Volunteering

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

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

2018 Rebecca Run for Spinal Muscular Artophy

Rebecca Run 2018

Today I volunteered at the Rebecca Run for Spinal Muscular Atrophy. The run has been hosted in Newmarket for the last 17 years. I’ve volunteered for 16 of those years, the race just keeps growing.

As always it was a beautiful morning of running, walking, families and adorable kids. The day featured a timed 5k, a 3k run /walk and a 1k kids run. There was something for every ability and the kids show you how to get it done. Hats off to Corey and her team for another great event and to Louise for starting it all!

Today $115,000 was raised for research to find a cure. A gene therapy cure is so close but more research funds are needed to make this cure a reality. So many kids are waiting. Check out the website.

http://www.rebeccarun.com

http://www.rebeccarun.com/about-sma.html

http://www.rebeccarun.com/sponsors.html

Categories: #happydays, Other stuff, Rebecca Run, Volunteering, Weekly Smile! | Tags: , , , , | Leave a comment

Storm the Trent – in Haliburton!

We had a blast volunteering at this years SST. We can’t wait until next year to join in the fun!

Sisters

 

If you are wondering, Crash Mclaren has moved on to a splint soon to be removed! Yay! Onto our next adventure! (A blurry photo, she never stays still! LOL)

splint

Categories: #happydays, Adventure Race, Volunteering | Tags: , , , , | 2 Comments

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

Rockstar 2016!

We had a great time this weekend volunteering at the Rockstar Adventure Race. Injuries and family commitments prevented us from participating at the race but didn’t stop us from volunteering. We had a great time, volunteering lets us feel involved and connected with the race.

image

Storm Racing out did themselves this year. There were a few technical difficulties, including a devastating fire at Bark Lake just weeks before the race but I’m sure the racers didn’t notice a thing.

Our job this year was to man the swim area where racers jumped into about 8 feet of murky, fishy water looking for a silver CD. Some racers just loved jumping in the water and others not so much.

This year there was a family category. It was great seeing all the kids out trying an adventure race. This race wasn’t easy and although not everyone walks away with a medal, all the participants are winners.

 

Check out the video below!

We had an amazing day with two of Bark Lakes finest lifeguards, Laura and Elana. There were the best, professional and fun!

Perfect summer weather (for sitting on the dock in the sun) great racers and the sisters together, we couldn’t have asked for a nicer weekend!

Categories: #happydays, Adventure Race, Volunteering | Tags: , , , , | 1 Comment

Volunteering Sunday

We popped into town today to volunteer at the Easter Seals Run this morning. The Upper Canada Mall Easter Seals 10k is York Region’s longest running fundraiser for children and youth with physical disabilities. Over the past 40 years this race has raised nearly $3 million to help children and youth with physical disabilities.

Team Running Free Newmarket and the Blister Sisters were course marshals, making sure all the runners and walkers were on the right track. It was great to see such a good turn out on such a hot morning for a great cause!

Categories: #happydays, Uncategorized, Volunteering | Tags: , , , , | 1 Comment

Where did June go! Our June Update!

Just a little post to update everyone on what we were up to last month.

June was a training month for us, lots of running and stretching. As June is bug month around here and it was pretty rainy, we were on the road a lot, not too much trail time just so we didn’t get eaten alive by the mosquitoes lurking there.

We did get involved with the Relay for Life. The Relay for Life is a fund raiser that the Canadian Cancer Society holds to raise money for cancer research and to help fund their outreach programs. We don’t usually fund raise but for this event we did manage to pull it together and raise a few dollars. We decided that everyone who donated to our Blister Sister team would get a thank you gift from us so we knitted up socks, finger less gloves and running hats to give the all great people who donated to our team. The event was held in the evening at a local private school’s track. We walked 17k in the 6.5 hours we spent walking around the track into the early morning. It was particularly inspiring when they lit all the luminaries remembering folks who had passed and those who were survivors. It reminded us that we were doing this not for the ones who had passed but for the people who weren’t even diagnosed yet.

Relay for Life luminaries

This is my dad’s luminary.

The very next day we were out having a great time volunteering at ESAR – Emergency Services Adventure Race by Storm Events. The race was held this year at Hardwood Hill Ski and Bike Park, the same park that will host the mountain bike portion of the Pan Am games this month. ESAR is comprised of team made of Police, Fire, EMS, Military and Civilian teams.

