Your messages of hope, strength and resiliency during the holiday season

What is community? It’s where we find people with whom we can share experiences. Community is where we are relentless in our efforts to change ALS forever. It’s where we come together and use our voice to fight for each other. To build resilience.   Community is where we come together to connect meaningfully. A […]

My brother Andrew, my only sibling, my closest friend.

Stories like the one below from the community are so important and really help people feel connected to one another. Right now we are collecting short stories and messages of hope from people like you so that we can share them with the community throughout the holiday season. You can contribute here. I always found […]

ALS Research Update, November 2020

While 2020 has been an unpredictable and challenging year on many fronts, the ALS Canada Research Program continues to observe positive momentum in ALS research. This month you’ll learn about results from two different Phase 2 clinical trials in ALS; the normal function of the C9ORF72 protein; the role of perisynaptic Schwann cells at the […]

ALS gave me a different perspective

Here and now. After a year and a half of undiagnosed symptoms and testing, in November of 2018 I was diagnosed with ALS. I really remember that day as a transformative one. One moment my doctor was dropping the weight of the world on my shoulders by telling me I have ALS, and the next […]

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

Toronto – 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. The first Canadian Best Practice Recommendations for the […]

ALS Doesn’t Stop – So Neither Can Research Investment

The ALS Canada Research Program awards $650K for three innovative new research initiatives, with an additional $1 million to be announced in 2021 TORONTO – 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 […]

Maintaining dignity, independence and safety through ALS Canada’s Equipment Loan Program

Mark Vivarais was almost in tears as he walked back to his wife, Sandra, from a washroom at an outdoor outlet mall in Florida. He’d been stuck in there for half an hour, struggling to pull himself up from the low toilet seat. “That’s when it hit me,” Sandra recalled. “Oh my god, this is […]

Thanks to our ALS Canada Research Forum sponsors for standing with us

You don’t need us to tell you that 2020 has thrown everyone and everything for a loop. A few months into the year, we all found ourselves having to adapt very quickly to mitigate the unknowns of the COVID-19 pandemic. For ALS Canada, that meant cancelling the 2020 edition of our annual ALS Canada Research […]

Tips for successful virtual fundraising

Every year, hundreds of community events take place across Ontario, raising critical awareness and funds toward a future without ALS.  With the pandemic changing the way we work, dine and live, our dedicated community is adapting how they fundraise, too. We’ve compiled a list of some of the amazing and creative ways ALS Canada event […]

ALS Research Update, August 2020

The ALS Canada Research Program is encouraged by the continued momentum seen in ALS research at a time when support for it is more important than ever before. Read about the progress researchers have made in advancing new treatment strategies, understanding the effectiveness of riluzole in the real world; and learning how ALS develops and […]

COVID-19 and the impact of your donor dollars

Because of supporters like you, in addition to the $10,000 match that was offered by ALS Canada’s dear friend, Deirdre, $24,000 was raised for the ALS Canada COVID-19 Urgent Response Fund and it has helped to evolve our programs for people and families living with ALS. How has the COVID-19 Urgent Response Fund made a […]

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 […]

For What Counts: ALS Canada’s 2019 Annual Report

Now is the time for change. More than 3,000 people and families throughout Canada continue to face the profound emotional, financial, and psychological impact of living with ALS. Their collective experience is core to every action we take and decision we make. And every person affected by this devastating disease is reason enough for our […]

ALS Canada community support services continue to evolve during COVID-19

How support services are changing In the wake of the COVID-19 pandemic, our number one priority was to support the safety of the ALS community and our staff, and as a result, we quickly pivoted to moving all ALS Canada office staff to working remotely from home and made changes to our service model to […]

The virtual Walk to End ALS was a day to remember

I reached out to you on June 1 to invite you to join us in 21 Days to Make a Difference. You embraced the daily activities across social media platforms and openly shared your stories, photos, memories, and experiences. What I saw happen online was a community that came together in anticipation of something big! […]

Team “Living into a Cure” is keeping hope alive

Charmaine Loverin, who was diagnosed with ALS last year, has stayed positive through tremendous change and upheaval imposed by the disease, especially during the COVID-19 crisis. She left her home and relocated to Belleville to live with her sister, Michelle, who reached out with “open arms.” After the move, Charmaine returned to Toronto on a […]

ALS Canada welcomes three new Board members in 2020/21

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. Like their fellow Board members, our three newest appointees bring expertise from a range of […]

You’re invited to the Walk to End ALS virtual finish line!

