Dr Harriet Bonney, Chair of Ataxia UK Board of Trustees

Ataxia UK's achievements since 1965

Ataxia UK exists to ensure that people affected by any of the ataxia will receive the support and treatment they deserve. To do this, we further research towards our aim of finding treatments and cures, and 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 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.
  • 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 all at once (rather than one test for one gene). This is now available on the NHS.


Improvements in treatment and care 

 

Supporting people living with ataxia 

 

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 past.
  • We have 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.
  • 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.

Ataxia UK's Annual City Bridges Challenge, 2016

Our History

1964 Ataxia UK charity established – originally called ‘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

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

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

2001 Ataxia UK fund four research projects

2005 First Specialist Ataxia Centre of expertise opened in London

2007 First Ataxia Medical 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

2017 - Ataxia UK hold a localised Awareness Campaign in Exeter, resulting in 41% of the population recognising that ataxia is a medical condition. We are now working towards our new Christmas campaign through collaboration with marketing agency TBWA.

Ataxia UK office staff, 1988: Sue, Gnesni, Anna