Ataxia UK

Address:

Ataxia UK
12 Broadbent Close
London
N6 5JW
United Kingdom

Telephone: 020 7582 1444

You can access the latest Ataxia Magazine here.

Ataxia in the UK

We estimate that there are about 10,000 adults with ataxia in the UK and around 500 children. Friedreich’s ataxia is the most common ataxia, with an estimated 1,200 diagnosed patients.

Our market research tells us that only 14.9%* of the UK population knows what ataxia is (*based on a YouGov poll in 2018) which has increased from 9% in 2014 and 7% in 2009.

Ataxia UK

Ataxia UK celebrated its 50th Anniversary in 2015, with a host of fundraising activities and a gala ball in November.

Anyone can join Ataxia UK which is free of charge. We currently have 4,000 members who have joined Ataxia UK.

We receive no grants from the government - all of our income is raised by our Friends and supporters, or is generously donated by trusts, foundations or corporates. Ataxia UK exists to further research towards our aim of finding treatments and cures, and to improve the opportunities and circumstances of all those affected by ataxia. We provide assistance to everybody affected by ataxia, but our research focuses on the progressive ataxias. There are other organisations in the UK which provide support to people whose ataxia is not their primary condition.

Our vision: a world free of ataxia
Our Mission
We fund and promote research with the aim of bringing about treatments and a cure for the ataxias. Until this is achieved, we will do all that we can to provide support services to the families and carers of people with ataxia to enable those with the condition to have the highest possible quality of life.

The Outcomes
Finding treatments and a cure: We are aiming for a cure for one or more of the ataxias by 2020

Improving care: We want to ensure the best possible medical and social care for people affected by ataxia

Raising Awareness: We want to raise awareness of ataxia

Providing Support: We provide services that meet the needs unique to people affected by ataxia (or that can only be effectively delivered by us), which will enable them to have the maximum possible choices on how they live their lives.

Ataxia UK’s achievements since 1965  
Research  in the last 10 years Ataxia UK has committed more than £4m to ataxia research. In some instances this research has achieved discoveries and breakthroughs; in others it has initiated a strand of research which has been built upon by others - in other words, we have provided ‘seed’ funding to kick start interest in a variety of research areas.

Some consequences of Ataxia UK-funded research:

The discovery of the frataxin gene responsible for Friedreich's ataxia and the mechanism responsible for turning off the frataxin gene.
The development of more robust mouse models to support Friedreich's ataxia research.
We are in the early stages of developing a home-based physiotherapy intervention to improve balance in people with SCA 6
The creation of a new genetic test which can test for 40 different ataxia genes in one test (rather than one gene per test) - now available on the NHS.

In addition, Ataxia UK works in partnership with other charities and we are also increasingly engaging with pharmaceutical companies as we believe this is crucial to delivering our vision.

''Ataxia UK and the pharmaceutical company Pfizer formed a partnership in 2015 to co-fund a drug discovery project for Friedreich's ataxia involving three other research institutions''

Improvements in treatment and care
We have established two Accredited Specialist Ataxia Centres (clinics) in London and Sheffield; an Ataxia Clinic in Oxford, and a list of neurologists with a special interest in ataxia.

Our publication Medical Guidelines: Management of the ataxias towards best clinical practice provides recommendations for healthcare professionals on the diagnosis and care of people with ataxia. At the end of 2016 it underwent a significant update and revision before entering its third edition.

Supporting people living with ataxia
We provide a variety of information on ataxia and its practical implications which we publish in Ataxia Magazine for example, a quarterly magazine sent out to our members for free.

We have a Helpline and Advocacy Service to support people around ataxia-related issues.

We facilitate peer support among those affected by ataxia (patients, families and carers) by providing opportunities for people to meet at Annual and Regional Conferences and through our Branches & Support Group network, which has grown from 10 to nearly 60 groups in the last eight years. In addition, we hold information seminars and other events.

Raising awareness
We raise awareness of ataxia among clinicians and the general public through the information and publicity we produce. We recently published a set of five challenging, award winning posters with the support of advertising agency TBWA.

We are active in alliances which have an interest and campaign in our areas of activity: Genetic Alliance UK, Association of Medical Research Charities, Rare Disease UK and the Neurological Alliance. Our Chief Executive has been Treasurer of the Neurological Alliance and this involvement has raised the profile of Ataxia UK with senior policy makers and government ministers

We recently held a localised awareness campaign in the city of Exeter, after which a survey demonstrated that 41% of the local population now recognise that ataxia is a medical condition.

Ataxia UK works accross the whole of the UK and is a charity regsitered in Scotland (no SC040607) and in England and Wales (no 1102391) and a company limited by garuntee (4974832).