ROB MURRAY: I’m speaking today with Calgary Flames Assistant General Manager Chris Snow and his wife Kelsie Snow. The Calgary Flames are taking on the Winnipeg Jets tonight at 8:00 on Sportsnet. Just like with every Flames game there’s a 50/50 draw. We’re doing it all online this year. Tonight’s 50/50 is really special. What’s going on?

CHRIS SNOW: The proceeds will go to our foundation which is entirely devoted to helping fund a cure for ALS. This is our life’s work, aside from quite honestly keeping me alive for the last year and a half to two years. The Flames have been unbelievably supportive with creating a trick shot challenge last year as well as this and other initiatives to help us realize our goal of at least a half a million dollars for research. Right now we are just north of $300,000.

RM: This initiative is funding innovative ALS research. What can you tell us about that?

KELSIE SNOW: The money that we sent to the hospital in Toronto, Sunnybrook, which is where Christopher started the clinical trial that he’s in now, is a really exciting first phase trial that will basically open up the blood brain barrier and work to administer an ALS drug directly to the brain. One of the problems with a lot of ALS drugs, and where they fail, is that not enough of the drug has crossed the blood brain barrier. If this is successful it could really open up the ability to try drugs that previously “failed” in clinical trials. That’s a really exciting thing that Dr. Lorne Zinman is doing there. We’ve always been very mindful of making sure that we’re putting whatever money we’re raising in very specific places and hand picking where it’s going, because we really believe that research is the way out of this disease.

RM: That innovative research and that treatment, Chris, I think you’re an early success story from that. The fact that we’re having this conversation today – I understand you’ve really beaten the odds so far with ALS.

CS: As unfortunate as I was to be diagnosed with this, I was very fortunate I was the first genetic cause of a disease, so it was the first that researchers and doctors got their hands on. I was given a year to live as I had the most aggressive sub-mutation of this genetic mutation I have, and here we are two years later. The issue is that my cause counts for only 2% of all the cases out there, and there’s a successive trial for another genetic cause, but the reality is that at 90% of individuals who walk in to a doctor’s office and are diagnosed are told to go home, finish your will, check your life insurance policy, and get ready to die. Eighty years after Lou Gehrig, the most famous person to die of this died of this, there’s still no cure and that’s just not good enough.

RM: What are the details on the 50/50 for tonight?

CS: Visit this website. A lot of these nights the pot exceeds or is around $200,000, and therefore $100,000 is going toward a charitable endeavour. The record this year is $406,000 and our objective is to top that. If we can do that we’ll be north of half a million dollars raised.

RM: Outside of this 50/50 raffle tonight are there other ways people can support the #SnowyStrong initiative?

KS: You can go here and you can donate through the Flames Foundation here in Canada, or if you’re in the US to the Miller School of Medicine at the University of Miami, which is where Chris was actually diagnosed and where they have a large research study and a really exciting upcoming clinical trial where they’re specifically studying familial ALS. Only about 10% to 15% of all ALS is familial but Chris’ is ALS is familial. We’ve lost his dad, two uncles, and his 28 year old cousin to this disease just in the last two generations. We have a big stake in figuring out familial ALS as well. Those are two different options outside of the 50/50, and I think you can still get your Flames fan cut out and the proceeds from that are going to #SnowyStrong.

CS: That’s right. We’ve done this cut out campaign where for $125 you have a cut out in the seats for the rest of the season and it gets mailed to you at the end of the season. My kids are really excited. We’re going to have a whole family section cheering them on, our cardboard family.

RM: Is there anything else either of you would like to add?

KS: Since we went public with Chris’ diagnosis I have been sharing our story on my blog, then a few months ago I started a podcast as well to share our story and hopefully down the line other people’s stories of loss, sadness, and grief. That’s called Sorry, I’m Sad and it can be found wherever podcasts are. Just more spaces to talk about ALS, to bring it out of the shadows, and to bring just in general conversations about grief and loss out of the shadows, because while our story is specific to us and specifically about ALS grief and loss are very universal.

Tickets for tonight’s 50/50 draw for #SnowyStrong are on sale now and will close at 11 PM.