Ataxia UK
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Well I doubt anyone is going to give this charity a chance now as I didn’t appeal for it well enough before. If you could read this and consider the charity or at least educate yourself on the disorder, I would be really grateful. This is probably the only time I’ll ever talk about it and I hope you take the time out to at least watch the videos. My hopes are that you become more empathetic towards people you may see simply as a ‘wheelchair user’ and realise there is more to some disorders than simply being immobile. On top of this, it may help you be more grateful that you were born in the body that you were born in; one that fights to keep you alive.
Ataxia is a serious debilitating condition with no cure. You may not know anyone with Ataxia or have even heard of it but apathy won’t do any good; it can affect you at any point in your life. 1 in 90 Caucasians carry the gene for the inherited Ataxia – Friedreich’s Ataxia – meaning although you may not get the disease, your children could.
Firstly, as @
Kardan; pointed out, last year Ataxia UK got £988,815 in donations, significantly lower than the other charities. It’s a small charity which covers a wide range of disorders that involve Ataxia. The aim of the charity is to research and treat these disorders, eventually finding a cure. Each type of Ataxia comes with its own problems but one of the worst is Friedreich’s Ataxia, which I will be making much reference to as, like everyone else and their charities, I’ve seen first-hand how horrible it is.
What is Ataxia?:
Ataxia is a group of neurological conditions which cause a degree of disability and problems with physical co-ordination such as walking, balance, writing, speech, sight and swallowing. In Friedreich’s Ataxia, the symptoms progressively get worse and can lead to complications of Diabetes and Cardiomyopathy (disease of the heart muscles), which is the biggest cause of death in those with FA. Life expectancy is roughly 35-50 years of age which has increased considerably. This prolonged longevity and quality of life would absolutely not have been possible without the charity. Freidreich’s has been documented for hundreds of years yet it is only in the past two decades that researchers have found the cause and gained an understanding into the biology of the disorder. Hopefully the charity continues to make progress as I and everyone else affected by it would love to see a cure for this generation.
Causes and Prevalence:
Ataxia is generally caused by damage to the Cerebellum (in the brain) or somewhere in the Nervous System. This damage results from various factors such as Genes, injuries and Gluten sensitivity.
In Friedreich’s Ataxia, a mutation in a gene called FXN causes a deficiency in a protein called Frataxin. Frataxin is essential for survival of cells in our body and without this, cells become susceptible to oxidative stress damage and slowly die off. As these cells die off, the Spinal Cord, Cerebellum and Peripheral Nerves degenerate and messages from the Spinal Cord on moving the body are unable to reach the brain. In normal people, our bodies fight to stay alive. In Friedreich’s, our body does the opposite. Imagine you or your loved ones body slowly killing itself and there’s nothing you can do but watch it happen.
Cognition remains intact yet those with FA are essentially trapped in their own body; being of sound mind but unable to express it through speech or writing. Obviously this can cause severe distress to the sufferer and their loved ones and so on top of their motor and neurological issues, they are susceptible to mental illness.
It may affect only one person but it affects everyone around them forever and could affect you at any time. 10,000 people in the UK have a form of Ataxia with 1 in 50,000 in the world with Friedreichs and as previously mentioned, 1 in 90 of Caucasians carry the mutated gene for Friedreich's which can be passed through generations.
What the charity has done so far:
Although there is no cure, the Ataxia foundation has done a lot to help understand and hopefully fight against Ataxia in the future. In only the last few decades, research has pin-pointed the gene responsible for Friedreich’s Ataxia and the causes for many other types of Ataxia. They have gained an understanding of the biological causes and what happens in the Brain and Spinal Cord in Ataxia, something that was not understand hundreds of years ago. Drug trials are being tested but the high cost and little money for such a wide variety of disorders means it can be difficult to continue research.
In 5 years they have spent £4 million on research, keeping admin fees low and having less staff means less wages. They do however pay volunteers too so the majority of the money goes towards research and drug trials, support groups and centres for those with Ataxia or supporting people who help raise money. No matter what happens, it will be a charity I will support for the rest of my life but any help given would be extremely welcome.
Their vision is to find a cure for one or all Ataxia’s by 2020!
When writing about this disorder and indeed any other disorder, it is difficult to fully give an account and image of really how badly it affects people. I myself would be apathetic to it if it didn’t affect me because it’s so unknown and thus easy to not care about. I’ve included two videos which hopefully you can give some of your time to look at. If you come across someone who walks/talks like they’re drunk, it may be because of something they can’t help. These symptoms, especially combined with walking aids, may be a type of Ataxia. These people are still cognitively well and should not be treated otherwise as they often are.
I will definitely be checking out other people’s arguments and educating myself about other disorders so as to not be hypocritical!
Thx
Resources:
A video about the charity’s aims and stories of people with Friedreich’s Ataxia,:
http://www.youtube.com/watch?v=AjqdM0mufFs
But this video really shows the devastating effects Friedreich’s has on a person:
https://www.youtube.com/watch?v=FQqyICZWBVM 
