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: