We are very saddened today to hear of the passing of David Hanly, one of our founding Members. At this time we are thinking of David’s parents Susan & Jim, and his siblings Carmel, Jamie & Ruth and his extended family.
David will be missed by all his friends in Ataxia Foundation.
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, 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, it 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, even with the best of intentions, only a person who lives this experience could understand the challenges disabled people wake up to every morning many of which are obstacles created by poor design of transport and architecture, lack of consideration by planners, unnecessary obstacles, put there by people with lack of foresight.
“In the past we have made assumptions about disability, that it’s the Impairment that causes the problem for the person, Disability is not a health issue but much more a social and political issue”.
Lecturer / Programme Director BA (Disability Equality Studies) & BA (Health and Disability Studies) Department of Nursing, Health Sciences and Disability Studies, St Angela’s College, Sligo.
This model goes against an established “System” where CEO’s are not disabled or don’t have the condition they are representing, in many cases leads to some of the scandals in the charity sector.
However we have many non-disabled people who support us, volunteers, carers, p/a’s, family and friends and we appreciate their support. 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”.