Friedreich Ataxia (FA) is a genetic neurological degenerative condition.
Over time, FA gradually affects a person’s co-ordination, mobility, speech and heart function. FA is currently life shortening.
In 1996, researchers identified the cause of FA as an altered gene that disrupts the normal production of a protein called frataxin. FA occurs when this altered gene is inherited from both parents.
About 1 in 30,000 people in Australia have FA. Up to 1 in 90 people (i.e.1,000 out of 90,000 at an AFL match) in Australia are carriers of this gene and when both parents are carriers there is a 1 in 4 chance of having a child with FA as the altered gene is recessive.
The onset of symptoms is gradual and progressive. On average, symptoms start around 12 years of age, however they may occur before or much later that this. About 10 years after the onset of FA, most people require the full time use of a wheelchair and need assistance with physical tasks.
Generally, the capacity to think and problem solve remains unaffected.
A blood test can confirm the diagnosis of FA.
The Rotary Club of Brighton North aims to raise awareness of this seriously life-shortening disease.
Past International President, Royce Abbey AO DCM, (a Rotarian in District 9800) also lost a grandson to this terrible disease.
Our goal is to make a difference in as many ways as possible; to the sufferers, their families, people at risk of developing the disease; and to the doctors and researchers in the hope that they will discover a cure or a drug to slow down the disease.