Ataxia is a progressive, neurological condition that affects mobility; balance; speech; vision; hearing, and can even lead to heart failure. Around 10,000 people in the UK live with it. There are no treatments and no cure. Ataxia Fractures Lives.
The campaign for 2018’s International Ataxia Awareness Day is now over. Thank you to everyone who took part! Our goal was to spread the word about ataxia beyond our own networks, and highlight to the general public through social media what ataxia is.
And we succeeded. With your help, we hit some of the biggest visit records to our website and social media channels that we’ve ever seen. On the day, we saw a 359% increase of visits to the website, 89% of whom were first-timers, and many of whom read more about the condition. This year has been a huge step forward for ataxia awareness. Here’s to the next!
You can read more about the campaign below, and which generous celebrities endorsed it, shared it and supported it.
“It’s a lot for a 20-year-old to be told – a lot for anyone: “Oh, by the way, you’re now considered disabled. You will get worse over time and will be in a wheelchair in 10 years. Oh – and possibly die by 35″.”
It makes others see you differently
“I was in a cell all night for drunk driving. The detective came to take my statement and fingerprints. He also gave me a date when I had to appear in court. During the court proceedings, ataxia was briefly mentioned, but the prosecutor disputed it on the basis that I ‘looked fine’ and ‘walked OK’.”
It turns your body into a prison
“Even when I go to the toilet, Mum has to help me with my clothes.”
And it’s progressive
“It’s like a crack in a car windscreen: it may start very small, but you know it’s not going to go away; it’s only going to get larger…”
Children as young as eight years old are already in wheelchairs.
Their mobility, speech, vision and hearing are already fading.
By 40, their hearts are already failing.
There’s still no treatments or a cure for ataxia. It’s the cruellest condition, and you’ve only just heard of it.
Tweet @AtaxiaUK #AtaxiaFracturesLives
All of the quotes featured on this page are taken from articles written by or conversations had with people in our community. You can read their stories by visiting their Blog page.
A huge thank you to all of the celebrities who have agreed to take part in our campaign, including Emmerdale star James Moore, BBC’s Sally Bretton, comedian Dom Joly, Eastenders’ star Kellie Bright and TV-star magician Jamie Raven.