#thisday

Outrageous

I took the day and traveled to Toronto with Louise Smith to attend a press conference and join in on a walk for SMA.

You may know that we have been fundraising through the Rebecca Run for Spinal Muscular Atrophy for 18 years to find a cure for spinal muscular atrophy. Glenis and I have been volunteering with race director Louise Smith since the race was in the planning stage.

Although a cure hasn’t been found, a drug that can help slow the progression and in some cases give back abilities has been found and is in production. Although extremely expensive, to the point that basically no family can afford it, 43 countries and the province of Quebec have approved it for all SMA patients. Canada with the exception of Quebec has said no to all SMA patients. Only patients 12 years old and under who have never walked or are not intubated qualify. That leaves out children over the age of 12 and adults without access to this life altering, potentially life saving drug.

#spinrazaforall #spinrazaforall

I saw the pain in the parents’ eyes as they pleaded for their older children. These young adults worry about their parents just as their parents worry about them. To hear the university students explain how they manage living on their own, manage classes and manage their disability was astounding. How can Canada make a decision that will make it more difficult for them than it already is? Is it the cost? Are we not all worthy?

I can’t comprehend Canada’s decision, but I will be there to help wherever I can to convince them to change their decision. Join us.

The Rebecca Run for Spinal Muscular Atrophy is on July 6th at Fairy Lake in Newmarket, Ontario. I hope I see you there.

Update: please sign. https://www.change.org/p/spinraza-for-all-canadians-with-sma

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Categories: #thisday, Other stuff, Rebecca Run, Volunteering | Tags: , , , | Leave a comment

10/150 The 16th Annual Rebecca Run for Spinal Muscular Atrophy

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. 

Categories: #canada150, #happydays, #thisday, Volunteering, Weekly Smile! | Tags: , | 1 Comment

A Friday Moment

I really enjoy running along the river near where I live. I am fortunate that I can get out there before work. It’s my awe time. It reminds me that there is a whole other world out there that I miss when I don’t get out an go for a run.

The trail was crazy icy under the fluff of snow that was falling so it turned into a death defying toddle but that gave me lots of time to take photos and just listen to the river.

Just take a moment and listen to the river…

Categories: #thisday | Tags: , , , | 1 Comment

Summer Evening Ride

I love riding my bike. We don’t do enough riding. This evening was a perfect summer evening. That sent of summer was in the air, that gentle air that is so light. Perfect for a ride.

The grain harvest is happening, and the soya beans are growing.

Categories: #thisday, Cycling | Tags: , , , , | Leave a comment

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