‘I have been given a gift and extra time’: Flames assistant GM Chris Snow battles with ALS
Published in The Globe and Mail March 23, 2021, written by Marty Klinkenberg
TODD KOROL/THE GLOBE AND MAIL
Early in 2019, Chris Snow began to feel numbness in the fourth and fifth fingers on his right hand. Then muscles in his right forearm started to waste away.
Snow, an assistant general manager with the Calgary Flames, thought he had pinched a nerve in his elbow while working out at the gym. That May, he had an electromyogram, a procedure in which needles are inserted into neural pathways to see how muscles react. He expected to be told he needed surgery.
The results were inconclusive, so the next month, he repeated the test.
It was amyotrophic lateral sclerosis, a fatal disease of the nervous system that affects nerve cells in the brain and spinal cord, causing loss of muscle control.
The diagnosis struck him and his wife, Kelsie, like a sledgehammer. He was told he had perhaps six months to live, at the outside, maybe 18.
“It is absolutely the worst news you can receive,” Chris says. “It is a complete no-hope scenario.”
Kelsie was in a small room with no wall hangings at a Calgary medical clinic when she heard the news. She felt like she was going to vomit. At the time, he was 37, and she is two years younger. They have two young children.
“The conversations we had after that were all about how to live without him, how to talk to the kids about him when he was gone,” Kelsie says as she chokes back tears. “That week was horrible. I don’t know how we survived.”
After putting the kids to bed one night, she came down the stairs and collapsed on the floor.
“I had never felt hopeless before,” Kelsie says. “It was pure desperation.”
However, the prognosis for Snow was not accurate. It is 21 months later, and he continues to work fulltime for the Flames. He has weakness in his right arm, hand and face, and eats with the help of a feeding tube. But when it comes to his job, he says, “There is no change from the life I led before.”
Several days a week, Kelsie ties his skates and Chris plays shinny at an outdoor rink in their neighbourhood.
“If you were to watch, when I am out there you wouldn’t know I have ALS,” he says.
The game he and his buddies play requires no netminder. A goal is chalked up each time someone bangs a puck off a post or crossbar. Chris holds his stick with the help of a special gripping device. With it, he jokes, he shoots better than ever.
“Every time I hit a post or crossbar, I yell,” he says. “It is a reminder that I am healthier than I am not.”
Within a few weeks of being diagnosed, Snow began to receive a drug called Tofersen as part of a Phase 3 clinical trial. The drug specifically targets SOD-1, his genetic mutation of ALS. It is the most aggressive form of the illness, which is often called Lou Gehrig’s disease, after the baseball player who was diagnosed with it 81 years ago.
Although one’s brain remains clear, ALS affects control of the muscles needed to move, speak, eat and breathe. Victims become trapped within their own bodies.
Chris has been given 25 doses of Tofersen so far, first through a trial and then through a study financed by Biogen, the biotechnology company that manufactures it. He will receive Tofersen for four years at no cost because it has orphan status, which means there is no other drug that is comparable. It is administered through a spinal tap in his lower back. The procedure is extremely uncomfortable.
“I can take a needle,” he says. “I am being given a life-extending medication.”
Tofersen arrested the progression of his illness for nearly nine months. Then, in April of last year, his smile began to droop. By December, chewing became difficult and he started to choke when he ate solid food.
Those were gut-wrenching setbacks.
“Any month where there was no change felt more and more like the drug may be the answer,” Kelsie says. “When that happened, it was like he was diagnosed all over again. The drug definitely was working, but not all the way.
“We have had to grieve and mourn at every step over what we have lost.”
He and Kelsie remain hopeful. The life expectancy for someone with ALS SOD-1 is seven months once symptoms begin to appear. His first appeared in the spring of 2019 and then he had none for nearly a year.
“Any doctor I have seen says there is no doubt I would not be here without the trial,” Chris says.
“I have been given a gift and extra time – either a little or perhaps more than that.”
“ALS has grabbed hold of Chris’ body and stolen parts of it away, and it has done the same to my spirit.” – A post by Kelsie Snow on her blog Kelsie Snow Writes from Jan. 1, 2021.
When they met, Chris Snow was a journalist who covered the Red Sox for The Boston Globe, and Kelsie Smith was an intern in the newspaper’s sports department. He was 23; she was 21.
One night, a fellow intern invited her to meet him and Chris for a few beers. She comes from a small town in South Dakota and knew few people in Boston, so she joined them that evening at the White Horse Tavern, a pub in the neighbourhood where he grew up.
Chris and the other intern had gone to school together at Syracuse University. They relived old times – and completely ignored Kelsie.
“Within five minutes, I might as well not have been there,” she says.
At one point, their conversation turned to women.
“He kept putting his foot in his mouth,” Kelsie says of her future husband. “He was not too smooth.”
There was something she liked, though.
“He had a beautiful smile and blue eyes,” she says.
When she returned from Boston for her final year studying journalism at the University of Kansas, they began a long-distance relationship. She was invited back for another internship the next year, and she and Chris began to date.
“I thought, ‘Oh, great! We’re going to spend the whole summer together,’” she says.
