Home

Welcome to our new charity, Ataxia Foundation Ireland (CLG) a Company Limited by Guarantee. The New Voluntary National Support Group for people affected by Friedreich’s Ataxia (The most common Genetic Ataxia) and up to 50 other Ataxia’s.

The organisation was founded by four people with Ataxia, to form the board of directors and trustees, we increased the board to seven, five with an Ataxia and two, non-disabled people, who were volunteers for many years.

We have established our Management Committee, made up of members and volunteers, most of who have supported members or many years.

Our aim is to provide support services to people with Ataxia and their families, we have established this organisation which is run and managed by people with this condition, The CEO has (FA), the Chairman has (FA) and the majority of the board have an ataxia, this is important to us that we should take on these roles, “The Lived Experience of Disability”, No non disabled person could have any idea what it is like to live with a disability, especially one as complex as Ataxia.

This model is a challenge for us, because it goes against an  established “System” that is in place, it means we have to have a succession plan, to ensure this model is maintained,  it means we are in unchartered waters, we feel strongly that the time has come for us, people with disabilities to have some autonomy. It is time for us to take some control of our futures, independence has been defined as: Choice, Control & Power, even with a devastating disability like Ataxia, we can do a lot for ourselves, “By members for members” taking a line from the Social Model of Disability:

“When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives”.

We have created a page on this website called, “The Models of Disability” Please click the link The Models of Disability. This page is important to us and is at the heart of our organisation. We want to do our bit to change things not just for people with Ataxia but people with other neurological conditions and disabled people in Ireland.

We have signed up to the Charity Regulator Authority Code of Conduct and believe in the process, it helps us as a charity to demonstrate our dedication to transparency, accountability and to assure the general public that Ataxia Foundation Ireland is doing everything right, and are delighted to announce that we have been awarded our Registered Charity Number (RCN) 20153540 and now look forward to doing as much as we can to assist our people with Ataxia.

We invite you to explore our website on a regular basis as we constantly update it and add content. We are always available by phone or email.

Please feel free to contact us at any time on 087 361 6616.

Yours Sincerely,

Albert Young
CEO & Executive Board
© Copyright 2018 Ataxia Foundation Ireland - a Company Limited by Guarantee (CLG) | Company Registration: 588973 | Registered Charity Number (RCN) 20153540. All Rights Reserved. - Enfold Theme by Kriesi