Ataxia UK works across the whole of the UK and is a charity registered in Scotland (no SC040607) and in England and Wales (no 1102391) and a company limited by guarantee (4974832).
We aim to support everyone affected by ataxia; people with the condition, their families, carers and friends.
We fund research into developing safe, effective treatments. Our ultimate goal is to find a cure for the ataxias.
We help people to live with ataxia in the meantime by providing a range of services that are not available anywhere else.
Ataxia UK is a small charity with around 12 paid staff.
We have a board of 12 Trustees, who are volunteers and consist of experts in certain areas, as well as people affected by ataxia and family members.
Ataxia UK began life modestly back in 1963, when Dr R L Hewer and Dr Norman Robinson ('Robbie') encouraged a group of parents whose children had Friedreich's ataxia to get together for mutual support. In 1965, the organisation became a registered charity, the Friedreich's Ataxia Group. The first Annual General Meeting was in 1966. From the beginning, the Group’s members were passionately committed to raising funds for research into treatments and a cure.
In 1988, the constitution was changed. The Group now welcomed people affected by all of the cerebellar ataxias, not just Friedreich’s. The research agenda broadened accordingly. The year was also significant because the research team led by Sue Chamberlain and funded by the Group finally located the gene responsible for Friedreich’s ataxia, on chromosome 9. The original Friedreich’s Ataxia Group became The Ataxia Group of Great Britain and Northern Ireland in 1997, but the charity had unofficially adopted the shorter ‘Ataxia UK’ back in 1992. Ataxia UK became our legally recognised name on 1 April 2004, when the charity incorporated and received a new registration number.
Ataxia UK is funded by voluntary contributions. In the past forty years, we have awarded millions of pounds for research into ataxia – an astonishing achievement for a small charity. We can carry on our work because of the energy, determination and enthusiasm of our many supporters. Over the years, people have given us countless hours of their time, their very best efforts, and the money they can spare. This allows us to make a difference to the lives of people affected by ataxia.
In the next ten years, we aim to establish Ataxia Centres nationwide, to continue to have a flourishing network of branches and support groups. Funding research projects into the ataxias will remain our first priority. Our ultimate goal remains to find a cure for ataxia.