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"Bike for Life" Ride
Kathryn Parkinson
"Bike for Life" Ride
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From 1st - 9th August I have pledged to ride a bike all the way from Sydney to Brisbane to help raise funds in support of the Spinal Muscular Atrophy Association of Australia (SMAA). We hope that with your help, this 'Bike for Life' ride will raise valuable funds for the SMA disease and its effects on the individual and his/her family.
People with SMA generally appear normal at birth; the symptoms develop as early as three months in the most severely affected, around one to two years of ages in the moderately affected, and more rarely in the late childhood or adult years in mildly affected individuals.
There is no known treatment for SMA; historically, nearly half of babies born with the most severe form of the disease have died before aged two.
All people with SMA have a higher than normal risk for progressive disability. The most severely affected are at risk for breathing complications and premature death.
SMA is the number one genetic killer of children under 2 years of age!
Very few people have ever heard of it, and 1 in 40 people carry the gene.
Fortunately, there is much SMAA can do in providing the required care along with the many possible treatments becoming available that my help alleviate some of the symptoms to improve the quality of life but not to necessarily extend it!
For a more detailed explanation of SMA and the valuable services and support offered by SMAA, please visit the SMA website - http://www.smaaustralia.com/
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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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