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
September 2026
IN THIS ISSUE:
Kathy Classic Raises over $28,000 for the ALS Super Fund
Free Financial Planning Support for People Living With ALS
Adding the ALS Voice to a Call for Rare Disease Action in Ontario
Every Day Counts: Help Advance Access to Qalsody
August 2026
IN THIS ISSUE:
Chris May Joins ALS Action Canada’s Board of Directors
ACCESS ALS: Building Canada’s Clinical Trial Network
Connected Care Matters for People Living with ALS
Teammates Rally for ALS in Manitoba
Greystone Golf Club Continues Its Support for ALS
Brewed in the Family: Nearly 200 Years of Stories
Why Terry is Speaking Up About ALS
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
