Tuesday 10 December 2013

Clicking my heels for Dysautonomia: Raising funds for The Greg Page Fund for Orthostatic Intolerance and The Baker IDI

During this year's Dysautonomia Awareness Month I spoke about The Greg Page Fund for Orthostatic Intolerance, Greg Page aka the original Yellow Wiggle, being perhaps our most famous fellow patient. Greg's fund raises money for research into a variety of Dysautonomias and drug treatments that is being conducted at The Baker IDI here in Melbourne, Australia.

I have pulled back from social media a fair bit over the last couple of weeks and will for the next month or two to preserve my very limited spoons. But I have decided I need a bit of a positive focus at the moment and have decided to get on board and raise some funds for the Greg Page Fund.

It took a while to work out what to do. Run a marathon? Ah no. I can't even walk to my mail box most days. Trekking? Ah not unless there's a sherpa willing to drag my sorry lump of flesh around. Dance-a-thon? Well, I do a mean set of jazz hands and I have been known to bust a move to Vogue whilst stuck in bed, but I don't know if that would count. So what to do, what to do?

Well late one night (go, 3am insomnia!) I had an epiphany. I would combine the joy of Dorothy shoes with my medical appointments!

I did a trial run when I went for my SFEMG and was pleased when the somewhat bemused neurologists let my eldest come in and take photos of me and my shoes, whilst they stuck a needle in the side of my mouth. I had multiple comments from strangers and much curiosity in the waiting room. It seems that a woman in a wheelchair dressed to the nines and wearing bright red, sky-high, glittery red heels peaks people's interest, and tends to bring a smile to the face.

So my plan was born.

For the next 12 months I will wear my Dorothy heels to every medical appointment, be it a specialist appointment, GP visit, investigation, ER visit, blood test or physio appointment. I will document the process in photos here on the blog, FB and the fundraising site. In a way it is also document a year in the life of Dysautonomia. I plan to hand our information about the fundraising and about Dysautonomia for those who question about the shoes.

All funds go to the Greg Page Fund for Orthostatic Intolerance at The Baker IDI, to directly fund research into the mechanisms and treatments of Dysautonomia, be it POTS, OI, NCS etc, at the Human Neurotransmitter Laboratory run by Professor Murray Esler.

(Professor Murray Esler, head of the lab)

So click on the link below to find out more:

So come and support me and follow along. Donate a dollar or two if you can, or share with others who may want to support me for the year, to bring glittery fabulousness to the world of Dysautonomia and support the great work done by The Baker IDI. Lets find a cure!

*With special thanks to Dejana, the Donor Relations/Community Fundraising Coordinator at the Baker IDI Heart and Diabetes Institute for helping this fundraising virgin in setting all this up.

Cheers Michelle :)

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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