The outlook for those diagnosed with ALS can appear bleak, but a front-line forward such as Mark Kirton keeps referring to “the never-ending battle.”
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It was Kirton who stepped up to help Leafs great and former teammate Borje Salming after he was diagnosed with amyotrophic lateral sclerosis in late July, an opportunity to help educate the public on a disease affecting 3,000 Canadians alone and almost 1,000 in Salming’s native Sweden.
“When you have someone getting it who is in hockey, as famous as Borje, it brings more attention,” said Kirton, who was given his own stunning ALS news in 2018. “(Ex-Leaf) Mike Gartner and I were speaking about Borje today and Mike told me he wasn’t sure exactly what ALS was until I had it.”
Two years ago, wishing to share stories and personally frustrated at how long it took levels of government to approve drugs meant to slow the progression, Kirton called other PALS (People With ALS) to form ALS Action Canada.
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“It’s primarily a patient-led group,” the wheelchair-bound Kirton said, “because we felt we were all suffering in our journey and needed to be heard. And that it would be the best way to be acknowledged by the powers that be to move things towards a cure. The group is getting stronger and stronger.”
The projected life span for about 80% of those with ALS is two-to-five years, although different factors can lengthen the survival rate. Kirton’s concern is that the red tape in getting the drugs into the intended patients before they die is proving too difficult. Up to three drugs that slow progression are in circulation or about to be available.
“Ours and certain other groups such as ALS Canada are pushing hard to speed it up (at the federal level). Three main goals of ALS Action Canada are faster government pathways and affordability for drugs, ALS advocacy and more research funding through government means. We’re talking to Health Canada a lot, to drug companies, provincial ALS alliances, MPPs, MPs and whoever else we think can help our cause. We want to be a mover and shaker group, really make some noise.”
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Kirton is able to operate a real-estate business through his illness with wife Lisa and remains tech-savy. With the help of his family and personal support workers, he can also find time to push for more funds and awareness.
“These are by no means anything close to a cure, but at least it gives us hope of some more life while we pray for a cure,” Kirton wrote in a recent fundraising letter.
“Team Kirts” raised more than $100,000 for Sunnybrook Research Centre in Toronto and ALS Canada, with a portion to another ALS clinical trial scheduled to move into Phase 2 this fall.
Kirton has also long been interested in the possible link between ALS and pro sports injuries.
In a 2021 interview with Postmedia’s Steve Simmons on the 80th anniversary of Lou Gehrig’s death from the disease that would bear the New York Yankees legend’s name, Kirton said he needed just two hours to find 70 former athletes, mostly footballers, similarly afflicted. He noted his own concussions in 746 NHL and AHL games numbered about three or four and was not surprised when Salming told him he’d had as many as eight.
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“There’s no doubt that there’s a risk factor (playing contact sports),” Kirton said last year. “But also, so many non-athletes have got this and have never had a concussion in their lives. I truly believe in my heart there is evidence that warrants further studies, studying elite athletes with ALS. But there’s so much still to learn about this.
“The disease is 80-years-old and you look at how quickly they’ve come up with a vaccine for COVID-19, you wonder if enough research has been done about ALS since Gehrig died.”
Part of Wednesday’s announcement from Salming included a statement from his doctor, Caroline Ingre, from the Karolinska ALS Research Center in Stockholm.
“In recent decades, we have learned much more about the cause of ALS, and it has been shown it’s not a single disease. Instead, ALS is probably a collection of subgroups that all lead to the same symptom picture.”
Karolinska is the same medical facility that Swedish-born Leaf captain Mats Sundin started a cooperative foundation with the University of Toronto to study the early years of child development, a passion of Sundin’s after he became a father and in tribute to his mother, a nurse.