Paula Trefiak recorded involuntary muscle twitching in her face in 2017. See how she improved
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Regina ALS patient Paula Trefiak took part in clinical trials for a drug that has slowed the progression of the disease and reversed most of her symptoms.
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National Post
2 days ago
- National Post
Oilers notebook: Keith Acton fondly recalls 'resilient' Mark Kirton who died after fight with ALS
Former Edmonton Oilers Stanley Cup winner and associate coach Keith Acton fondly remembers his friend and ex-NHL forward Mark Kirton, who fought the bravest of fights with ALS before dying Sunday in Ontario. Article content 'It's so sad…he really dedicated himself in every way to generate resources to fight this for others, you know, coming down the pipe, making people aware (ALS),' said Acton, who played three years of OHL junior hockey in Peterborough with Kirton, who was diagnosed with the awful disease in 2018 and died at 67. Article content 'He gave a message on video for (former NHL goalie and TV broadcaster) Greg Millen's funeral (April). Mark was always thinking of others. He was a good player, a good person and so resilient,' said Acton, who was successfully treated for testicular cancer when a Maple Leafs' assistant coach to Pat Quinn. Article content Toronto Maple Leafs' Hall of Famer Borje Salming, Calgary Flames ' assistant GM Chris Snow and Ottawa Senators assistant coach Bob Jones have also succumbed in the last three years to ALS or Lou Gehrig's Disease, the nerve system disease which affects nerve cells in the brain and spinal cord, causing a loss of muscle control and eventually a loss of mobility and the ability to eat and speak, paralysis and respiratory failure. Article content No disrespect to Kirton's 266 NHL game career after being a second-round Toronto draft pick in 1978—it's not easy making the best league in the world—but he got more interest for his ALS battle and raising money to draw awareness to the insidious disease. He founded ALS Action Canada with PALS (Patients with ALS), a patient-led alternative to find a cure in 2020. Article content Article content Five years is usually the high bar with people with ALS and Kirton lived seven. In December, 2023, after Kirton spearheaded the effort, the seven Canadian teams got together to help raise funds and reached $1 million. Article content Article content 'He was a dedicated hockey player who loved the game but his dedication to this (ALS) was a whole other level,' said Acton, who won a Cup ring here in 1988, and later was on Dallas Eakins' staff, along with owning a Boston Pizza franchise for about 20 years in Stouffville, Ont. and currently on city council there. Article content Kirton and Acton played three years together in Peterborough, the first season for Roger Neilson, who later would coach the Leafs and Canucks. Acton would go on to play 1,023 NHL games, and Kirton had stops with Toronto, Detroit and Vancouver, becoming an NHL role player, lessons learned from Neilson. Article content 'Mark was strong for his size and he did the basics…he was a Roger (Neilson) kind of player, disciplined and dedicated the defensive side of the game. Good on face-offs, a good penalty-killer and he could score. He wasn't flash and dash but he was a very serviceable player. I'm sure Roger was instrumental in Mark being drafted to the Leafs because, and deservedly so, Roger held Mark in high regard,' said Acton.
