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Posted by on Jul 23, 2018 in CRPS / RSD | 0 comments

Max’s 2-month update (23.07.2018)

Max’s 2-month update (23.07.2018)

If you’ve been following along on my rare disease & chronic pain patient journey, you may recognize Max. He’s a 3″ high stuffed bunny, with long floppy ears. And an orange carrot-snack.

Max comes with me when I go for bike rides, something many doctors thought I’d never do again after being diagnosed with Complex Regional Pain Syndrome (CRPS; some people still use its old name; Reflex Sympathetic Dystrophy or RSD).

Now you’re probably asking why a grown woman would bring a stuffed animal on a bike ride, right? Well, orange is is the colour for CRPS. So I use Max’s orange carrot to raise awareness of this rare disease. How?

Whenever I stop to take a photo of Max, at a park or other public area, someone usually asks what I’m doing. So I explain that his carrot is the colour of a rare disease… and then the person will usually ask about the disease. He’s my little conversation starter, to raise rare disease awareness!

A 3 inch tall stuffed bunny, at a historic building

Photo: Sandra Woods, at Stewart Hall historic site

And, as of May 27th of this year, Max is also collecting pocket change donations for a Pain Management Unit (PMU) at a local university hospital. Here in Canada, our hospitals aren’t for-profit, so most have charitable foundations.

And we Canadians have something else our American neighbours don’t have – pocket change that includes $1 and $2 coins! A lot of folks dislike having those heavy coins in their pockets or purses, so Max offers to collect it – to a “Max”-imum of $5 – for charity  ‘-)

This all started because I’d decided to collect all our pocket change at home, and donate it. Then a few friends read about my idea in one of my blog posts – and decided to add their coins, too. And they mentioned it to a few others…

I started this fundraising effort on May 27th because it was the 2-year anniversary of my diagnosis. I’d just spent a few days at a national medical conference, as a “patient partner”, and heard from some other patients about their individual fundraising efforts.

So I set a goal to try to raise as much money as I could within a year, by May 26, 2019, just by collecting pocket change. The very small national patient group for my disease is based in another province, and I wanted to raise money for something closer to home.

The local PMU doesn’t only treat patients, it also does a lot of research on chronic pain diseases, so I thought it would good to raise some funds for them.

That PMU is the Alan Edwards Pain Management Unit (AEPMU), with the Alan Edwards Centre for Research on Pain (AECRP). Both of these centres are at the Montréal General Hospital (MGH), which is part of the McGill University Health Centres (MUHC). Because there are very few specialized PMUs in Canada, this one treats patients from across the province.

And now Max is also helping me raise pocket change donations for the AEPMU/AECRP by posing in photos! He’s willing to pose in photos with other folks, or to tag them on Instagram… I think this photo, with 2 police officers on their bicycles, will be really hard to beat!!

A 3 inch tall stuffed bunny, with 2 police officers

Photo: Sandra Woods (with permission)

And so far, Max has raised over $150… in pocket change! So we’re on track to meet our 1 year & (now) $1,000 goal, to donate $1,000 to the AEPMU/AECRP. Once the donation’s made, I’ll find a way to post ‘proof’; maybe a photo of the receipt…

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