Ataxia: attack it back!
Ataxia - what’s that? We’ve recently done some market research and that’s told us that only 9% of the population know what ataxia is. So displaying posters, any sort of publicity is very good from our point of view. It increases understanding of the condition and enables us to smooth the way for people with ataxia, so that when they go and visit medics, hospitals, therapists, people are aware of what condition they’ve got, and don’t immediately respond with the question So the reason why we got involved is actually kind of.. It was quite a personal thing. When Peter came into our room and said I’d love you to work on this project for Ataxia UK we were like - what’s ataxia? And that was actually the main drive of it. You know… What is it? Why don’t people know about it? Everyone should know about it and let’s do something where we can raise awareness for the condition – or the conditions as well as the charity. I’ve actually got SCA3 which is spinocerebellar ataxia 3, which is genetic.
My mother had it, my two brothers have it. My older brother’s daughter – my niece – she’s got it. My son’s 18, my daughter’s 25. I’m not sure if they have it or not, but if they do, I’m praying to god they have a cure I’m not sure if they have it or not, but if they do, I’m praying to god they have a cure by the time it hits them – the onset comes on. My name is Albert Young.
Everybody calls me Al. I have Friedreich’s ataxia. I got Friedreich’s ataxia when I was 10 – I got sick and then gradually it affected my ability to walk.
I’m called Orlando Cardozo, I’m 13 and I have Friedreich’s ataxia. I’m Lali Cardozo and I have Friedreich’s ataxia. Well it’s just really weird how no one knows about it and it would be quite nice for my friends to… when they.. If they ever ask me what’s wrong with me then I can just say ataxia instead of having to explain the whole thing. My name is Harriet Bonney. I’m the Chairman of Ataxia UK and I have an idiopathic cerebellar ataxia which means it’s of unknown cause, and I’ve had that for over 20 years - I was diagnosed over 20 years ago. It’s vitally important that we get the message out there that people know about ataxia and that we raise awareness so that people don’t make mistaken perceptions about us, don’t make judgements about us. That we are treated properly by the medical profession.
That we are managed properly, not just by medics – by health professionals as well (Dance music) I think the shoot today was amazing. I didn’t know what to expect. I think the shoot today was amazing. I didn’t know what to expect.
I certainly wasn’t expecting this I’ve had my hair done, I’ve had my makeup done. I feel like I’ve been waited on hand and foot. Rankin, the photographer, was amazing. He was very encouraging very positive, very gentle very accommodating to my needs and all the model’s needs.
I think to have – I think he’s a lovely man – but because he’s such a famous name… Because he’s such a famous photographer to have his name attached to an awareness campaign for Ataxia UK is brilliant. When you’re a writer, especially when you’re used to writing tag lines, end lines for campaigns and you have to sum it up really quickly, you don’t just want a line that’s passive. So from the point of view of Ataxia UK you want to say something in the most succinct way possible. And I suppose it initially came from a play on words. Ataxia sounds a bit like attack and obviously ataxia attacks the brain and it all kind of worked out like that.
That feeling of attack it back - we’re not just resting on our laurels Yes - there’s this awful condition out here… No it doesn’t have a cure at present, but we’re not letting that stop us and we’re still going on and hopefully we’re going to get rid of it. We’re really pleased that the posters that have been created for us include a text-to-donate phrase on them, so that we can encourage donation to Ataxia UK. Sometimes it can be quite difficult to raise money for a little-known condition and we’ve got the bold target of finding a cure for one or more of the ataxias by 2020. So all donations are gratefully received.
Every morning when I wake up there’s a different thing I can’t do. So yeah, I’m actually doing this to raise awareness. I find that the majority of people don’t know what my illness is about. So it would be good to get a message out to people what we’re all going through on a daily basis.
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