Participating Project

Project information

Ataxia UK: finding a cure for this generation

People with ataxia live with a debilitating and progressive condition that threatens health, mental wellbeing and independence. Our 16-30’s project supports young people with the condition and funds research towards finding a cure that will benefit all people with ataxia in the long term.

March 2018 - March 2020

Charity information: Ataxia UK

Ataxia UK logo
  • Need

    Need

    Young people diagnosed with ataxia must face the bleak truth that their balance, speech and general health are now in steady decline. They are part of the 10,000 people in the UK who have ataxia, for which there is no cure. We want to find treatments and cures for ataxia for this generation, whilst supporting them following diagnosis.

    Solution

    There are two ways our project will help:
    •Firstly, we want to find treatments and cures for the ataxias.
    •Secondly, we want to give 16-30's a platform to meet one another and talk to other people who can genuinely empathise with their situation.

  • Aims

    Aim 1

    To find treatments and cures for the ataxias for this generation

    Activities

    » This will involve many fundraising activities in the coming months.

    By logging the success of our fundraising campaigns and producing regular research progress reports.


    Aim 2

    Fund ways to support and improve the mental wellbeing of young people with ataxia

    Activities

    » We aim to hold seminars for the young people in different areas of the UK for young people using mental health professionals.

    By holding more events for our young people to attend, and ask for feedback through surveys to ensure we are achieving our aim.


    Aim 3

    Form a 16-30’s Ambassadors programme

    Activities

    » Recruit and train members of our 16-30's project so they can take control of how the public perceive ataxia.

    Our ambassadors will spread awareness of the condition through attendance at Exhibitions and events.


  • Impact

    Impact

    We hope to raise sufficient funds to enable us to carry out research to find treatments and cures for the ataxias. This will be demonstrated by suitable research projects being successful.

    We will improve our young people's mental health and self-esteem. We will demonstrate this by showing growing attendance and participation in our group and by getting frequent feedback from members. Concentrating on our young people now promises better wellbeing for all generations in the future.

    Risk

    The success of this project relies heavily upon encouraging donations from philanthropists, our own donors and raising awareness of the condition to the wider public. This will be done through carefully planned campaigns.

    We need to recruit more young people into our Ambassadors programme. Raising funds to cover the costs of the event, improving their self-confidence and minimising the costs of attendance for our members, will encourage them to attend.

    Reporting

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

  • Budget

    Budget - Project Cost: £30,000

    Loading graph....
      Amount Heading Description
      £20,000 Research Funding for research towards finding a cure.
      £10,000 Ambassador and confidence media training and mental wellbeing
  • Background

    Location

    The project will be managed from our head office in Highgate, London. We will aim to host events across the country so as many young people as possible can attend.
    Our group interact with one another predominately through a private Facebook group administrated by ourselves, so we would also look at ways in which we can engage these young people through the internet.

    Beneficiaries


    If we can find cures and treatments for ataxia, an estimated 10,000 people living with ataxia in the UK would have their lives transformed.

    Although this project is aimed at younger people, our focus on wellbeing and finding a cure are benefits that will carry over to anyone with ataxia. As such, in the future, all generations of people with ataxia will benefit from this project.

  • Why Us?

    Why Us?

    We are by far the largest national charity that supports people with ataxia in the UK.

    We are looking for funding to grow a project that has already been shown to be successful and a solid foundation of active group members. We have had feedback from this group: we know what young people with ataxia need and want.

    Read more about the Charity running this project.

    People

    Julie Greenfield, Head Of Research

    Julie is our Head of Research, and manages the funds we allot towards research.

    Stephanie Marley

    16-30s coordinator: Stephanie is the first point of contact between our young members and the charity. She organises and attends our 16-30s events

Independent Living

To us, the group is worth its weight in gold. Aila has forged some genuinely close relationships. Now that she has friends with ataxia who encourage her to stay positive, give advice and who believe in her, the whole family feels less alone and part of a like-minded community.

Anneli Figura