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ALS Awareness

This month my family is participating in a Virtual Walk to End ALS. Someone close to us has been affected by this disease and believe that the more knowledge we all have about ALS, the better the opportunity to find a cure, or a way to prevent this terrible disease from taking away a person’s life.


Here is the link to my fundraiser if you would like to contribute. At the bottom are links to global sites to learn more or find a place to donate in your own country.



The information and the story of former NHL player Mark Kirton has all be taken from ALS Canada’s web page or emailed to me for sharing.


Mark Kirton faces ALS with the mindset of a pro athlete. He played in the National Hockey League from 1978 to 1988 for Toronto, Detroit, and Vancouver and then followed that up with a successful career in real estate in Oakville, which he still runs from home. In the spring of 2015, Mark started feeling muscles in his right bicep twitch, and he was getting weaker. Then other things started happening – he would fall randomly or drop a dumbbell that wasn’t particularly heavy. “The disease moved around like a clock – going from right arm to left arm, to left leg to right leg, and it caused a lot of damage along the way,” he says.


For Mark, who received his ALS diagnosis in 2018, the progression of the disease has been humbling and cruel. “It’s almost like when you’re trying to make it to the National Hockey League and you’re so disciplined and so driven – nothing is going to stop you. That’s the attitude I had to take – that nothing would stop me from keeping with my same personality. I won’t allow depression to seep in.”


After he got the devastating news, Mark listed as many current and former pro-athletes he could think of who have or had ALS and came up with 80 names in an hour. He’s reached out to some to talk about their shared experience. “What really is amazing about all of these ALS inflicted people is that they are so positive, it’s like they have hearts of lions,” he says. “I try and talk to some that reach out to me to try and boost them up and give them some positivity, but there’s a lot more I’d like to get a hold of in this journey.”



ALS has had a profound effect on Mark’s family, who are also his caregivers. He will never forget the look on his 15-year-old daughter and his wife’s faces when he took a fall in February trying to shut off the TV. “It’s a helpless look,” Mark says. “Here’s a former NHL player who used to have the strongest legs in the world. … I try not to, but you can’t help but letting thoughts jump into your head like, ‘I want to be around when my daughter gets married.’ You start thinking about the future like that, but you’ve got to catch yourself and think about today. ALS doesn’t just affect me, it affects my wife and kids too, so I have to make sure that I’m very upbeat so everyone else is okay around me.”


“From a positive standpoint, never ever have we been in a position we’re in right now to push forward with awareness,” Mark says. “I think Lou Gehrig Day is massive. MLB came out with a mandate to raise awareness and funds for research, provide some information about the history of Lou Gehrig and ALS and celebrate the groups and individuals who are pursuing cures. Those are some pretty strong mandates.”


In addition to Lou Gehrig, there have been a number of prominent professional athletes who have developed ALS. Some of these athletes include: Jim “Catfish” Hunter (MLB 1965-79), Tony Proudfoot (CFL 1971-82), Chris McCauley (OHL 1979-83), O.J. Brigance (CFL and NFL 1991-2002), Steve Gleason (NFL 2000-06), Pete Frates (Baseball: Boston College Eagles, 2004-07), and Steve McMichael (NHL: Chicago Bears: 1981-1993). While the causes of ALS are unknown, researchers have been studying whether high-intensity sports might be a potential risk factor for ALS.


“It’s unprecedented times right now,” Mark says of the opportunity to raise awareness with Lou Gehrig Day. “I think NFL football should be next – because they have numerous guys that have or had this horrific disease. They should be next in line to also have a Lou Gehrig Day – why not? – celebrate it one Sunday during their season. I think all of the sports leagues that have former athletes that have ALS should be involved in this, until we have a cure. … ALS has been kind of a forgotten illness. I think with MLB’s awareness activities on June 2, and the community’s participation in Walk to End ALS events in Ontario on June 20th, let’s hope that some of the other leagues take notice and do something.”


https://www.als.org/

https://www.encals.eu/centres/als-center-netherlands/


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