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 have recently increased the board to seven, five with an Ataxia and two, non-disabled people, and have established our Management Committee, made up of members and volunteers, most of who have supported people with Ataxia for 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, it is important to us that we should take on these roles,
AFI is based on the “Social model of disability” which says “People with Impairments are disabled by Society” by poor planning, poor transport systems, poor access to employment & education and the continual disregard of their needs.
AFI was formed “by members for members” not as a replacement for a failed organization but as an organization that puts its members first and will make a real difference to people’s lives. AFI has received a very positive response to our charity in terms of donations and support from people who recognize what AFI are doing, our only interest is the care and support of our members.
It is early days yet and we are just at the beginning of our second year, our focus has been on the support of our members, really getting in at the root of the issues and creating a network of support for people with Ataxia as well as contributing to research.
We want to wish everyone that supported us to date, donors, volunteers, other charities, members of the public a huge thank you and a very happy 2019.