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3 Runs for TAYLIN & SMA 2010
3 Runs for TAYLIN & SMA 2010
Story
Hi Friends & Family,
I have challenged myself to participate in 3 runs this year in honour of my beautiful baby girl Taylin and to raise awareness and funds for SMA.
The first is RUN FOR THE KIDS in Melbourne on 14 March 2010. (This also raises money for the Royal Childrens Hospital) Taylin spent 8 days on life support and 5 days in the ward. They saved her life there, if not, we would never have known she had SMA.
The second is MILLION STEPS FOR SMA (Run for those with SMA who can't) on 28 March in Berwick 2010.
The third is THE GOLD COAST MARATHON, (part of it, not the whole 41km's!) on 4 July 2010 with my special friend Jodi.
We feel this is Taylin's way of taking our family away for the weekends in Melbourne with family and friends and also a great holiday to Gold and Sunshine Coasts in July.
There is no cure for SMA and it is the biggest genetic killer in infants. 1 in 30 people are carriers of SMA and don't know it until their baby is born with it.
We need to raise more awareness of SMA. The SMA Accosiation of Australia is in need of funds to help sufferers living with SMA and to find a CURE.
Please feel free to join us on any of these great runs/walks!
Let's hope 2010 is the year for SMA! I would appreciate it if you could sponser me on this challenge in memory and honour of Taylin and all of the other SMA Angels,
Thanks,
Lee
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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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