4 months for Max (29.09.2018)
On May 27, 2016, I was diagnosed with a rare disease. It affects only my right hand & arm, but most of the time it feels like it’s taken over my life.
It’s a neuro-inflammatory disease, and causes horrible nerve pain – neuropathic pain. And problems with all the joints in each finger, as well as my wrist.
There are a bunch of other symptoms, too. If you’d like to know more about this disease, it’s called Complex Regional Pain Syndrome, or CRPS. You can read about CRPS in this 2017 post.
It’s a nasty & very painful disease, and there’s no cure. There are also problems with treating CRPS, because each patient presents differently. That means that different patients have different combinations of all the possible symptoms.
So for a while now I’ve been raising awareness of CRPS, and my buddy Max has been helping out. He’s a 3″ tall bunny, with long ears. Orange is the color of CRPS, so his little snack – an orange carrot – helps us bring up the topic of this disease.
To find out how a plush bunny can get folk interested in a rare disease, read about Max’s awareness-raising here!
About 4 months ago, we decided to up our game. The goal is to raise a $1,000 donation to the Alan Edwards Pain Management Unit (AEPMU), and the Alan Edwards Centre for Research on Pain (AECRP). By May 27, 2019; the 3rd anniversary of my diagnosis.
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 Pain Management Units (PMUs) in Canada, this one treats patients from across the province.
The donation isn’t for my own treatment; it’s for the centre’s overall program. The MUHC is a publicly-funded hospital centre, but the AEPMU relies on donations to run some of its specialized programs.
Max and I started by collecting pocket change at home. Then some of my friends read about my challenge in one of these blog posts – and decided to join in.
But we’re only accepting donations of pocket change, up to a “Max”-imum of $5 at a time ,-) And Max is also posing for photos! He’s willing to take photos with other folks, or to tag them on Instagram, also for pocket change.
I think this photo, of Max with 2 police officers on their bicycles, will be really hard to beat!!
At the end of our 4th month of pocket-change fundraising, we’re up to almost $350. Thanks to everyone who has chipped in a few dollars of pocket change – it’s starting to really add up!