Our Vision  
A world free of ataxia

Our Mission
We will fund and promote research with the aim of bringing about treatments and a cure for ataxia by 2020. We want a cure for this generation. 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.

Our Values

  • We ensure that everything we do has the needs of people living with ataxia at its centre

  • We seek to empower people living with ataxia

  • We value everyone who contributes to our work

  • We encourage and expect the highest possible standards of work and conduct in everyone associated with Ataxia UK 

The Outcomes we seek:
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 will raise awareness of ataxia.’
Providing Support
‘Ataxia UK will 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 is part of Childlife, a partnership between four charities that work together to raise funds and provide support for children and their families.


Ataxia UK’s achievements since 1965
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 cerebellar and hereditary ataxias. There are other organisations which provide support to people whose ataxia is not their primary condition.
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 Friedreichs ataxia and the mechanism responsible for turning off the Frataxin gene.

  • The development of more robust mouse models to support Friedreichs ataxia research.

  • A home-based physiotherapy intervention to improve balance in people with SCA6

  • The creation of a new genetic test which can test for 40 different ataxia genes in one test (rather than one test for one gene) - now available in the NHS.



Improvements in treatment and care 

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

  • Our publication “Management of the Ataxias: towards best Clinical Practice” provides recommendations for healthcare professionals on the diagnosis and care of people with ataxia. It is currently undergoing a significant updating and revision before entering its third edition

Supporting people living with ataxia

  • We provide a variety of information on ataxia, and its impact, and practical implications of living with ataxia and publish a quarterly magazine.

  • 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 70 groups in the last 8 years. In addition we hold, information seminars and other events.

Raising Awareness

  • In 2009 our market research indicated that only 7% of the British population understood what ataxia is. In 2014 a survey commissioned by us from YouGov shows this figure has risen to 9% with the greatest increase being in the Midlands and the Northeast, both areas where we have carried out publicity campaigns in the recent past.

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

We also work closely with a number of other ataxia organisations around the globe.

History

1964 Ataxia UK charity established – originally called as Friedreich’s Ataxia Group

1993 Gene causing the first spinocerebellar ataxia identified (SCA-1)

1996 Gene causing Friedreich’s ataxia identified  - enabling testing in the womb and a number of research possibilities

In 1990s five papers on results of trials testing treatments in people with FA published

2000 Ataxia UK’s Scientific Advisory Committee established

2000 First Research Officer employed by Ataxia UK to manage research programme

From 2000 to June 2011 24 papers on results of trials testing treatments in people with FA published

2001 Ataxia UK fund four research projects

2005 First Ataxia centre of expertise opened in London

2007 First Ataxia Guidelines published for the diagnosis and management of people with progressive ataxia

2008 Ataxia UK National Helpline 0845 644 0606 launched

2010 30 different spinocerebellar ataxia types identified

2011 Ataxia UK fund 21 research projects

2011 First Ataxia Training Day for healthcare professionals

2012 Ataxia UK fund a further 21 research projects

2012 Ataxia UK launched 2020 vision – aiming for treatments or cures for one or all of the ataxias by this date

2013 New NHS genetic diagnostic service established for ataxias as a result of Ataxia UK research

2014 - 2015 Ataxia UK rebrands and launches its new website

2016 - New Friends survey created to help determine the strategic direction for the future of Ataxia UK