Storytelling is a powerful way to connect with others with shared experiences, especially in the ALS community. Stories can shine a light on the impacts of ALS, raise awareness about the disease, and help inspire and motivate others to drive change.
After years of searching for answers, Terry Loustel was diagnosed with ALS in 2022. In his own words, Terry shares his journey—from receiving his diagnosis to navigating life with ALS—and why he has chosen to use his voice to advocate for the ALS community.
At 57, Shawn lives in a small town in British Columbia’s northern Okanagan. He enjoys the beauty of the region and remains focused on living life to the fullest, despite an ALS diagnosis that arrived after a long and uncertain journey.
Shawn first noticed something was wrong in May 2022 when he developed a weak pinch grip in his left hand. What followed was more than a year of appointments, referrals, tests, and alternative explanations.
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.
