Doing My Bit…

Fundraising for a rare illness is a tough gig.  We don’t have marketing teams or big business sponsorship. There isn’t a Dysautonomia Awareness holiday, although October is unofficially our awareness month.  Down here in Australia and New Zealand, our numbers are quite small.  There are around 400 of us across Australia and New Zealand, that we know of. We do our bit any way we can.  For some of us that means raising awareness by typing our stories out onto the web.  Maybe we host cupcakes-for-a-cure sales or write letters or lobby government with regards to medications access and other related issues. 

My friend Michelle over at the hilarious Living With Bob blog has started up an online donation page to help raise funds for the Baker IDI institute in Australia.  They are conducting research specifically into disorders related to syncope (fainting).  Every Dysautonomiac has had to deal with that scary side of things at some time in our illness. The things they may find in their research are the closest thing to dysautonomia research in this part of the world.  It’s important that we help in any way we can.  But we are a small group of people and most of us are too sick to do fundraising runs, awareness feats worthy of media attention, or much of anything that is going to inspire people to reach into their pockets to raise money for research.  It’s a frustration that perpetuates the invisibility of illnesses like ours in the wider community.  We aren’t well enough to push for attention, but we need it.  So today, I’m letting my fingers do the talking.

Because Michelle has so valiantly taken on the task to raise money for research, and perhaps because she has been feeling too crap lately to get vertical, I felt like it was time we all pull together and lend some support to her fundraising efforts.  Here is a link to her fundraising page.  I will be coming up with some other ways to help Michelle raise money for Dysautonomia Awareness as we draw closer to Dysautonomia Awareness Month.  But for now, I thought I’d introduce you to her efforts.  Maybe you can help.  Maybe you know someone who could help?

Here she is, clicking her Dorothy heels for Dysautonomia.
https://give.everydayhero.com/au/clicking-my-heels-for-dysautonomia

Fall Seven, Get up Eight(7)

5 thoughts on “Doing My Bit…”

  1. Interesting topic. I was trying to think of ways to increase awareness that people could do who weren’t feeling well. One thing comes to mind-Pinterest. There are all kinds of community boards and I only saw one dysautonomia board done by an individual rather than a group. It might be a way to make connections with people who can organize awareness and fundraising events. Here’s one from Debra Kay Lawson– http://www.pinterest.com/debrakaylawson/disautonomia-gastroparesis/ . I also found someone who seems to be very plugged into the dysautonomia fundraising/awareness scene. Ilana Jacqueline is a 24 year old patient advocate for dysautonomia and might be a good connect-here’s a Cosmopolitan Magazine article about her http://www.cosmopolitan.com/health-fitness/advice/a4368/rare-diseases/ Her blog is called Let’s Feel Better: Dragging Dysautonomia Through my Twenties One Bitchy Blunt Belligerent Blog Post At A time- http://letsfeelbetter.com/

    1. Thanks Barb! I have heard of Ilana through Dysautonomia International. Thanks for pointing me in the direction of Debra Kay Lawson’s board. I have some ideas for things I am keen to do, just looking into the possibilities. Thanks so much Barbara!

  2. Oh if only I could do more.I read your posts and wish I had magic. Oh honey I know you don’t want sympathy.

    I have days where I have trouble functioning, but it’s just my fucking head. You are one of my levelers at the moment. When I want to crawl back to bed cause I feel it’s too hard you remind me to be greatful for my body health. you inspire me.

    I like Michelle’s idea. I can’t belive there is no active charity for Dysautonomia. All I can think is a campaign via social media and make a Dysautonomia awareness day (if there isn’y already one). Jo xx

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