CALGARY — An ice-cold beer is best enjoyed on a hot day, but one local brewery is taking refreshment to the next level this summer with a beverage aimed at raising funds and awareness for a very special Calgarian.
It’s called ‘The Good Citizen’ – the latest development by Citizen Brewery which will see the majority of its proceeds donated to ALS Research.
The new brew is in honour of Calgary Flames assistant general manager Chris Snow, who was diagnosed with the disease in June 2019.
Doctors told the then 37-year-old that he had perhaps just six months to live, maybe up to 18 months if he was lucky.
Fast forward more than two years and Snow is still golfing with his friends, still cycling to work, and most importantly, still able to play hockey with his two young kids, six-year-old Willa and nine-year-old Cohen.
“That’s everything because those days are really active and I can feel like myself and look to others like I’m essentially the same. That capacity to just do things really helps my spirit,” Chris said.
“It’s not the miracle we’re looking for, but it’s a miracle for sure.”
Chris’ wife, Kelsie, has stood by the entire time and together the pair have helped to raise more than $500,000 through the Calgary Flames Foundation and its Snowy Strong campaign, along with several other community initiatives.
Kelsie is also using her skills as a former freelance journalist and documenting the journey through a blog, ‘Kelsie Snow Writes’ and a podcast called ‘Sorry, I’m Sad.’
Her stories keep families updated and provide a message of resiliency to others going through similar experiences around the world.
“It really does make a difference to know you have people pulling for you and caring about you, whether you know who they are or not, which speaks to the sense of community we have here in Calgary as a whole,” Kelsie said.
“It’s just very honest for me and this is what helped me process and figure out what I was feeling and this notion that other people are getting something out of it means a lot to me.”
BEATING THE ODDS
ALS, also known as Lou Gehrig’s Disease, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.
Only about 5,000 people are diagnosed every year, but there’s no cure and few treatments. In fact, fewer than 20,000 people in North America are estimated to be living with ALS.
Chris is one of just 2,000 people living with familial ALS as Chris’ dad, both of his paternal uncles and his 28-year-old cousin have all succumbed to the disease caused by the SOD1 genetic mutation.
“I knew if I got this it was effectively a death sentence and a rapid one and to have no hope and then get that, it’s really an elation,” he said.
“There’s the emotional challenge of what could happen next, which is greater than my physical challenge, but the fact I could do everything I could do before with the exception of eating is incredible.”
In early 2020, Chris was able to enroll in a Phase 3 clinical trial at Sunybrook Health Sciences Centre in Toronto for those with the SOD1 mutation, which only affects two per cent of ALS patients.
It was there that Chris was given access to a drug called Toferson, developed by BioGen – a spinal injection he takes every four weeks which helps slow the effects of ALS.
He might not be able to smile and he has some difficulty speaking, but other symptoms have slowed, allowing for Chris’ infectious energy to shine through for those he cares for the most.
“Every day is so precious and that has driven us to make sure the way we act around the kids and the things we do with them are things they feel really good about and do them as if they were the last time we could,” he said.
“I can’t worry about that though, I can only control how I treat Kelsie, how I treat the kids and taking these days as slow as they continue and that’s exactly what we do.”
‘IT GIVES PEOPLE HOPE AND HUMANITY’
Joel Field, the head brewer at Citizen Brewer, originally partnered with the Snow family to create a new beer after hearing about their story and spotting a familiar logo in one of their photos.
“I read an article on the Snows and strangely enough in the headline photo of them having dinner, I noticed they had a bunch of Citizen Brewery glasses at the table,” Field said.
“It turns out we had some mutual friends and we were just so inspired by their story.”
Field instantly knew that his brewery needed to highlight the hard work of the Snow family and cans of ‘The Good Citizen’ have been flying off shelves ever since.
A total of 167 flats of 24 cans were created and more than half of them were sold just last week with the majority of proceeds all going towards ALS Research.
“I think that this is just something that gives people hope and humanity, especially hope in their fellow neighbours which is sort of where the name of the beer came from,” said Field.
The beer itself is a hybrid between an IPA and New England IPA, described as very flavourful from the hops and with not a lot of bitterness.
Flats of the brew are also being purchased and used for other fundraising efforts and charities as a way to give back even further.