Chris Snow has lost multiple relatives from familial ALS. Most recently, the assistant general manager of the Calgary Flames lost his dad to the disease a year and a half ago.
Chris and his wife, Kelsie Snow, always knew there was a possibility that he could be diagnosed next.
“I think at some point, you think enough bad things have happened to you and maybe you’ll miss this one,” Kelsie said Saturday during After Hours on Hockey Night in Canada.
Chris Snow, 38, never thought a great deal about the progressive neurodegenerative disease until his cousin passed away from it at age 28 five years ago.
“When it struck our family that young, previously having struck my uncles at ages 48 and 52, that was when it became more real to me,” Chris said. “That’s when it became a concern.”
Last June, Chris found out he too is afflicted by familial ALS.
He was working out in a hotel gym in Denver during the playoffs when he realized he didn’t have the same grip strength in his fingers and outer part of his right hand. He suspected it was ALS right away.
ALS, also known as Lou Gehrig’s disease, causes the muscles in a person’s body to break down. It gradually paralyzes those who are diagnosed because their brain becomes unable to communicate to their muscles.
Only about 10 per cent of all ALS cases are classified as familial, meaning that there are at least two people in their family who are blood relatives with the disease. Out of all ALS cases, only two per cent have the same specific gene mutation that Chris has.
Life expectancy for his mutation is six to 18 months, Kelsie Snow said.
“It was obviously the most devastating thing that has happened in our lives,” she said.
The first week after his diagnosis was a whirlwind for the Snow family. After being at the lowest of lows, the Snows travelled to Miami, Fla., to meet one of the leading experts in ALS in the United States.
The doctor told Chris to do two things.
“One, do what brings you joy and two, join this clinical trial,” he said.
The doctor was referring to an experimental gene therapy trial that was beginning another round of testing in late July 2019. It’s the first-ever ALS gene therapy drug to have made it to a third phase of a clinical trial, Kelsie said, which means it has shown safety and effectiveness in the first two.
“They gave us hope back and we didn’t think that we would get that,” she said.
Chris received the trial drug by getting an injection into his spine once a month at Sunnybrook Hospital in Toronto. The injection then targets the specific genetic mutation in Chris’ DNA that caused the disease.
“The best way to say it is that it tries to silence some of that gene that is mutated in hopes that if you silence enough of it, it will either severely slow down or stop progression,” Kelsie said.
The trial finished last Thursday, and while the Snows do not know if Chris was receiving the actual drug or a placebo, he has not seemed to experience any progression of the disease. His right hand and forearm are the only parts of his body that show any symptoms.
“Their feedback to me was that by September, I wouldn’t be able to lift my right arm over my shoulder and I can do anything movement-wise,” Chris said. “I can shoot a puck, I can pass a puck. I can’t support a lot of weight, but functioning my arm is fine.”
With the trial over, Chris will continue to have treatments each month. This time, the drug is in what is called an “open-label stage,” meaning he knows for sure that he is getting the real drug at every treatment.
Chris hopes that the drug will be approved for use in Canada and the U.S. one day.
Since his diagnosis, both Chris and Kelsie are hoping to raise more awareness about ALS.
“We felt like as soon as I was diagnosed, whether it was a month or six months later, we’re going to take this and we’re going to make a difference,” Chris said.
“I don’t think anyone in 2020 should walk into the hospital and doctor’s office and be told ‘we can’t do anything for you,’ especially when you’re early on in the stage of something.”
Kelsie has been chronicling Chris’ journey on her blog. Every morning when she ties Chris’ shoes, she asks if he feels the same as he did yesterday.
“He’ll say ‘yes, I feel the same.’ And that’s when I say, ‘alright, we are living the dream.’
“That’s the dream, just be the same every day.”