Edmonton Journal
2 days ago
- Edmonton Journal
The remarkable ex-Leaf Mark Kirton succumbs to ALS
Article content Everyone should have a Mark Kirton in their lives Article content Someone who makes today better than yesterday. Someone who makes tomorrow better than today. Article content There aren't many of them in our world — those built-in genuine optimists who you visit and walk away feeling better about the world, about your life, about the sun that is shining because you spent some time with him. Sometimes it may have been just a visit, or a phone call or a text message or just an email. Article content Article content But always with a smile, maybe a joke, maybe a little laughter, something to feel right about when really there wasn't all that much to smile or laugh about. The former hockey player, Mark Kirton lost his battle with the dreadful disease ALS, also known as Lou Gehrig's Disease, on the weekend and I don't know if I've ever known anyone quite like him before, or anyone I admired more. Article content Article content We first met in 2021 when he went public with his personal fight and from there a relationship was born. ALS is a monster that takes away your life, bite by bite, piece by piece. It's different for everyone suffering. Some lose their hands first. Some lose their feet. Some are confined to wheelchairs. Some can speak, some can't. Some can see, some can't, It's one part, then another, no timetable for how it goes or how it tears your life apart. Article content Kirton was still selling real estate in Oakville when we first met, working from home, working from a wheelchair, still talking fast, smiling, pushing the product, forever ready to make the next deal. Article content Article content But as he was still working, he began to turn his work to his own disease. What he could go for ALS? How he could find a way to raise more money? Why is it there were drugs in America that weren't available in Canada? Why is it there wasn't enough known about the disease and not enough research being done. Article content He had more questions than answers, and no where to turn for money. Article content So he started ALS Action Canada and began fundraisers for the disease. He wasn't a big name — he wasn't his former teammate, Borje Salming — but he was so engaging. Article content He got the Canadian NHL teams involved in fundraising. He started the ALS Super Fund, which all NHL clubs began events to contribute to. From ALS Action Canada to the ALS Super Fund, he started PALS — an organization for people suffering from ALS. Article content He wanted to connect people going through the same difficulties. He wanted more communication. Just last week, he had planned to meet with television's Ron Maclean and former Maple Leaf captain, Darryl Sittler, to get to work on his latest project.
Vancouver Sun
3 days ago
- Vancouver Sun
Mark Kirton, ex-Maple Leaf and fighter for ALS treatment, dies at 67
Mark Kirton, the former Maple Leaf and NHLer who waged a long struggle against ALS and became spokesman for expanded treatment for patients and their families, has died. Former Leafs posted the news Sunday evening. Kirton, 67, was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's Disease, in 2018 and was determined to lead as normal a life as possible, including time as a real estate agent. But he also vowed to help educate the public on a condition affecting more than 3,000 Canadians. 'After such a long, hard-fought brave and gruelling battle, may he rest in peace,' one-time Leafs captain Darryl Sittler said in an e-mail to Postmedia. 'Mark is an inspiration to us all. God bless him.' Start your day with a roundup of B.C.-focused news and opinion. By signing up you consent to receive the above newsletter from Postmedia Network Inc. A welcome email is on its way. If you don't see it, please check your junk folder. The next issue of Sunrise will soon be in your inbox. Please try again Interested in more newsletters? Browse here. Kirton's lobbying, with the help of many friends in the NHL community, included a case for better access to medication to ease suffering and financial help for patients and caregivers. 'It breaks my heart that anyone and their family should have to go through this,' Kirton told Postmedia after the death of Leafs great and former teammate Borje Salming from ALS in 2022. 'Such hopelessness and so hard to stay positive, even though there are some slow-progression meds in the field. 'Make noise every time you hear the words ALS. Be loud and try to make a difference. Sooner or later, the more people know about this, then help will come all at once, like a cavalry, and our government will have to take notice. 'We still need a better system to qualify for trials and promising drugs, faster pathways for drug approvals and more government-covered hours for home care. 'More than anything, after 100 years, we need to focus on finding a cure.' In aid of Kirton's funding cause, every NHL team donated a fan experience package spread through the 2024-25 and '25-26 seasons. 'He fought with everything he had for many years,' posted ex-Leaf Chris Kotsopoulos, who played with and against Kirton in the Wexford minor hockey organization in Toronto and later in the NHL. 'A good man has left us.' Kirton, born in Regina, was a 5-foot-10 centre, a 1978 draft pick of the Leafs. He played 266 games for Toronto, Detroit and Vancouver, ending with the Leafs' farm team in Newmarket. 'No one fought this disease harder than Kirts,' posted former Leaf Greg Hotham. 'He will be remembered for his incredible zest for life, his love for his family and his incredible determination to find a cure for ALS.' Lhornby@ X: @sunhornby
