https://alsactioncanada.org/donate/

ALS Action Canada, Edmonton, AB (2026)

02/27/2026

With February 28 as Rare Disease Day and as a proud member of the Canadian Organization for Rare Disorders (CORD), we’re pleased to spotlight two initiatives.

First, the Rare Disease Day 2026 Webinar: Accelerated Access Today, Demonstrating Value for 2026 and Beyond 💙

This 1-hour session celebrates the first 1.5 years of Canada’s Rare Disease Drug Strategy (RDDS), highlighting concrete progress in 2025, emerging access pathways, and the policy choices needed to sustain and expand impact for people living with rare diseases.

The webinar also spotlights four successful initiatives from 2025, followed by a forward-looking panel discussion on extending RDDS into 2026 and exploring FAST-style pathways for rare cancers and other rare diseases to help accelerate access.

Missed it? The full recording will be available on CORD’s YouTube channel. Stay tuned and be sure to follow along. 🎥

Next, CORD’s annual Rare Disease Day Conference is taking place April 29-30 in Toronto. You can learn more at https://www.raredisorders.ca/events/upcoming-events.

Thank you to CORD’s leadership in helping define the future of rare disease access in Canada.

02/13/2026

This February, we’re celebrating the love, generosity, and hope that fuel our ALS community – from donors, caregivers, and advocates who continue to show up in meaningful ways.

One powerful example is Sabrina Baker, Chief Changemaker & Founder of Blonde Ambition. Motivated by her father’s ALS diagnosis, Sabrina created the Holding on to Hope collection in support of ALS causes. The collection reflects her ongoing commitment to honour her father’s legacy while helping create greater awareness, funding, and hope for people living with ALS and their families.

“The reality is, ALS needs more. More funding, more research, more hope. This collection is our way of continuing to advocate and raise money for ALS patients and their families, and to do my part to create hope in my dad’s memory. ALS and being a caregiver have forever changed me. I have learned that not a moment is to be taken for granted, to enjoy the little things, cherish those quiet moments, and to LIVE. Spend every day doing what makes you happy, and nothing less.”

We’re honoured to feature Sabrina this February and to share her story of love in action.

Learn more about the collection at blondeambition.ca

02/11/2026

At the end of 2025, Jake Thompson, Co-Founder of Bumpy Road Productions, created a short video to share with his family and friends – a personal reflection on living with ALS, connection, and hope. What he didn’t expect was how widely it would resonate. The video has since reached over 16,000 people, reminding us how powerful real stories can be.

Jake’s video is a beautiful example of how lived experience can create understanding, comfort, and connection – not just for those living with ALS, but for friends, families, and anyone trying to better understand this disease.

We’re grateful to Jake for his joining as a Member of ALS Action Canada, and for sharing his voice and helping shine a light on the human side of ALS.

Watch the full video at the link in our bio. https://www.youtube.com/watch?v=AHYDhIDrHV4 Follow Jake at for more.

01/28/2026

Honouring Börje Salming. Fueling the courage to fight ALS.

Thank you to the Toronto Maple Leafs for honouring the life and legacy of Börje Salming and for donating all net proceeds from the Börje Salming commemorative jersey patch to ALS Action Canada.

This generous support advances patient-led advocacy, access to promising therapies, and more ALS clinical trials across Canada – helping move us closer to a future without ALS.

Available for a limited time while supplies last. Link in bio to learn more.

(https://shop.realsports.ca/products/maple-leafs-salming-commemorative-jersey-patch-blue)

01/21/2026

Learning More About ALS Clinical Trials

We’re sharing an upcoming educational webinar hosted by ALS Canada that may be helpful for people living with ALS, caregivers, and loved ones.

Monday, January 26
1:00 p.m. ET

ALS Clinical Trials Unboxed will explore current ALS clinical trials in Canada and around the world. Dr. Omid Forouzan from Synchron will speak about FOCUS-CAN, an early feasibility study looking at a minimally invasive, implantable brain-computer interface (BCI) for people living with ALS.

This free webinar is an opportunity to learn more about emerging research and to submit questions in advance.

Register via the link in our bio

https://research.als.ca/page/144453/subscribe/1

01/20/2026

Grateful to Federated Insurance of Canada for supporting the ALS Super Fund, led by ALS Action Canada, and for helping bring industries together in support of ALS research.

“Federated Insurance of Canada is a proud supporter of the Ontario Craft Brewers Association and now through that partnership, of ALS Action Canada. By bringing our sectors together for such a meaningful cause, we can create a ripple effect of awareness and funding to advance research toward a cure for ALS.”

Thank you to Federated Insurance of Canada and the Ontario Craft Brewers Association for standing with the ALS community.

StrongerTogether

12/23/2025

As we wrap up 2025, we want to extend our deepest thanks for being alongside us in the fight to end ALS.

This year, you helped drive progress in advocacy, solutions, and community support across Canada on ALS. Every action you took alongside us truly makes a difference - from sharing stories, messages, donations, volunteering and more. The movement continues to build because of you.

Thank you for being part of this collective effort. We are committed to continuing this important work together in 2026.

With gratitude,
ALS Action Canada

12/22/2025

CDA Recommendation for Tofersen

An important policy update for the ALS community: Canada’s Drug Agency has issued a conditional positive reimbursement recommendation for Qalsody (Tofersen) in adults with SOD1-ALS.

Link to article:https://www.cda-amc.ca/sites/default/files/DRR/2025/SR0883-Qalsody-Recommendation.pdf (link in bio)

12/19/2025

We’re proud to share important news from ALS Action Canada.

