Among other things, CF Canada funds researchers who are working towards finding a cure. Did you know that the gene for CF was discovered by researchers who were funded by CF Canada, in collaboration with the US Cystic Fibrosis Foundation, in 19891. They also advocate for better care for people living with CF, including advocating for newborn CF screening (which is now provided in all provinces except Quebec) and advocating for public coverage of medications for people living with CF2.
Hey, remember that time I played hockey for 10 days to raise money for Cystic Fibrosis? Well, yesterday when I picked up a copy of the Royal City Record (my local paper), I saw a familiar face from that game: Bill Markvoort. Mr. Markvoort was a great supporter of our game. His daughter, Eva, was an amazing young woman who died four years ago from Cystic Fibrosis, but her legacy lives on through her work to raise awareness of Cystic Fibrosis and organ donation, and through the ongoing work of her family to carry on her legacy. The family generously allowed us to use Eva’s striking image for promotional material for our hockey game:
According to the article, Mr. Markvoort turns 65 this year and he’s taking part in the GearUp4CF 1,200 km bike ride from Vancouver to Banff, with a goal of raising $65,000 for Cystic Fibrosis! I don’t know Mr. Markvoort, aside from having met him at the hockey game, but I feel like I have a sense of what he’s putting himself through – a nine-day bike ride sounds comparable in its level of gruelingness to 10 straight days of playing hockey! And I know that it really helped me out to be supported in my efforts, by both friends and strangers alike, so I figured I should pay forward all the support I got by contributing to his fundraiser.
Tonight I was back at Bootcamp after a week off due to my holidays. You know what’s a terrible idea? Taking a week off from Bootcamp. In addition to the fact that every single muscle fiber in my body is now screaming in pain, it’s really starting to hit home how very close the start of the Longest Game Hockey for CF is! One of my fellow teammates mentioned that when she went to open up some yogurt today, she noticed that the yogurt expires on September 9. September 9, of course, is AFTER the end of the Longest Game! That’s how close the game is! The game is less than the lifecycle of a yogurt away!
DON’T PANIC! Deep breaths. We can do this.
In related news, check out the awesomeness that is the car of Val Skelly, our fearless leader in this crazy ten-day long hockey game:
In other related news, a coworker of mine passed along a link to a blog to me today. It’s written by someone she knows who has Cystic Fibrosis and who received a double lung transplant last year, so that he can now live life to the fullest!
This is why we’re playing this game. People living with cystic fibrosis need our help, because researchers need money to continue to do the really important work that they do to help find a cure. We’re still looking for volunteers, donations (of course), and even a couple of players. Whatever you help, we’ll take it!
Since one of the goals of the game is to raise awareness about CF, I figured that I should blog about what CF is.
When I first heard about this fundraiser, I thought about what I knew about this disease and, sadly, it wasn’t very much. I knew it had something to do with the lungs and had a vague recollection from a biochemistry class that I took many moons ago that maybe there was a chlorine pump involved at the molecular level. But that’s all I could remember – clearly, I needed to raise my own awareness about this disease! So I’ve done a bit of reading and now present you with:
Some Facts About Cystic Fibrosis:
It’s a genetic disorder that affects many organs in the body
Signs and symptoms include:
constant cough which brings up thick mucus
excessive appetite, with weight loss
bowel disturbances, such as intestinal obstruction or frequent, oily stools
1 in 25 Caucasian people carry one copy of the gene for CF (two copies of the gene are required to have the disease)
results from a mutation in the gene for a protein called cystic fibrosis transmembrane conductance regulator (CFTR)2
this protein regulates the components of sweat, digestive juices, and mucus
a person must have two non-functioning copies of this gene to have CF
there is currently no cure for CF, but treatments include, among other things, antibiotics to prevent/treat infections (which are common), medications and physical techniques to dislodge mucus in the lungs (see picture below), dietary and drug treatment for digestive tract manifestations of the disease; as lung disease progresses, people with CF may need to be on a ventilator and, ultimately, require a lung transplant.
the life expectancy for people with CF in the US in 2008 was 37.4 years
the median survival rate for people with CF in Canada in 2007 was 47.7 years
A breathing treatment for cystic fibrosis, using a mask nebuliser and a ThAIRapy Vest
A few weeks ago, I went racing into the pro shop at Burnaby 8 Rinks, in desperate need a chin strap for my helmet – my team was playing short without me and every second that went by meant I was missing ice time! The guys in the shop set me up with a chin strap and fixed my helmet to accommodate it in record time. As I thanked them profusely for their help, one of them said, “If you really appreciate this and want to give something back, check out this fundraiser we are having for Cystic Fibrosis. We need people to donate and to volunteer and, hey, do you want to play hockey for 10 days?” And that is how I first came to hear about the Longest Game of Hockey for CF.
Yeah, I said “we.” Because rather than just signing up to be a volunteer, I’ve signed up to be one of the 40 women who will take to the ice for 10 days straight of hockey. Do I think this is just a little bit crazy? Yes, yes I do. Am I kind of scared at the prospect? Hells yeah! But am I going to do it anyway? Of course I am!
Since one of the goals of this endeavour is to raise awareness about Cystic Fibrosis, I plan to make blogging about the game and about CF a regular feature here on NTBTWK between now and when the puck drops on August 261. And not like my usual I-have-good-intentions-but-then-do-not-actually-regularly-feature-my-regular-feature2. Because unlike the stuff I usually blog about, this matters! So expect to see a minimum of one blog posting per week about something to do with this from now until August! I’ve also talked to a few of my fellow bloggers (where by “fellow” I mean bloggers that are far more influential than I am!3) and asked them to blog about the game as well.
Making It Through 10 Days
I am under no delusion that this will be easy. Hockey is an intense sport when you are only playing three periods at a time, so playing for 242 hours is going to be gruelling, both physically and mentally. We will not be allowed off the premises for the entire 10 days4, and with only 20 players per team (i.e., a regular sized hockey team) and play going on continuously, we will be playing in shifts so that we can catch a few hours rest here, a chance to eat some food to keep us going there. This means we are going to need A LOT of volunteers to help us out with all aspects of keeping this game going for 10 days. Can you spare some time between August 26 and Sept 5 to help us out5? If so, you can register to volunteer on our website.
Raising Some Cash
The other aspect of this is to raise money for Cystic Fibrosis Canada. We are looking for both individual donations and for sponsorships. You could be the title sponsor for the whole event, or you could sponsor a day, a player or even a referee! I would love, love, love to find a company that would be willing to sponsor me as their player for the game! Love it, I say! If you know a company that would like to sponsor me, tell them to contact me!
But sponsorship is just a piece of it. Every individual donation helps us get to our goal! All you have to do to donate is to go to our webpage (for example, my bio page) and click on “donate now.” Just fill in the form, charge a donation to your credit card and you even get a charitable donation receipt. It’s just that easy. And if you aren’t comfortable with donating over the internets, let me know and I can provide you with a paper form that you can fill out and mail. Perhaps you could donate $242 – just $1 per hour that we’ll be playing. Or maybe $24.20? Or really any other amount that you are able to spare! Every little bit counts!
which just so happens to be my little cousin Eliza’s birthday. Eliza, like me, is hockey crazed, so this seems rather appropriate! [↩]