Project information

Ataxia UK: Finding a cure for this generation 2


Currently there are no cures for the ataxias and it is often difficult and stressful to get a diagnosis.

We want to find treatments and cures through research and to improve the diagnosis, treatment and care which children and adults receive.

March 2019 - March 2020

Charity information: Ataxia UK

Ataxia UK logo
  • Need

    Need

    The ataxias are a set of rare, life limiting, progressivly destructive conditions that affect around 10,000 adults and 500 children in the UK.

    At present treatments exist for few of the ataxias, leaving over 10,500 people in the UK to face the prospect of progressively losing the ability to walk and co-ordinate their movements, and potentially losing their speech, sight and hearing.

    As the ataxias are so rare, it often takes years to get a diagnosis, and don't get specialist support.

    Solution

    We urgently needs funds to increase our Research Programme to bring forward the day when treatments and cures will be available.

    We want to improve diagnosis and care by increasing patient access to our specialist NHS Ataxia clinics, and develop new ones.

    We want to establish the first Paediatric Ataxia Clinic in the UK for children.

  • Aims

    Aim 1

    To increase the level of funding directed towards the Ataxia UK research programme


    Activities

    » Increasing the amount of Research projects being commissioned by Ataxia UK through fundraising through the Big Give Christmas Challenge

    What success will look like

    The success of this aim will be demonstrated by an increase in Research projects being commissioned by Ataxia UK


    Aim 2

    We want to improve diagnosis and care by increasing patient access to our specialist clinics


    Activities

    » We will work with the NHS to improve access to Ataxia clinics geographically and develop the first Paediatric Ataxia Centre in the UK for children

    What success will look like

    An increase in the numbers of patients attending Specialist Ataxia Clinics, a widening of geographic accessibility, the establishment of a Paediatric Ataxia Centre.


  • Impact

    Impact

    The project will bring improvements in patient experience. Speedier translation of research into practice. This will lead to earlier, swifter diagnosis for both children and adults. We will increase our research with our aim of finding treatments and cures for the ataxias

    Risk

    The success of this project relies upon
    1) finding specialist neurologists with an interest and experince in ataxia. We have done this.
    2) the NHS being willing to take over the funding of the clinic once our seed funding is exhausted. We have successfully agreed this prior to establishing our existing 3 clinics.

    Reporting

    We will report successes of the project by posting updates across our social media platforms, website and in our quarterly magazine and monthly e-newsletter

  • Budget

    Budget - Project Cost: £40,000

    Loading graph....
      Amount Heading Description
      £20,000 Research project Commission a research project
      £20,000 Service development Increasing patient access to specialist ataxia centres
  • Background

    Location

    The project will be managed from our head office in Highgate, London. The project will improve access to ataxia specialists throughout the UK at current specialist ataxia clinics and a paediatric facility developed with the NHS.

    Beneficiaries

    People in the UK with ataxia receive the best possible quality of care and a co-ordinated service that combines diagnosis, treatment, support and research. You are guaranteed to be seen by a neurologist with expertise in the ataxias.
    Our aim is to develop the first NHS Ataxia Paediatric Centre in the UK for childrens' services. This will benefit children and their parents in gaining an early diagnosis and remedial care.

  • Why Us?

    Why Us?

    We are the only national charity that supports people with all ataxias in the UK. We have the expertise and infrastructure to ensure a successful outcome to the project. We have developed successful services with the NHS to create specialist ataxia clinics in the past and are well placed to extend this service.

    Read more about the Charity running this project.

    People

    Dr Julie Greenfield

    Julie is Ataxia UK's Head of Research . She is a leading expert in worldwide ataxia research and will jointly lead the project

    Professor Barry Hunt

    Professor Hunt is Ataxia UK's Scientific Advisor and will jointly lead the project with Dr Greenfield and advise the Board of Trustees on progress