This Sunday (June 21) at 11:00am ET, you are invited to join ALS Canada’s Walk to End ALS virtual finish line – our biggest online celebration ever!  What is the virtual finish line? For one hour, we’re taking to the virtual airways for a live-streaming celebration unlike anything you’ve ever seen before. There will be […]

A Duty to help

ALS shatters dreams no matter when it strikes. For Deane Gorsline, 31, and his wife, Danielle, living with ALS means letting go of a lifetime of dreams. Focusing on the present helps them stay positive, whether it’s enjoying precious time with their new puppy, Trigger, or supporting the ALS community they belong to by joining […]

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

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. Thank you to Ron Foerster, Dr. Angela Genge and Patrick Merz for your gifts of leadership, time and expertise. Dr. Genge and Patrick were both appointed […]

Resilient spirit sparks desire to live well and to give back

Marla Dahlke says she was like “a deer in the headlights” when doctors told her she had ALS last year. She’s since had time to process that information, adapt to her new reality, and reconnect with her resilient inner voice. “You can only feel sorry for yourself for so long and even you get sick […]

Daughter raises record amount for virtual Walk to End ALS

Jocelyne Gall is doing her best to support her dad, Bill, who was diagnosed with ALS in July 2018. As the only child of divorced parents, she is the only family member attending to her dad’s needs – and with three young children of her own, she has a lot to manage. While her situation […]

Day 8: Get creative!

Haven’t yet decided how you’re going to do the Walk to End ALS in your own way on Sunday, June 21? You need not look further than the Ice Bucket Challenge to know that the ALS community is creative and resilient, so they’ve got you covered! Here are just a few innovative ways our community […]

Uncharted territory just “part of the journey” for 2020 virtual Walk participants

Even a high level of awareness about ALS cannot fully prepare anyone for what it takes to navigate the changes that occur as the disease progresses. Charlotte and Bob Brethour have faced many difficult hurdles, but they still appreciate every day they share together, “even when the best-laid plans have gone awry,” says Charlotte. “We’re […]

How you can get ready for ALS Awareness Month

The countdown is on! ALS Awareness Month kicks off June 1 and this year it’s all about bringing us together online so that we can continue to build community and create visibility, even while we distance physically. Because even though the world is different right now, one thing hasn’t changed – WHY you want to […]

ALS Research Update, May 2020

Welcome to the May 2020 ALS Research Update. During these times of uncertainty, it’s reassuring to know that ALS research developments continue around the globe. This month you’ll learn about progress researchers have made in advancing new treatment strategies; developing laboratory models to better understand ALS; and learning how ALS develops and progresses in the […]

Meet Steven, aka Superman, Batman, or the Hulk

Steven Gallagher knows what he’ll be doing on June 21 this year – but the big question is whether he’ll be doing it as Superman, Batman, the Hulk or another superhero. Marvel or DC Comics? Gallagher doesn’t discriminate – he just knows that superheroes are a powerful and inspiring embodiment of what he’s facing right […]

Your Walk, your way: Getting ready for June 21

UPDATE: Starting June 3, we will be hosting Live Well Wednesdays, special mini events via livestream where you can learn a new skill, have fun with your family, and connect with the ALS community: June 3: Yoga for all ages & stages June 10: Cooking Class June 17: Art class: DIY Walk t-shirts During each […]

COVID-19 Update

Thanks to our engaged community who serve on our Board, Councils and Committees, we are staying informed and we’ve been able to make timely and effective changes to our programs so we can continue to provide community-based support services at a distance. To help people affected by ALS during the COVID-19 crisis, ALS Canada Regional […]

