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You can read Ataxia UK's press release about the Exeter Awareness Campaign here. To get in touch with Ataxia UK for case studies or to arrange an interview with members of the South West Branch, please contact Communications Officer Stephanie Marley ([email protected]) or call the office on 020 7582 1444
This awareness campaign aims to reach members of the south-west public and healthcare professionals alike to tell them about the ataxias: a set of rare, degenerative neurological conditions that affect balance, mobility and speech.
More than 100 types of ataxia affect over 10,000 people across the UK, but only 10% of the population have even heard of it.
It's probably time that you did.
'Ataxia' is a Greek term meaning 'lack of co-ordination,' but this barely covers the range and variety of symptoms that can attack a person who has it.
Walking becomes hard, and for some, impossible; speech becomes slurred and swallowing dangerous; hearing is often affected; even the heart can grow strained. Expressing these symptoms at the doctor's often results in a misdiagnosis that can persist for years, whilst expressing them in public results in accusations of being drunk and disorderly. People who have ataxia have been arrested and detained for being who they are.
As if that isn't enough, ataxia is progressive: it just gets worse.
This has to stop. As well as funding research into finding a cure and providing support to people affected by ataxia, Ataxia UK also works to raise awareness of the condition, so that people who live with it can move through the world without the extra strain of having to prove that they're sober (let alone accessing a correct diagnosis.)
That's what this campaign is all about.
It wouldn't have been possible without the hard work of the Lord Mayor of Exeter (2013-14) Rachel Lyons, who chose Ataxia UK as her charity of the year whilst in office. Thanks to this, the commitment also of the Exeter Lions Club and the hard work of the South West Branch members, the group have fundraised the money to deliver this campaign.
This campaign is built around exciting and enjoyable events which aim to raise awareness as well as much-needed funds for Ataxia UK, so we can continue supporting people who are affected by ataxia.
Why not join in or attend an event? Donate if you can, or help spread the word through social media. Let us know that you've seen one of our posters, videos or fundraising events, and stay in touch via our Facebook and Twitter channels. Help us to get the word out there and to fund the research which, we hope, will one day find a cure.
Below are the stories of our three interviewees, Bex, Beka and Phil. Ataxia has affected their lives in very different ways. Read a bit more about what life is like with the condition by clicking on their profiles, or watch the video at the top of this page to understand just how ataxia can ruin lives.
You can also read about why Rachel Lyons chose Ataxia UK as her charity of the year, a calendar of campaign events, and donate, if you like, to the charity.
Without public support, Ataxia UK wouldn't be able to support their Friends, nor fund research into finding a cure. Please help us to help people who have ataxia.Read more
Rachel Lyons, Lord Mayor of Exeter 2013-14, has been instrumental in helping Ataxia UK and the Exeter Branch to fund this campaign. Here, she tells us why she chose us as her charity of the year whilst in office.Read more
Phil has Episodic ataxia, which can attack at any time without warning. The unpredictability of his condition has limited what he's able to do for work as well as pleasure.Read more
Beka is 15 years old, and has Friedreich's ataxia. She was once an award-winning horse rider, but can no longer ride because of her ataxia. Read about the work Ataxia UK do to help support people like Beka.Read more
Meet Bex, the face of the campaign. Bex has long been involved with the Ataxia UK support network, starting her own Branch of the charity in Exeter eleven years ago.Read more