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Julie Gray's Fundraiser:

Hereditary inclusion body myopathy "free falling"

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BENEFITING: HIBM RESEARCH GROUP INC

ORGANIZER: Alison

Julie Gray

THE STORY:

Alison Laird wrote -

Hi friends, I am writing this post with hope really, hope that you all can maybe help... I am really reluctant sharing this as I don't particularly want people to know there's any thing up with me, I don't like sharing about my health, but I feel for my cause and for others with the same I need to do something!
I got diagnosed last April after many years of tests with a rare disease called hereditary inclusion body myopathy (HIBM).. This condition is a progressive muscle waisting condition that will take away my mobility.. I all ready struggle to walk, climb stairs and many other things that we all take for granted.. My prognosis is I will be in a wheelchair I will barely be able to do any thing for my self at all. It's horrible devastating condition. I am a very independent person and a single mother that really does everything possible to stay active positive and happy, for myself and especially for my children.. My aim here is to raise awareness of this condition and to raise some money for research.. I am in a research study just now for the natural history to gather information on progression.. This condition should be treatable and maybe even curable! There is a lot of encouraging work going on with potential treatments as with all conditions this really needs funds.. I am hoping to get on to the next study that will be using treatment to monitor if the medication can slow the progression(fingers crossed) I am really against time as I can feel my muscles waist away as the time ticks by...
I was a personal trainer/fitness instructor. I ran every day and I ran for a cancer charity.. Now I can barely walk. I found this very hard to come to terms with and as the daily struggles become harder I have had to accept this is me now and let go of the idea of who I was. This journey has been so hard so frustrating and at times heart breaking. However I am a forever optimist and I pray one day something will help me and others like me...

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The Team: $574 TOTAL RAISED SO FAR

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Fundraiser Title

Alison Laird

Amount Raised

$574

Fundraiser Title

Karl Baxter

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Fundraiser Title

Julie Gray

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