The diagnosis in June of 2018 was a devastating one for Chris Snow. He had ALS and was given six to 18 months to live.
The deadly disease had already claimed his father, two of his paternal uncles and his cousin, causing lasting misery and heartache to his family.
The initial news was a horrific shock to the Flames Assistant General Manager and his wife Kelsie. There were tears; there was frustration, anger, and sadness. But, there was also hope, drive and determination.
Describing himself and Kelsie as ‘natural optimists,’ the couple quickly shifted their focus to two things: his struggle to combat ALS, and raising awareness and funds to battle the relatively rare disease.
Snow has a gene mutation that is present in only 2 per cent of ALS cases. This led to him being offered a spot in a clinical trial where he gets medicine injected into his spinal fluid, giving him hope in his personal fight.
“Coming from a high profile position in the NHL, I felt a real responsibility that I had to do something after I was diagnosed,” Snow recalls. “To honour my dad, my two uncles and my cousin I needed to try and ensure that the future for my children, Cohen and Willa, and their children would be different than our family’s past.”
Amyotrophic lateral sclerosis is a ‘progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.’ It is also called Lou Gehrig’s Disease, after the great New York Yankees slugger who was diagnosed with it in 1939.
The most daunting fact about the disease is that there is no cure. At least,
“Every single illness, in a moment in time, was incurable until it was curable,” said Snow. “And our belief is that this is that moment for ALS.”
Not long after his diagnosis, the #snowystrong campaign was born with teams across the NHL rallying around Snow, raising the profile of ALS. He and Kelsie – both journalists by trade – shared their story in the media, including a January 12, 2020 appearance on Hockey Night in Canada After Hours with Scott Oake. The campaign has so far raised more than $200,000. Snow attributes this to their communication skills:
“We’re both born and trained communicators and pretty open and so it came to us very naturally.”
To further spread the word, Kelsie started a blog which chronicles their experience in a raw and honest way, talking openly about their journey with all the highs and lows.
“I think that Kelsie’s ability to story tell and do so in an authentic and eloquent way has made an enormous impact. It’s a real example of the power and the good that social media can do,” said Snow.
Since his diagnosis, staying active has been key. He’s been on skates more in the last two years than ever before hitting the outdoor rinks regularly along with coaching hockey for both his kids. He’s also been active in the summer with his other passion: baseball.
“I can hit a baseball quite far, actually, with one good hand and my right hand as a sort of stabilizer. One of Cohen’s buddies said: ‘Cohen, if your dad had two hands it would be gone every time!’ That made my summer when he said that.”
He’s also spent time biking and after a hiatus, got back into the gym lifting weights. All of this, he explained, is like a barometer when it comes to measuring how he’s faring in his fight.
“Physical activity has been arguably the most important way for me to validate whether I am healthy or not. It just feels really good. It’s almost like giving myself a physical. If I couldn’t do those things, I don’t think I’d be as healthy mentally as I am right now.”
It is this positive attitude that has got Snow this far in his battle – and his belief that there will be a cure for ALS one day.
More about Chris Snow
IMPACT Magazine’s December 2020 Edition
Read about our top Canadian Olympic snowboarder who returned from injury and is chasing that elusive Olympic Gold! Learn how not to lose your momentum running through the cold and snow, work out with Canada’s Top Fitness Trainers, avoid back pain with one of the world’s most renowned experts and try out our delicious Holiday-themed recipes.