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News
FA Clinic in Brisbane is now open. This is a gathering of specialists in the one place that are all well informed of FA. For more information on the clinic and how to book in click here.
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One of our major sponsors is Compass Expeditions.
So if you are looking for a holiday with a difference then follow the link.
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Date: 21 - 22 May -
Photography Exhibition: Wesley Misson, Ann St, Brisbane Click on the image to read how sucessful this was.
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Documentary release:
Our documentary was released February 2010. This has been created to raise awareness. Click on the image to read more about it. 
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Go the TAN
February I pushed the wheelchair the 3.8kms around 'the TAN' - the botanic gardens in Melbourne to raise funds for FA research..
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Mick's Book
Mick is a special mate and was my driver for an overland I did through South America. He and 3 of his mates rode motorbikes from London to Vladivostok and raised alot of money. This is the story of that ride. Click on the picture for more info. |
What is Friedreich's Ataxia?
Friedreich's Ataxia is an uncommon, inherited (genetic) progressive disorder of the nervous system that affects balance, coordination, movement and sensation. "Ataxia" means a loss of coordination and is usually the earliest and most prominent characteristic. Increased impairment of balance and movement can lead to the loss of the ability to walk. Speech and swallowing difficulties may also occur. It is also common for FA patients to develop cardiac disease.
Having explained that, not all FA patients will develop the same symptoms. I developed the first symptoms of FA when I was 27. I was diagnosed with Cardiomyopathy some 7 years earlier.
Symptoms
- muscle weakness and loss of coordination (ataxia) in the arms and legs
- vision impairment, hearing loss, and slurred speech
- aggressive scoliosis (curvature of the spine)
- diabetes mellitus or carbohydrate intolerance
- a serious heart condition (enlarged heart ? hypertrophic cardiomyopathy)
These symptoms reflect the death of cells in certain parts of the nervous system. The mental capabilities of people coping with Friedreich's ataxia, however, remain completely intact. For most, progressive loss of muscle strength and control leads to motor incapacitation and the full-time use of a wheelchair by the late teens or early twenties. Many require surgery for their scoliosis. There are currently no treatments or cures.
The course of the disorder is progressive. Most young people diagnosed with FRDA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.
FARA-supported research and scientific conferences provide hope and accelerate research leading to treatments or cure for people diagnosed with Friedreich's ataxia and for those coping with the related Sporadic Ataxias.
Go to Current Research to read about the new developments and trials being run.
Go to What can be done to read more about what FA patients are doing to cope with this disorder.
Go to Frequently asked questions 1 and 2 for answers to the most common questions.
If you live in Queensland (or Australia) our resource page will help with contacts for Parking Permits, mobility aids, taxi subsidy etc.
For more information go to:
The Genetics
Frataxin and its role.
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