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Ataxia. It’s like Multiple Sclerosis ganged up with Parkinson’s and played a dirty trick on Cerebral Palsy’


So reads the headline on posters for Childlife charity Ataxia UK’s new advertising campaign, featuring shots by the celebrated photographer, Rankin.

The campaign aims to raise the profile of ataxia – a condition few understand or have even heard of. As Ataxia UK’s Chief Executive, Sue Millman explains: ‘with no famous faces affected by ataxia to fight our corner, we really are invisible’. And for those living with ataxia, that only adds to the challenge.

Ataxia has many forms and can strike at any age, but most cases of Friedreich’s ataxia are confirmed in childhood or adolescence, leaving families reeling.

Children and young people like Elise and AJ must come to terms with a condition that has no cure and that will steadily erode their balance and speech - perhaps even their hearing and eyesight. And when they say ‘I have ataxia’, people stare at them blankly. Even GPs and other health professionals can be flummoxed by it.

It’s vital we raise awareness of ataxia. But we must also raise money - for research into a cure for the condition, and to provide support services to help families cope in the meantime.

What started in 1965 as a group of families desperate to improve the lives of those with this rare condition, is soon to celebrate 50 years of hard work - and achievement.

It is thanks to Ataxia UK that that we’re closer to finding a cure for this generation.  And it’s thanks to them that we now have specialist ataxia centres and clinics at NHS Hospitals in London, Sheffield, Oxford and Newcastle, driving research, diagnosing patients and providing high quality, joined-up care to people with ataxia and those who look after them.

Ataxia UK has also been instrumental in developing a nationwide network of support groups, for parents of children with ataxia, like Elise and AJ’s Mum, Mari-Vic and in using social media to help young people connect, share, advise and encourage each other.

When you’re living with such a rare condition, finding practical and emotional support from those who know and understand what you’re going through is a tremendous relief. 
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