ALS Action Canada (2026)

23/12/2025

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

22/12/2025

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)

19/12/2025

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.

05/12/2025

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.

03/12/2025

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.

27/11/2025

Canada’s Drug Agency (CDA) has opened its 2026 Vital Signs review focused entirely on ALS.

This national process will influence how ALS treatments are evaluated and accessed in the years ahead - and the ALS community’s voice is essential.

CDA is inviting individuals and organizations who care about ALS to sign up for updates and opportunities to be involved, including:

- Providing feedback on draft documents
- Participating in consultations
- Attending webinars
- Staying informed as the review progresses

If you want to be notified or take part, complete the interest form on CDA’s website: https://www.cda-amc.ca/2026-vital-signs-amyotrophic-lateral-sclerosis
(Open Nov. 14, 2025 - Due Aug. 31, 2026) (link in bio)

ALS Action Canada will continue to advocate for urgent access, stronger policy, and meaningful representation throughout this process.

Together, we can ensure ALS is treated with the urgency it demands.

25/11/2025

The fight to end ALS can’t wait - and neither should we.

This Giving Tuesday (Dec. 2), your support fuels the ALS Super Fund, directly powering:

Advocacy: Amplifying patient voices and driving policy change across Canada
Solutions: Investing in high-impact research and treatment initiatives
Community: Advancing support for patients and caregivers

Every dollar counts. Every action matters. Together, we turn solidarity into action.

Donate and make an impact: https://my.charitableimpact.com/campaigns/als-super-fund-together-we-endals?type=campaignprofile&sourceid=undefined&profileid=1555 (link in bio)

11/11/2025

Remembering Captain Deane James Gorsline, CD

We honour the life of Deane Gorsline, a veteran who served our country with distinction - including a tour in Afghanistan and later with Special Operations Forces. Deane was a founding member and first Chair of ALS Action Canada. Deane’s courage, discipline, and vision continue to inspire us.

Deane passed away from ALS in 2023 at the age of 33. People who have served in the military are twice as likely to develop ALS than those who have not. His dedication to advancing treatment options for all Canadians living with ALS leaves a lasting legacy. He received media attention in 2021 when he walked for “1,700 minutes, a total of 28.3 hours, in honour of roughly 1,700 who lost their lives to ALS due to the time it took between Health Canada to approve Edaravone, a drug for ALS and the first province to approve it for coverage.”

On this Remembrance Day, we reflect on his contributions, and reaffirm our commitment to research, care, and support for those living with ALS and their families.

07/11/2025

Thank you to the craft beer community who came together this week at the 2025 Ontario Craft Brewers Conference. ALS Action Canada was proud to be invited to promote the Ales for ALS initiative in Canada, in support of the ALS Super Fund and ALS TDI research toward a cure.

Louis Del Re, ALS patient, volunteer, and ALS Action Canada Board Director, has been instrumental in bringing Ales for ALS to Canada and engaging breweries nationwide.

Ron Keefe, legendary brewery pioneer and Proprietor of , ALS patient and ALS Action Canada advocate, led the initiative along with his wife, Denise and daughter, brewmaster Mary Beth Keefe.

Thank you to Scott Simmons, President and CEO of Ontario Craft Brewers.

Thank you to Federated Insurance for matching all donations made during the two day conference.

Thank you to the Canadian breweries who have committed to raising ales to end ALS: 5 Paddles Brewing Company, Amsterdam Brewing Company, Bickford Brewing, Collective Arts, Farm League Brewing, Granite Brewery, Great Lakes Brewery, Passage Brewery, and Something in The Water Brewing Co.

And to Boshkung Brewing Co., who signed up during the conference to join our movement. Cheers!

Together, we’re building awareness, community, and courage - one pint at a time.

28/10/2025

The journey with ALS impacts entire families, and the need for proactive care and support is critical. Thank you, Paula Trefiak, for sharing your powerful perspective and being a tireless advocate.

“When we have more and more people like my son wanting to get tested, wanting to find out and get pre-symptomatic care, which doesn’t exist equitably across the country right now, I think that’s a definite failure on the system. I would also like to see psychology services included in pre-symptomatic care. These are some of the reasons my son and I are Members of ALS Action Canada and something I try to advocate for.” - Paula Trefiak

Her words highlight the urgent need for systemic change and pre-symptomatic care for those at risk of ALS. We stand with Paula and all our Members in advocating for a better future.

21/10/2025

Toronto Maple Leafs Honour Mark Kirton

On October 13, the Toronto Maple Leafs paid tribute to ALS Action Canada’s former Board Director and NHLer Mark Kirton. A heartfelt thank you to Maple Leafs Sports and Entertainment (MLSE) and all alumni for making this tribute possible. A special shoutout to Keith Pelley, President and CEO of MLSE, for generously providing ALS Action Canada with the suite. Thank you to special folks in the NHL who have supported our community to continue driving Mark’s Courage to Fight forward, including Darryl Sittler, Ron MacLean, Jeff Jackson, Brad Treliving, Wendel Clark, Jennifer Sullivan, Alison Rockwell, Tom Fergus, Brad May, Peter Ing, Mike Ferriman, Nethushan Ramanthan, and more.

We shared this video honouring Mark and his leadership of the ALS Super Fund and the Courage to Fight campaign.

Mark received a standing ovation, and his family was a central part of this memorable day, alongside Mark’s journey. Together, we raised awareness for ALS, and it was wonderful to see patients living with ALS and their caregivers in attendance, connecting with one another and supported by a stadium full of fans and ALS allies.

Let’s continue to build on Mark’s legacy and the courage to fight.

Join Mark’s fight by using the link in our bio to donate.

ALS Action Canada