Stories

Amanda Tam shares her perspective on living with ALS, the importance of accelerating research, and what keeps her moving forward. Through honesty, advocacy, and awareness, she is helping build understanding and community while ensuring the experiences of people living with ALS remain at the centre of conversations about care, research, and support.

During National Volunteer Week, we recognize volunteers who are helping drive progress toward ending ALS. Chris May brings decades of advocacy experience to ALS Action Canada’s Advocacy Committee – now with a deeply personal mission. Living with ALS, Chris is using his knowledge of government to help drive awareness, influence change, and push for progress toward ending ALS.

Hear from Louis Del Re, a person living with ALS, who has channelled his diagnosis into fundraising for the cause, and Leigh Naturkach, Executive Director of ALS Action Canada and Cause Leader of the ALS Super Fund, as they share what courage looks like up close. Watch the webinar

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

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

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

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

“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.

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

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…