May is
Cystic Fibrosis awareness month, so, since I’m part of a fundraiser for it next
weekend, I thought I had better spread some awareness.
At first, I
was planning to do a whole write-up about Cystic Fibrosis, but I changed my
mind because I can just send you over here where you can hear about it from the experts.
In case
that version is too long for you, basically Cystic Fibrosis is a fatal genetic
disease that currently has no cure. It causes a variety of digestive and
respiratory problems that, through persistent damage, almost always lead to
death. The average lifespan for someone with CF is 42-50 years; before research
started, it was 6 months.
Cystic
Fibrosis spreads through defective copies of the gene – basically, if both
parents have a copy of this defective gene, there’s a 25% chance their child
will be born with CF (and a 50% chance the child will be a carrier of the
gene). An estimated 4% of Canadians carry a defective copy of the gene (that
may not look like a lot, but it really is).
I, myself,
was quite unaware of Cystic Fibrosis before I met Jeremy, who runs the Dungeons
and Dragons games Colleen and I have been playing at our local board game cafe.
Jeremy’s daughter, Avril (3 years old), has CF. When Jeremy mentioned he was
planning a 12 hour D&D marathon to help raise money for CF, I was happy to
volunteer to help out (running one of the game tables and donating some
chainmaille prizes).
When I
subsequently met Avril and the rest of the family, my desire to help only grew.
These are wonderful people who are incredibly strong. Avril spent the first six
months of her life in a hospital, and her parents managed (between work and two
older children) to visit every day – something I think most people would like
to think they would do, but I suspect few could actually achieve. On top of
that, while I didn’t interact with them all that much, I got the impression
that Avril’s older brothers are not only completely on board with helping their
sister get better, but they don’t seem to resent the extra time and effort
Avril’s condition demands from their patents. In children that age, I find this
remarkable. This is a family that very much deserves to have this struggle removed
from their lives, and that alone makes the fight against Cystic Fibrosis worth
the funding.
So, with
all that said, if you’re interested in helping in the fight against Cystic
Fibrosis, please don’t hesitate to donate (every little bit helps). Let either
Colleen or myself know if you want to sponsor Colleen as a player in the
marathon – but do so before this Friday, because the event is this Saturday
(May 13th)! The more money Colleen raises, the more benefits she will gain to
help her team make it through the marathon.
Or, if you’re
running late for that, you could always donate directly to Avril’s Angels –
Jeremy’s team that will be participating in the Cystic Fibrosis walk on May
28th. Colleen’s character doesn’t get cool new gear, but the money gets where
it needs to, which is far more important.
You are now
as aware of Cystic Fibrosis as I am. What you choose to do with this
knowledge... I leave to you.
Also, make sure you check out my wife's blog and her website.
If there's any subject you'd like to see me ramble on about, feel free to leave a comment asking me to do so.
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