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About Spinal Muscular Atrophy

Spinal Muscular Atrophy (SMA) is a rare, inherited disease that results in the loss of nerves in the spinal cord and weakness of the muscles connected with those nerves. The muscles most frequently affected are those of the neck and trunk that control posture, those of the leg and arm that control movement and the respiratory muscles which control breathing.

SMA is the number one genetic killer of children under two years of age, yet very few people have heard of the disease; 1 in 30 people carry the defective gene.

People with SMA generally appear normal at birth; the symptoms develop as early as three months in the most severely affected (Type I), around one to two years of age in the less progressively affected (Type II) and more rarely in late childhood or adult years (Type III and IV) in mildly affected individuals.

There is no known cure for SMA; historically, nearly half of those born with Type I SMA die before the age of two and children with Type II generally die before adulthood.  All people with SMA have a higher than normal risk of progressive disability and premature death.

About the Race

Stages for the ride will be completed as follows:

Day 1              Sydney to Toukley                          

Day 2              Toukley to Hawks Nest/Karuah

Day 3              Hawks Nest/Karuah to Diamond Beach

Day 4              Diamond Beach to Kempsey

Day 5              Kempsey to Coffs Harbour

Day 6              Coffs Harbour to Maclean

Day 7              Maclean to Byron Bay

Day 8              Byron Bay to Surfers Paradise     

Day 9              Surfers Paradise to Brisbane     

                          
The aim of the event is to raise funds for SMAAA and awareness of Spinal Muscular Atrophy as a genetic condition affecting a small number of people in our community, mainly very young children, leading to premature death and disability.  This ride aims to raise funds for much needed equipment and as we have very little government assistance. Equipment costs required by some of our SMA sufferers include – bi-pap breathing machine $8,000; manual wheelchair $5,000; power wheelchair between $15,000 to $30,000; hoists for bathing for adult sufferers can be over $20,000.

The SMAAA also hopes to fund a $100,000 research grant to find a cure for SMA, currently being explored at the University of WA; this is a real hope for our children’s future.

We have a lot to do and with no patron or dedicated donor support (not even government), families and friends like you are the ones who will make miracles happen.