Claire and Cherry Pie

A Symphony of Science for Dysautonomia

Are you someone who likes to join in or do you prefer to sit back and take it easy?  Do you like to get up and be involved, find new friends and new communities, new things to do, new inspiration and new ways to have fun?  I do!  I’m such a joiner, I inherited that from my mum who inherited it from her parents (and they most likely inherited it from theirs).  We used to have a running joke that whenever mum went along to a meeting for a school committee or club or other organisation that she would end up on the board for it – actually it wasn’t so much a joke as an observation.

When I was diagnosed with Dysautonomia 4 years ago I didn’t really wonder what there was that I could do to help others with it.  I wouldn’t have known where to start and, to be honest, the thought didn’t cross my mind – nothing really did past all the feelings of being overwhelmed etc.  Later on I participated in some research being conducted by my Cardiologist through the Baker IDI Heart and Diabetes Institute in Melbourne and it made me realise that I can actually do things to help, even if it is not much and my capacity to do things is limited by my health.

I now look at it this way; anything that could help make living with Dysautonomia easier in the future or even help find a cause or cure for it is completely worth it and must be tried.  It is my responsibility as someone who can participate, to participate.  Even if you don’t suffer from a medical condition, medical trials are always looking for healthy controls and organisations that conduct research always need more money to continue their work, there is always a need for blood donors and it’s quite easy to increase your own awareness of different conditions and the impact they have on people living with them.  Everyone can help make our world healthier, save lives and improve quality of life for people living with chronic illness; first you need to want to do it, then you take the next step.

Dysautonomia is not a well-known condition.  As far as conditions that affect the heart and circulatory system go, we are rather overlooked.  Hypertension, diabetes, heart failure and various arrhythmias are far more notorious and receive significantly more support both in terms of awareness and funding for research.  If you were an Australian or a New Zealander living with Dysautonomia you would be forgiven for thinking that all of the awareness-raising and research into Dysautonomia goes on in America – this is largely because they have the budget and the web presence.  Fortunately this is not the case; in Australia, the Baker IDI Heart and Diabetes institute conducts research into Dysautonomia which is funded by the Greg Page fund for Orthostatic Intolerance – gosh that’s a mouthful!

This year I have been working with the fundraising team at the Baker and my lovely friend Hoang Pham (ABC young performer of the year and internationally awarded musician) to put together a concert to raise awareness of Dysautonomia and much-needed funds to help finance the vital research being conducted at the Baker.

On September 30th at Federation square in Melbourne at 7:30, Hoang will be joined on stage by Violinist Anna Da Silva Chen, Cellist Eliza Sdraulig and vocalist Nicole Wallace for an evening of expertly performed classical music emceed by Greg Page, the original Yellow Wiggle and fellow Dysautonomia sufferer.  It’s going to be a wonderful evening, the research team at the Baker have put together a presentation on the research they have been conducting into Dysautonomia and that will be presented on the night too by Melbourne Cardiologist Dr Gautam Vaddadi, I can’t wait to hear what they have to present.

A Symphony of Science

I hope to see you there!  Click here to get your tickets or donate
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6 Comments

  1. Robyna | the Mummy & the Minx

    Congratulations on the upcoming event – I hope it goes well. If I lived in Melbourne, I’d be there. I did not know about Dysautonomia before reading your blog, so you are raising awareness by writing as well.

    Reply
    1. Claire and Cherry Pie (Post author)

      Thank you Robyna! I’ll post about it afterwards and let you know how it went!
      I’m so glad to her my blog is helping spread the word 😀

      Reply
  2. Kate @ One Small Life

    What a wonderful thing to do – you’re not lying, you really are a doer! I hope the event is a wonderful success for you. x

    Reply
    1. Claire and Cherry Pie (Post author)

      Thank you Kate!!

      Reply
  3. Isabel

    Good on you Claire. I would totally come to that wonderful concert if I was in Melbourne. Will send the details on to my Mum. Hope it’s a roaring success!

    Reply
    1. Claire and Cherry Pie (Post author)

      Thanks Is! I know you would 🙂
      It’d be great to see your mum, haven’t seen her in ages!

      Reply

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