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Spinal Muscular Atrophy Awareness Run
Brendan Scanlan
Spinal Muscular Atrophy Awareness Run
Story
Hi there!
Spinal Muscular Atrophy is a devastating condition for which there is no cure. Thia condition is fatal and is the number 1 genetic killer of infants under 2 years old.
Recently a close friend of mine and a team mate at the Southern Districts Baseball Club son was diagnosed with Spinal Muscular Atrophy. It is for this reason that on Saturday 3rd May 2014 I will be running 45 kilometres from the Fort Largs Police Academy to the Christies Beach Police Station and then onto the Southern Districts Baseball Club to raise money for research into this condtion.
I hope to raise in excess of $5000 and will be hosting a range of activities from 1.00 p.m. at the club on the 3rd of May 2014 after my run. To assist me please go to http://run.gofundraise.com.au/page/ScanlanB to donate.
If anyone has any other ideas on how to raise more money or events that we can do on the 3rd May 2014 please let me know. Any help would be much appreciated.
Thanks so much for your support!
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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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