Rick Zwiep on originALS – Nothing About Us, Without Us
When Rick Zwiep was diagnosed with ALS in August 2022, he chose connection over silence. At ALS Action Canada and the ALS Super Fund, we are proud to stand alongside Rick, not just as a member of our community, but as a leader. Rick serves on our Board of Directors at ALS Action Canada, leads […]
Sabrina Baker
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 […]
Patient Perspectives Highlight Importance of Modest ALS Treatment Gains
Recent pieces published in the international neurology journal, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, have sparked debate in the ALS community.
In ALS Action Canada’s paper (Darke and Orsulak 2025), “How Effective Does a New Drug for Amyotrophic Lateral Sclerosis Need To Be – The Patient Perspective”, we argued against the proposal of Boddy et al (2025).
The Keefe Family
In 2025, Ron Keefe, owner of Granite Brewery, was diagnosed with ALS. Since then, the Keefe family has turned their shared love of craft brewing into action for the ALS community. Through the Ales for ALS program, Granite Brewery launched Keep on Buzzin’ – a special brew named in honour of Louis Del Re, ALS […]
Jake Thompson
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 […]
How Effective Does a New Drug for Amytrophic Lateral Sclerosis Need to Be? The Patient Perspective.
Submission to Taylor & Francis Online: Peer Reviewed Journals Andrew Darke PhD and Cali Orsulak BSc Pharm A recent paper by Boddy et al (2025)1 advanced the argument that new drugs for ALS should only be considered to be effective if they demonstrate a separation from placebo in total ALSFRS-R score of 3.8 points, over […]
Colleen Hudson
“When diagnosed with ALS, you feel gutted. But finding a community that truly understands the challenges, questions, and complexities of the disease can be a pivotal source of understanding.” Thank you, Colleen Hudson, for sharing your powerful story and for being a Member of ALS Action Canada.
Paula Trefiak
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 […]
Canadian Collaboration to End ALS
This coordinated day of action, spearheaded by ALS Canada, had representation from 41 ridings and included meetings with 23 MPs and Senators. Notably, nine MPs heard directly from the ALS community for the first time, underscoring the importance of this collective. The Canadian Collaboration to End ALS joined together for a day on the Hill, […]
Terry Loustel
Empowering the patient voice is at the heart of everything we do. We’re so grateful for members like Terry Loustel who share their experiences and drive our mission forward. “That’s part of the reason why I’m excited about ALS Action Canada because it’s people with ALS that are driving it… I’ve felt more empowered listening […]