I was back at it today, volunteering at the Rebecca Run.
I started volunteering for the race back in 2001. Louise Smith and I were training for a marathon when she came up with the idea for a run to raise funds for SMA. Rebecca had just been diagnosed. It was during those long training runs that the idea to make it the best family friendly race developed.
Back then I was in charge of finding donations for the race kits. We wanted huge race kits at the Rebecca Run and we got them. We had so much stuff and not just samples sizes but full size bottle and packages of toiletries and pasta. We had to have shopping bags donated to put it all in. I even had 300 condoms donated!
It’s not like that now. No race bags to worry about but the people still come out to run and donated for the kids and their families. Corporate sponsors have come on board and their work and donations are truly appreciated.
Today was spectacular because Louise was able to stand up and announce that the new drug Spinraza, was approved by Health Canada, in July, for treatment of SMA in Canada. Yeah!
It’s a crazy expensive drug. According to the New York Times, Spinraza “will be among the most expensive drugs in the world”, with an estimated cost US$750,000 in the first year of treatment and “about US$375,000 annually after that.” Now to get insurance companies on board!
As Louise put it, this news doesn’t mean our job is done. We can’t stop until there is a cure!
So the Blister Sisters will be back at the Rebecca Run next year!
If you are looking for a fun race, chipped timed, with a family appeal consider the Rebecca Run next year. The kids can use your help.
Check out the Rebecca Run website for updates , photos of the event and a place to donate.
Such great news. Wish I could have been there.