagnosis. When Matthew’s mobility became a significant challenge, they moved into a more accessible apartment together where Adam […]

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 […]

Paying it forward to benefit people with ALS in the future

Deirdre O’Connor and her husband, Floyd, became ALS Canada donors 15 years ago. At the time, they had no personal connection to the cause, but they liked the fact that ALS Canada was a small, cost-effective charitable organization without a lot of overhead. Deirdre’s generosity extends to half a dozen or more organizations she supports […]

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 […]