OUR
NEWS
MEDIA
Explore our media coverage, interviews, and updates highlighting ALS, the urgency of advancing research, and the growing movement to drive progress.
See Our Media Appearances
- CP24 Segment: ALS Action Canada is fighting by raising patient voices and fueling research
- Living with ALS: a former paramedic’s story
- Opinion: Trump wants higher drug prices in Canada. That might not be bad
- Friends Carry on Funding for Mark Kirton’s courageous battle against ALS
- Former NHLer Mark Kirton living and leading with ALS
- Patient Shares ALS Journey
- Living with ALS: Navigating care and finding strength
- NHL Teams and ALS Super Fund Join Forces
- Gretzky Leads NHL Icons in support of ALS Super Fund
- Mark Kirton & ALS Super Fund Launch Courage to Fight
- ALS Research Funding for Project Hope
- BC Man’s Relentless Battle with ALS
- The Fight Ends for ALS Advocate Greg Gowe
- Patients Fight to Advance ALS
- ALS Claims BC Trailblazer, but his crusade for a cure lives on
- ALS patient pulls all-night walk in race for better treatments
- Former Burns Lake resident advocates for better ALS treatment in BC
- Former TELUS Lawyer Launches Fundraising initiative for ALS Action Canada
- Hope through ALS Clinical Trials needed in the province
- Patients celebrate BC ALS drug approval, but say more needs to be done
- North Vancouver man challenges BC residents to donate portion of their ICBC rebate to ALS research
Maple Leafs to make donation to ALS charity in honour of Borje Salming
E-NEWSletters
stay informed
July 2026
IN THIS ISSUE:
Thank You to Our Volunteers, Partners and Members
ALS Voices Making Headlines
Member Spotlight: Shawn Penno
Summer Partnership Spotlight: Raise a Glass to A Life Shared
ALS Awareness Month: Courage in Action
Looking back. Looking forward.
IN THIS ISSUE:
Honouring a year of impact and sharing our roadmap for a future where no life is limited by ALS.
We are pleased to share two important milestones for ALS Action Canada:
- Our 2025–2026 Impact Report
- Our 2026–2029 Strategic Plan
Together, they tell the story of what our community has accomplished – and where we’re headed next.
June 2026
IN THIS ISSUE:
June is ALS Awareness Month
In the News: Examining the Impact of U.S. Drug Pricing Pressure on Canada
Your Support Advances Non-Invasive ALS Brain Stimulation Research
CAPTURE ALS 2.0 Seeks New Members for Governance and Advisory Committees
Keep on Buzzin’: A Night of Community, Courage, and Support
On the Links for ALS: Community Support in Action
May 2026
IN THIS ISSUE:
A New Home for Our Movement
Advocacy
– Canada Drug Agency National ALS Advisory Group
– ALS Action Canada Work Referenced in New Health Policy
– Advocacy & Sector Engagement Roundup
– ALS Advance: National Meetings
– CORD Rare Disease Conference
– Canada’s Drug Agency Symposium
– ACCESS ALS Reception
April 2026
IN THIS ISSUE:
Research
– Expanding Independence Through Brain-Computer Interface Innovation
– Webinar Recording: Headline Results from the 2025 ALS/MND Fundamental Rights Survey
Community
– Letters to ALS: Our Journeys to Hope
– Honouring Leadership in the ALS Community
– Courage to Fight: Webinar Replay
– A Legendary Stout — Brewed for ALS
March 2026
IN THIS ISSUE:
Advocacy
– Advancing Access for People Living with Rare Diseases
Research
– Your Voice Matters: Take the National ALS Survey
Community Spotlight
– Spotlight on the Pollock Family Foundation
– Rick Zwiep on originALS: More Than ALS
– Courage to Fight: Live Webinar
Fundraising and Events
– ALS Community Comes Together at Amsterdam St. Patrick’s Day Festival
February 2026
IN THIS ISSUE:
Advocacy
– Patient Perspectives Highlight Importance of Modest ALS Treatment Gain
Research
– ALS/MND Webinars
Community & Fundraising
– Holding on to Hope
– Keep on Buzzin’ 2026: A Community Coming Together for ALS
– Save the Date — 4th Annual Forefest Charity Scramble
January 2026
IN THIS ISSUE:
Advocacy
– ALS Action Canada Membership and Committee
Community & Fundraising
– Courage to Fight ALS Night with the Boston Bruins
Research
– ALS Action Canada Presents at the Canadian ALS Learning Institute
– Upcoming Webinar: ALS Clinical Trials and the FOCUS-CAN Study
Community Spotlight
– The Keefe Family: Brewing Change in the Fight Against ALS
Together, We Made 2025 a Year of Progress
December 2025
IN THIS ISSUE:
December Update: Highlights on the Fight Against ALS
Community & Fundraising Highlights
– NHL Teams Unite on the Courage to Fight ALS Campaign (Edmonton Oilers + Vancouver Canucks)
Research
– ALSAC Challenges Paper on ALS Clinical Trials
Advocacy
– Canada’s Drug Agency (CDA) 2026 Vital Signs Review
Honouring the Snow Family: Courage to Fight Award Recipients
November 2025
IN THIS ISSUE:
– A Month of Momentum for the ALS Fight
– Raising Ales to End ALS at the Ontario Craft Brewers Conference
– Courage to Fight Campaign: The 2025/26 Season Is Underway
– Fund the Fight on Giving Tuesday
– ALS in the Spotlight: Louis Del Re Featured in Nashville
October 2025
IN THIS ISSUE:
Together, We’re Building Momentum for Change
Advocacy Highlights
– Canadian Collaboration to End ALS
Community & Fundraising Highlights
– Greystone Charity Golf Classic
– Forefest Charity Scramble
– Courage to Fight Campaign: The ALS OT Raffle
– Community in Action at Wildeye Brewing
– Maple Leafs Tribute to Mark Kirton
– Member Spotlight: Paula Trefiak and Ben Webb
Raising Ales to Advance ALS
September 2025
IN THIS ISSUE:
A Note from ALS Action Canada
Board Announcement
Research & Grants Highlights
– Project HOPE: Advancing ALS Research and Care
– National ALS Research Summit: Envisioning a Bold Future
Advocacy Highlights
– CORD 2025 Rare Disease Conference: Investing Beyond Drugs
– Speaking Up for ALS Access: CDA Submissions
Community & Fundraising Highlights
– Keep on Buzzin’ 2025
– Kathy Classic Golf Tournament