Shortly after she arrived back in Massachusetts, he accepted a job offer to become the director of hockey operations for the Minnesota Wild. He is a data and statistics expert, and had once briefly written about the NHL’s Wild for the Minneapolis Star Tribune.
She visited him in Minneapolis a month later. He had purchased a condo and wanted her to see it.
“We walked in and there was a ring on the kitchen counter,” Kelsie says. “I am sure he said lovely things, but I don’t remember most of them.”
The one thing she recalls clearly is that he said, “This is our home and I can’t promise we will be here forever, but I can promise we’ll be together forever.”
Kelsie was speechless but nodded yes. Then he said, “This is where I need you to verbalize something.”
They were engaged, and when her internship concluded, she moved to Minneapolis to be with him. She had no job but rather quickly landed a position covering the Minnesota Twins for the St. Paul Pioneer Press.
They were married on a bitter cold day in December of 2007.
As they had become serious, Chris told Kelsie about his family history with ALS. His father died from the same genetic mutation of ALS that he has at 68 years old. Two of his uncles were claimed by it at 52 and 48, a cousin at 28.
“I was young and I loved him already, and it seemed so far away,” she says. “I didn’t understand the odds.”
In 2011, he was hired as director of hockey analysis for the Flames, and the Snows moved to the foothills of the Rocky Mountains. Their son Cohen was born the following year. Their daughter, Willa, followed three years after that. He was eventually promoted to assistant GM.
Brad Treliving, the general manager in Calgary, knew Chris’s family history, too.
“We talked about it a lot,” Treliving says. “Prior to the diagnosis, symptoms were creeping in, but we hoped it was something else. “When I heard it was ALS, I felt physically ill. It took my breath away.”
Treliving told Chris not to worry about his work responsibilities. He told him to go home and take care of himself and his young family.
“He is like a little brother to me,” Treliving says. “I was trying to protect him.”
Chris fought him.
“After having lunch a few times, I told him ‘This is not working for me,’” Chris recalls. “I said, ‘You have to ask me to do my job. If there are issues and I can’t do it, trust me that that I will tell you.’
“In the early stages, I did not want to be alone with my thoughts.”
“When you go from no hope to real, true hope you feel high. You feel like you’ll never stop appreciating every single breath you take. You feel like life is brand new. And you feel desperate – utterly desperate – to hold onto that hope.” – From Kelsie Snow’s blog on Dec. 23, 2019.
Chris Snow at his neighbourhood rink in Calgary with his son Cohen and daughter Willa.
n late June of 2019, Chris and Kelsie Snow travelled to Florida to meet Dr. Michael Benatar, an ALS researcher and the chief of the neuromuscular division at the University of Miami’s Miller School of Medicine.
Dr. Benatar knows the Snow family’s history because Chris’s late father participated in a research study there. Dr. Benatar administered another electromyogram and put Chris through a series of motor-skill tests and gave him a mental-acuity exam.
“I think you are in the early stages of ALS,” the doctor told him.
Within hours, Dr. Benatar found a spot available for him in a Phase 3 clinical trial in Toronto at the Sunnybrook Health Sciences Centre. Before the day was through, Chris was accepted in it.
“It was obvious Dr. Benatar and his associates were hopeful,” Kelsie says. “These are doctors who have had every patient die of ALS. They are not in the business of peddling false hope. To see they felt positive meant everything in the world to us.”
On their first day at Sunnybrook, Dr. Lorne Zinman, the director of its ALS and neuromuscular laboratory, told them, “We are here to make history.”
“When you have no expectations and you get a glimmer of hope, it is an incredible thing,” Chris says. “I think I am one of the most fortunate people ever diagnosed with ALS because I have a chance.”
He received his first dose of Tofersen in the summer of 2019 and the most recent on March 5. He gets one each month. At the beginning, he had to travel to Toronto to receive them. Once COVID-19 appeared, arrangements were made for them to be administered to him in Calgary.
Chris and Kelsie remain confident because Biogen is working on two improved versions of the drug.
“They will find more efficient doses if I can stick around for another three to five years,” he says. “Trials are coming fast and furious.”
The couple took to Twitter to talk about his illness shortly after he was diagnosed. In December of 2019, she began to document their life with ALS on her blog, Kelsie Snow Writes. Recently, she started a podcast called Sorry, I’m Sad, in which she talks about their grief, loss and the importance of hope.
When others would prefer to face mortality privately, they chose to go public.
“This disease runs in my family now,” Kelsie says. “It is part of my life forever. I wanted people to know Chris. He is an amazing, resilient person. When other people turn to flight from fright, Chris rises up.
“We have a platform and can lend faces to it. There are two ways to approach this: Go internal or say, ‘I won’t go quietly.’ It feels right for me.”
Chris continues to work every day. He has learned to throw with his left hand, so he can pitch batting practice to Cohen, who is now nine. He taught himself to write left-handed also. Occasionally, he needs to sign a contract with a Flames player. At Christmas, he wrote a card to Kelsie.
She cried, knowing how hard it was for him.