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Spinal Muscular Atrophy
Kevin Logan
Spinal Muscular Atrophy
Story
Hi,
I'm part of a team (scrambled legs) that is running a 21KM obstacle course raise for charity. My nominated charity is Spinal Muscular Atrophy. It was a disease I'd never heard of until last year. A classmate of my (then) 5 year-old was diagnosed with this condition about halfway through prep. At that time, Mila had a little difficulty running and keeping up with her friends. She was diagnosed with this rare disease, which unfortunately has no cure. Mila spends about half her time now in a wheelchair. Her condition will gradually get worse, and sadly it probably won't be too long before she is in a wheelchair permanently.
The hope from this fundraising is that it can help fund a cure. There are obviously a lot of very worthy causes out there, but if you could spare a few dollars for this is would go a long way to helping Mila and the thousands of other children in Australia affected by this disease.
As part of this fundraising, I'm also doing a cross-triathalon in October (1km swim, 20km mountain bike and 10km bush run).
Thanks, Kevin
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Spinal Muscular Atrophy Association of Australia Inc
The Spinal Muscular Atrophy Association of Australia Inc. is the first national service supporting families and individuals affected by Spinal Muscular Atrophy. As a non-government funded charity we rely solely on philanthropic bodies and fundraising to provide support, information and assistive technology to members. Spinal Muscular Atrophy is a genetic disease divided into 4 types; leading to progressive muscle weakness and wastage. This wastage of muscles not only affectes the sufferes external muscles like arms and legs, but all their internal muscles like breathing, coughing and swallowing. The Associations Equipment and Resource Library has been developed to allow members to utilise specialised equipment, aids, and educational tools. ABS documents that 52 Australian lives 1. are lost to SMA and related syndromes ( Motor Neurone disease) each month. As there is no treatment, much less a cure, our fundraising also contributes to vital research. With 1 in 35 people indiscriminately carrying the SMN gene; greater awareness provided by SMA Australia alone is crucial to the education of future generations.
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