Flames AGM Chris Snow and his heroic battle with ALS. 18 Aug, 1981–30 Sept 2023. RIP

[sureLoss]

Come on Chris you can fight this.

https://www.nhl.com/flames/news/dear...ly/c-312763286

Dear Hockey Family,

I'm here to share news we prayed so hard we'd never have.

Chris has been diagnosed with ALS.

ALS is a horrible disease, and when we went to Miami to see one of the best ALS doctors and researchers out there, we prayed hard. We believe there are miracles in the world and maybe, maybe we would get one.

And we did, just not the one we'd hoped for.

In the same breath as the doctor telling us that Chris was in the early stages of ALS, he also gave us hope. The next step, he said, was to enroll Chris in a clinical trial for the most encouraging ALS gene therapy treatment to come along. The drug targets a specific genetic mutation that has devastated Chris' family. Just over one year ago Chris' dad passed away from ALS. We have also lost both of Chris' paternal uncles and his 28-year-old cousin to this disease.

In the simplest terms, this drug works by silencing the effects of the mutated gene, and in Miami we could see how hopeful the doctor felt. So hopeful that when I asked if he believes this drug could stop progression entirely, he said, "We don't know, but it's not outside the realm of possibility."

And so we are leaning into that possibility, as hard as we can, working to stay positive and living with intention every single day. And now we believe we have results to lean into as well.

Chris has been in the trial for several months, and while we do not know whether he is on the actual drug or a placebo, the disease since that initial dose does not seem to have progressed. His right hand and forearm remain the only affected areas of his otherwise strong and healthy body.

Someone has to be the first person to live with ALS rather than die from it, and one thing I've always known about Chris is that he finds a way. No matter the obstacle, no matter how unprecedented the situation may be - he always, always finds a way.

We know that our hockey family will want to help, and we appreciate that so much. Here's how you can do that.

Be positive and hopeful with us, pray for us in whatever way you pray, and don't treat us - most especially Chris - differently than you always have. He is the same person today he was yesterday and he will be the same person tomorrow and in two months and beyond. Hug your family, wring all the joy from each moment of your life, play with your children, and be present - all things at which Chris has always been wonderful.

Continue to love us and love our kids. Of all the devastation this diagnosis brought, the idea of telling the two of them they were going to lose their dad was the most crushing. But now we have hope and, we believe, a different story.

The most tangible way you can help us is by donating to research. ALS is a rare disease, and rare diseases aren't easily cured. Fewer than 20,000 people in North America are estimated to be living with ALS. Of them only 2,000 are living with familial ALS, the kind caused by a gene passed down within a family. And yet this has torn through Chris' family. At the University of Miami researchers are focused on developing treatments for ALS, including those with familial forms of the disease. They have pioneered the study of the pre-symptomatic stage of ALS with the goal of one day being able to delay or even prevent the disease. With your help they can afford to do more and do it faster. To donate, please visit this link: http://uom.convio.net/goto/chrissnow

The next most powerful thing you can do for us is to believe in this treatment. Our hope is rooted in the results we believe we are seeing and in the optimism expressed by doctors who have spent their careers studying this disease.

As our neurologist said after Chris received his first dose in the trial - "We're here to make history."

- Kelsie Snow

As of 28 September...

Originally Posted by sureLoss

https://twitter.com/user/status/1707396071373340906

Rest in Peace, Chris Snow.

[DeluxeMoustache]

Man, tough to hear. Really nice guy, we chatted about advanced stats at the poker tourney a few years back, and I really appreciated his time and insight.

Make history, Chris! You’ve got this!

[Reggie Dunlop]

Man, that's tough news.

[Cali Panthers Fan]

ffffuuuuuuuuucccckkkkkkk......

That seriously sucks.

I don't like to sugar coat it, it's an early death sentence. It's just a matter of how much time he has left before the disease fully takes over.

All the best to Chris' family at this time. That's truly horrible news and even though I don't know the guy at all, I'm deeply saddened to hear it. Nobody's family should have to go through things like this.