Of course we weren’t actually at this venue, we were some there “out there” at CP2 and 4 checking riders and runners in an out of the check points. Checking in and out of a check point helps the organizers keep track of all the teams. If someone checks in and doesn’t check out, we can only assume they are lost or injured and they need help. Try telling an EMS guy or a cop if they don’t check back in I’m call a search party of their co-workers to go look for them. They soon caught on about the checking in and out of a manned check point. We had great time with everyone. We love volunteering at adventure races.

Glenis at ESAR 2015

A Blister Sister in action!

This weekend we are volunteering at the Rebecca Run. For the last 14 years the Blister Sisters have been there to help out any way we can. It really is the best little 5k around, family friendly and very inspiring. Check it out.

My next volunteering roll with be with the Pan Am Games #Toronto2015. I’m tasked with being a floor manager with the Sports Presentation team at Hardwood Mountain Bike Park. I’ll let you know how that goes.

Among all this volunteering we are training. Our next event is the Rock Star Adventure Race. This is our all-time favorite event. There is something about being in the bush with no idea where you are and being able to find your way out that appeals to us (and knowing if we really do get lost someone will come and find us!) With our new found skills with a compass this should be a lot of fun. A race report to come!

Categories: #happydays, Adventure Race, Other stuff, Volunteering | Tags: , , , , , , , , , | Leave a comment

Toronto2015 Pan Am Torch Relay (video)

Pan Am 2015 Torch Relay (video)

I had the privilege of participation in the Toronto 2015 Pan Am Games Torch Relay. I carried the torch in my home town, in front of a few great friends last Friday. I was beginning to think I was just not into the whole games thing until I picked up the torch. It really ignited the spirit of the games. Pretty darn cool. When they dropped me at my start point the first person I saw was the other half of the Blister Sisters! It was just awesome that Glenis was there to run with me and the whole time she was filming this wonderful video of my run. It’s a perfect keepsake for me!

The video is a little off kilter in places but after all she was running up a hill trying not to trip over any one, what a great memory!

 

 Here’s a little about the torch and flame.

  • The torch relay will start in Canada on May 30, 2015, and will make its final stop on July 10, 2015, at the Opening Ceremony of the TORONTO 2015 Pan Am Games.
  • It’s on the move for 41 days
  • There are 3,000 torchbearers
  • It travels 5,000+ kilometers on the road
  • 15,000+ kilometers in the air
  • 130 communities
  • 60+ alternative modes of transportation – canoe, bike, boat, roller coaster, air, skydiver you name it, it’s done it
  • There is a second torch relay for the Parapan Am Games in August (I’m not involved in that relay)

Here is a little information about the torch:

  • Length: 65 cm
  • Weight: 1.2 kg (heavier than I thought it would be)
  • Material: aluminum
  • 10 to 12 minutes’ burn time
  • Can withstand winds up to 70 km/h
  • Visible in all weather conditions

We have a few rules to follow about not setting our hair on fire but that was about it. You’ll notice in the video that I was surrounded by police who ran in a “pod” around me. There was a heavy police presence, about 5 more unmarked cars followed us and there were a few on bikes. I’m sure they weren’t there for me; it was all about that flame! Pretty cool!

Categories: #happydays, Other stuff, Volunteering | Tags: , , , , , , , | Leave a comment

#Toronto2015 Pan Am Torch Relay

Pan Am Torch Relay

I’ve have been fortunate in that I was chosen to run in the Pan Am Torch Relay.

Starting May 30 and running through to July 10th, about 3000 participants will move the torch though more than 130 communities. The flame will be lit in Teotihuacan, Mexico and travel by 60+ modes of transportation, least of all by me.

 

Pam Am Torch - Fast Facts

Pam Am Torch – Fast Facts

Now I always thought that torch bearing meant running miles or kilometers along a dreary highway until you see the next lonely long distant torch bearer. Ah Ha! Not so! I am running a mere 240 meters up the only hill in my little town. To top it off I will be dropped off by bus there even though my starting point is only a kilometer from my home! Too funny! I guess I just have to hill train to pull this one off!

After I finished chuckling at the absurdity of it, I started to think why I volunteered to do it.

This is my only chance to be a part of an international athletic event of this caliber. Never in my wildest dreams would I ever be good enough to compete with these amazing athletes who will be competing in the Pan Am games. This is my chance to shine!

240 meters up a hill, and I will give it my all!

Torch Fact Sheet

Torch Fact Sheet

Categories: Volunteering | Tags: , , , , , , , | 1 Comment

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