Celebrating the strength of ALS Canada’s volunteer community

ALS doesn’t stop and neither will we. Even during these unprecedented times, ALS Society of Canada volunteers continue to give their time and skills to support people and families living with ALS.   Over the past week, in recognition and celebration of National Volunteer Week 2020 #NVW2020, you’ve had the chance to get to know some of our […]

Ice Bucket Challenge continues to drive research discovery by providing new insights into ALS

Within the brain, neurons are constantly communicating with each other. These communications can be inhibitory or excitatory, essentially like a stop or go signal. For our brains to function properly we need to have a balance between these two signals. Having too much of the excitatory, or “go” signal, has been linked to a variety […]

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  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 continue to be important updates for those in our […]

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 […]

Luckiest of the unlucky: keeping a positive mindset in the face of ALS

Norman MacIsaac says he’s the “luckiest of the unlucky.” His legs, arms and hands are failing him, his voice is weak, and his speech is slow and laboured, but he refuses to let ALS stifle his positivity. Norm has been on “voice rest” all day, so when we reach him by phone at his home […]

Can an animal model provide new insights into the formation of stress granules?

Alicia Dubinski may have inherited both her love for science and studying a neurodegenerative disease from her mother, a neuroscientist at the University of Toronto. When Dubinski was still a graduate student at the University of Waterloo, she met Dr. Christine Vande Velde at l’Université de Montréal in the Spring of 2019. She knew right […]

ALS Canada: Committed to the bright future of Canada’s ALS researchers

We are thrilled to share that the revamped ALS Canada Career Transition Award is accepting applications until Friday, February 21, 2020. This competition will help to support the next generation of scientists working toward a future without ALS. Originally launched in 2015, the competition ran for two years in partnership with Brain Canada (with the […]

Can new understandings about nuclear speckles lead to new treatment options for ALS?

In 2018, Dr. Ulises Rodriguez Corona was looking for a new research field where he could apply his knowledge and expertise in the biology of protein production in cells and the genetic instructions that control their behaviour. When he learned of an opportunity to perform high-tech research on protein-protein interactions in RNA metabolism in Dr. […]

Could newly discovered tags on TDP-43 protein explain its abnormal behaviour in ALS?

Overhearing one conversation was all it took to spark a new idea that became a funded ALS research project. Terry Suk, a PhD student working in the lab of Dr. Maxime Rousseaux at the University of Ottawa, heard Dr. Rousseaux and another student discuss a list of proteins in the brain that are modified by […]

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 […]

Is the loss of normal function of C9ORF72 protein in a particular cell type a key driver of ALS disease processes?

Rahul Kumar has a burning curiosity to uncover the biological mechanisms driving neurodegenerative diseases. After finishing his combined Bachelor of Science/Master of Science degrees at a prestigious research institute in India, he moved to Canada so he could work on ALS research. He joined Dr. Peter McPherson’s lab at the Montreal Neurological Institute and Hospital […]

Top 10 Research Stories of 2019

2020 is shaping up to be another exciting year in ALS research discovery. Last year, major scientific advances in Canada and internationally led to significant and exciting progress in ALS research. As identified by the ALS Canada Research team, here are the most newsworthy research stories of 2019 that provide hope for what’s to come. […]

What is the role of a newly discovered protein in ALS?

Myriam Gagné was not expecting to work on ALS research. But the first time she saw Dr. Christine Vande Velde’s lab at l’Université de Montréal, it was “love at first sight.” Studying ALS would allow her to combine basic cell biology, neurosciences and biochemistry, her main academic areas of interest. She joined the lab in […]

Is an experimental drug that can prevent abnormal protein behaviour in ALS already out there?

When Marc Shenouda first learned about ALS as an undergraduate science student, he found himself asking many questions: Why is the average life expectancy only two to five years after diagnosis? Why is there is no cure yet? How can we find better treatments, ones that could extend life by more than a few months? […]