Our team - led by Advocacy Committee Members Andrew Darke and Cali Orsulak (ALS Action Canada Board Director) - has published a significant patient and caregiver Letter to the Editor in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, a leading ALS journal and the official publication of the World Federation of Neurology Research Group on Motor Neuron Diseases.

“How Effective Does a New Drug for Amyotrophic Lateral Sclerosis Need To Be – The Patient Perspective” raises critical concerns about a trial that could impact the future of ALS drug development and approval.

It responds directly to a 2025 paper by Boddy et al., which suggests using an extremely conservative “minimal important difference” (MID) threshold to judge whether new ALS drugs are clinically meaningful.

It is our view that adopting this criterion prematurely, especially without further academic validation, couldlead to significant restrictions on the approval of many drugs currently in clinical trials and restricting their availability for patients.

For people living with ALS and their caregivers, every opportunity for treatment matters. They deserve better access, stronger pathways to care, and real chances at effective therapies.

We are grateful to our volunteers who work tirelessly to ensure patient and caregiver voices are heard in the most critical spaces shaping ALS research, policy, and access.

Thank you for helping drive patient-led leadership in ALS advocacy.

Check out the link in our bio to read more!

12/12/2025

This month, we are incredibly proud to celebrate one of our own. Louis Del Re — ALS Action Canada Board Member and the recipient of the 2025 Inaugural Augie Nieto Legacy Award — exemplifies the grit, heart, and unstoppable spirit that defined Augie himself.

Louis’s mantra, “Keep On Buzzin,” is more than a phrase. It’s how he moves through the world: with energy, compassion, and a fierce commitment to making life better for families impacted by ALS. His courage and leadership continue to inspire our entire community.

In his own words:

“Facing your mortality at 30 is incomprehensible. It took me to some of the darkest places I’ve ever known and forced me into a level of deep self-reflection I never imagined. Like Augie Nieto, I took immense pride in my athleticism and physical shape. When ALS began stripping those away, I faced a profound identity crisis. Sports had shaped who I was — so I had to ask myself: Who am I now?

I often think Augie must have faced — and overcome — that same battle. And through my own journey, I’m learning what he discovered: being an athlete isn’t just about physical ability. It’s a mindset. It lives in your heart and soul, and nothing — not even ALS — can take that away.

My shift in perspective didn’t happen at one particular moment. It came gradually over time, through people, experiences, and moments that helped reshape my outlook. One of those people was Mark Kirton (“Kirts”). He welcomed me into his circle and into the fight against ALS through and the . He helped me rediscover purpose. I began to see the opportunity in front of me: to inspire others, to lead with vulnerability and humour, and to bring awareness to this disease while living a deeply meaningful life.”

—

🔗 Link in bio to read the full story.

12/05/2025

Thank you to the Edmonton Oilers for boldly leading the growing momentum behind the Courage to Fight ALS campaign.

The Oilers hosted a truly impactful Courage to Fight ALS Night on Dec. 2 that raised awareness, funds, paid tribute to former NHLer and ALS Action Canada Board Director Mark Kirton, and honoured the very first Courage to Fight ALS Award recipient, the Snow Family.

From concourse activations, 50/50 raffles, auction for a special game day experience package, hosting ALS patients and families for meet and greets, to a touching puck drop and featuring ALS patient stories, it was a powerful demonstration of ALS collaboration.

What began as Mark Kirton’s inspiration has sparked a revitalized movement — one that is expanding across North America and bringing new awareness and energy to the ALS community.

Thank you to:

- Jeff Jackson, CEO and President of Hockey Operations for the Edmonton Oilers and ALS Action Canada Board Director, the Edmonton Oilers Community Foundation, and the incredible Oilers fans

- The ALS Society of Alberta for helping power a special Giving Tuesday through their wonderful team and volunteers

- Team Goose for their partnership in creating memorable experiences for people living with ALS and their families.

- and our partner, Charitable Impact

Funds raised through this Courage to Fight ALS Night for the ALS Super Fund will directly support the ALS Society of Alberta to amplify patient voice and fuel research toward a cure. We will share the total amount raised once it’s finalized, and more on what’s next for the Courage to Fight campaign.

12/03/2025

Congratulations to the Snow family - inaugural 2025 Courage to Fight ALS Award recipients.

At the December 2 Edmonton Oilers game, ALS Action Canada was proud to present the first Courage to Fight ALS Award to Kelsie Snow, who accepted the award on behalf of her family, including children Cohen and Willa and late husband Chris. The Award recognizes their extraordinary courage, unity, and leadership in the face of ALS.

The Courage to Fight ALS Award honours a person or family showing exceptional strength in confronting this disease. The Snow family exemplifies that courage through their openness, resilience, and unwavering commitment to raising awareness and funds for a cure.

Inspired by former NHLer, ALS Action Canada Board Director, Co-Founder of the Super Fund and ALS advocate Mark Kirton, the Award will continue to honour those across North America who help drive the movement to help people impacted by ALS.

The Snow family shared their ALS journey with honesty and compassion as Chris Snow - beloved husband, father, and Calgary Flames Assistant General Manager - lived with the disease until his passing in 2023. Together, their storytelling and willingness to let Canadians into their experience helped deepen national understanding of ALS and the strength of those who face it.

Kelsie continues this impact today through her role with the ALS Society of Alberta as Project Manager for the Alberta ALS Research Network (AARN), as well as through her writing, podcast and community and organizational partnerships.

Today, we honour Chris, Kelsie, her children, and the entire Snow family.

ALS Action Canada