We are extremely saddened to have lost Mark Kirton, ALS Action Canada Board Director, ALS warrior and former NHL’er. Mark found a community and outlet to focus his fundraising and advocacy efforts in his work and leadership of ALS Action Canada, the only ALS patient-led organization in Canada.
Among his contributions, Mark launched the ALS Super Fund and Advisory Council, engaging top ALS neurologists, scientists, clinicians and patients to advance the best work on ALS today. Through his transformational leadership of the Courage to Fight campaign, Mark first galvanized a 7 NHL Canadian team campaign, which later broadened to the entire NHL community of 32 teams and other champions. This campaign was a truly unique effort to raise awareness about, and funds for, ALS in North America, raising over $1.6M in the last two years alone. The ALS Super Fund brought to life Mark’s dream of getting everyone to play on the same team to end ALS. The ALS Super Fund remains unique because it can support any charity working toward a cure to this terrible disease.
In his last few days, Mark was working hard on the Courage to Fight 2 Campaign, with the support of Ron Maclean and Darryl Sittler, and had just attended the Graystone Golf Tournament in support of ALS.
Mark contributed over the years to many initiatives, including ALSAC’s Day on the Hill in the fall of 2024, and implementing and cohosting a biweekly support group to empower ALS patients and caregivers to connect and help each other through the different ALS stages.
He was awarded the Carl Brewer award from the Toronto Maple Leafs alumni for his outstanding community work, and the King Charles III’s Coronation Medal award.
Mark’s authenticity, collaboration, bold thinking, unwavering commitment, grace, wisdom, and incredible sense of humour made an indelible impact on the ALS community, our organization, and all who crossed his path. As a hockey player, Mark was a natural leader, loved by his teammates. As an ALS champion, Mark galvanized a movement, bringing the ALS community together around a common cause. His leadership shone in all spaces he entered. Mark’s courage to fight inspired so many others to tap into their courage in their own way, and will live on in all of us.
Mark remained true to his words and values, right to the end:
“Time is the most valuable commodity in the world. And very often taken for granted. And there sure isn’t a lot of time for people with ALS. Inevitably it’s a death sentence. In the end, I have no idea how it will play out for me. My voice has weakened and breathing has declined to the point that I wear a BiPAP 24 hours. However, I am now into year 8 since diagnosis, of a 2-5 average lifespan. In other words, I am playing with house money. But I can try and capture every moment, every day with the people I love. Teach them everything I have learned over the years and make them feel proud that they battled right alongside me to the end.“
