Welcome to Ataxia Foundation Ireland (AFI), 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 most 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” 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 from people who recognize what AFI are doing, our only interest is the care and support of our members.
To date, no one in AFI gets paid, AFI receives no funding from the HSE, we have no office and have been operating this way for two years and we are totally dependent on donations, and our donors and volunteers who have been so kind to us, without them, we wouldn’t exist.
It is early days yet but the time will come where some people will need to be paid and we will need an office to make things function better, if we were to do that now, our funds wouldn’t last long, so our strategy is to continue as we are until it is in AFI’s best interest to invest in a premises or employment.
We want to wish everyone who have supported us to date, donors, volunteers, other charities, members of the public a huge thank you from the bottom of our hearts.