Retired hockey player Mark Kirton turns his ALS diagnosis into an awareness and fundraising campaign
Borje Salming’s recent diagnosis of ALS or Lou Gehrig’s disease hit far too close to home for Mark Kirton.
Kirton, a former Peterborough Petes and former Toronto Maple Leafs teammate of Salming, was diagnosed with the debilitating and ultimately fatal disease four years ago after first experiencing symptoms seven years ago.
Kirton became an advocate for ALS patients and tried to counsel Salming as he processed his diagnosis.
“Darryl Sittler approached me about three weeks ago and broke the news and asked if I could contact the family, so I did,” Kirton said. “Darryl, me and the Salming family zoomed in every four or five days. I gave him a ton of advice on medication and what to expect and answered all their questions.
“It throws a loop on you and your family. Your family is also diagnosed because they all have to deal with it. No doubt I tried to cheer him up and tell him that his game plan is to try to survive as long as you can until they find a stronger drug treatment or a cure.”
Both have sporadic ALS, which means it’s not genetic. With the number of athletes suffering from neurological disorders, Kirton wonders if it is possible that a head injury during their sports career is a possible cause.
“There are studies going on about that. I was asked to do a webinar in September with a few NFL guys to talk about that kind of thinking. I know Borje told me he had had eight concussions and I had three or four strong,” he said.
Kirton is now in a wheelchair but still able to run his Oakville-based real estate business with his wife Lisa, use the computer, host Zoom calls, feed himself with proper utensils, and breathe and eat normally. for the moment. He has the daily assistance of a personal support worker who supplements the support of his family.
Last year, Kirton’s fundraising team raised more than $100,000 for Sunnybrook research and the ALS Society of Canada, part of which went to a world’s first ALS clinical trial at Sunnybrook. , which is set to move into phase 2 this fall.
This year, he shifted his focus by joining a group called ALS Action Canada (ALSAC), a patient-led organization that advocates directly with federal and provincial governments for faster access and approvals to promising drug therapies; and calling for increased and immediate federal investment in ALS research and clinical trials in Canada. Currently, the federal government is investing almost nothing in ALS research (just over $2 million last year) and clinical trials are few, limited and not in all provinces, Kirton said.
He has two projects he would like to do. He would like to help found a long-term care residence for ALS patients in Ontario when the level of care required becomes too much for families to care for on their own. Most long-term care facilities aren’t equipped or don’t have the expertise to treat ALS patients, he said.
He also likes to publish a handbook for newly diagnosed ALS patients outlining all the services and therapies available, what to expect and how to deal with the changes in your daily life.
“There are so many things I would love to do and it’s only if I have enough time to do them,” he said.
“At the end of the day, I have no idea of the timelines and how it will play out for me.
But I can control and try to capture every moment, every day, with the people I love and make them proud to have fought by my side until the end.”
To donate for ALSAC’s $200,000 Goal Tour alsactioncanada.org/donate.