[bdubbs]

####ty situation and disease. That said, I hope the treatment works out for this case and for any others who are unfortunate enough to have to deal with ALS. I've donated a bit just to help out. Thanks for posting.

[looooob]

F@ck ALS
Seriously

[Flames Fan, Ph.D.]

Hopefully they found a legit trial rather than a lot of the bs stem cell / gene therapy trials that have been plaguing the US lately.

I think biogen is running a legit one that sounds similar to what is described in the article.

[looooob]

Obviously particularly devastating to this family given the familial nature


on the other hand as a single gene form of ALS does theoretically give a mechanism for therapeutic intervention- yes an 'exciting' time for therapy for genetic rare diseases but very early days...which may not be comforting for rapidly progressive disorders such as ALS




former CFLer Michael Soles has been battling ALS for about 15 years now, so protracted disease courses- while not the norm , are not unheard of

[Matt Reeeeead]

Chris is a great guy, and I am fortunate to get to work with him at the Flames. He's a big part of the strategy and decision making of the hockey ops group... but even more than that, he's just a great guy and family man.

It does sound like from Kelsie's article that there is legit hope in the treatment he is taking in Miami. There is a link on the page (also copied below) to donate, with the funds able to help expedite the quality of the research and treatment. Would love to see some love from Calgary Puck in supporting this initiative... and honestly, its a disease that goes well beyond Chris, and if the new research can work, its a great thing to get beyond. -Jamie

http://uom.convio.net/goto/chrissnow

[Parallex]

Damn. That's rough.

Thoughts and Prayers.

[northcrunk]

Sucks. My grandma died of ALS. It sucks big time

[TheScorpion]

God damn it. Terrible news.

[Toonage]

Lost my Aunt to ALS. Wish he and his family all the best in this fight.

His wife is right. Someone has to be the first to live with this rather than die from it.

[dammage79]

Godspeed Mr. Snow. Lou Gherigs disease is a tough nut.

[IamNotKenKing]

This sucks balls.
Good luck, Godspeed and kick its ass.

[MoneyGuy]

I had a friend die recently from ALS. No cure for that terrible disease. My friend couldn’t even toilet himself. I wish this guy all the best.

[Oil Stain]

Originally Posted by looooob

Obviously particularly devastating to this family given the familial nature


on the other hand as a single gene form of ALS does theoretically give a mechanism for therapeutic intervention- yes an 'exciting' time for therapy for genetic rare diseases but very early days...which may not be comforting for rapidly progressive disorders such as ALS




former CFLer Michael Soles has been battling ALS for about 15 years now, so protracted disease courses- while not the norm , are not unheard of

I think the disease takes a few different forms.

My grandpa for instance got wiped out in around a year. He could still walk until essentially the very end, but lost his voice early on.

Others might live for a couple of decades and those seem to be more the ones who remain able to speak, but confined to a wheelchair.

I don't think they really have any proven effective treatments either way.

At least Snow is rich and will hopefully be able to access experimental treatments.

[Erick Estrada]

That's terrible to have it go through a family like that. Let's hope he's the one to crack this nut.

[Matt Reeeeead]

Originally Posted by Oil Stain

I think the disease takes a few different forms.



My grandpa for instance got wiped out in around a year. He could still walk until essentially the very end, but lost his voice early on.



Others might live for a couple of decades and those seem to be more the ones who remain able to speak, but confined to a wheelchair.



I don't think they really have any proven effective treatments either way.



At least Snow is rich and will hopefully be able to access experimental treatments.

Rich would be a strong word. Paying your dues as an analytics guy in the NHL on a single income with two kids is not a quick rich scheme by any means. I’m sure he could use some help from the whole hockey community to expedite expensive ground breaking research.


Sent from my iPhone using Tapatalk

[serratedmuffin]

I feel for him and his family. My dad died a year after being diagnosed with ALS. The rapid downward spiral is not only really hard on the person but their family as well. The ALS society of Canada was a MASSIVE help for my family and helped us with some equipment we needed when we couldn't handle it all ourselves.
Best of luck to him and his family. They're going to need every bit of luck and compassion they can get!