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”.
Susan Carton,
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”.

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

Our Mission Statement
“To enhance quality of life for all of us with an Ataxia. We lead positive change and deliver value through experience, information, advocacy and service”.

Yours Sincerely,

Albert Young
CEO & Executive Board

2 weeks ago

Ataxia Foundation Ireland

Also at our Christmas party, board members Fergal Lynch & Rachel Byrne were presented with a cheque for €13,085.58 by Karl Carey, Skydive4Charity. This was raised at our 2018 "Jump from the Sky, for AFI" event.

On behalf of the Members that will benefit from your efforts, we would like to thank the following people who took part.

Fergal completed the skydive along with his sons Shane, Ryan & Ciaran and our youngest Skydiver to date, his daughter Alannah aged 12.

Also, Damian McDonagh, Doireann Fitzpatrick, Eoin O' Brien, Kate Kerrigan, Katie Conway, Katie Kelly from Kilkenny and her brother Mick Kelly, Margo Hannon, Liz Morris, Norah Lavelle, Redmond O' Hanlon, Rachel Bergin, Robert Lynch, Shanice O' Reilly, Sarah Kerrigan, Suzanne Lynch and last but most definitely not least, our Chairman John Kelleher.
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2 weeks ago

Ataxia Foundation Ireland

At our Christmas Party last weekend, Damien Treanor, Errigal Contracts presented our CEO Albert Young with cheque for €70,000 which was raised at Errigal Contracts Charity Gala Ball in August.

Damien is a cousin of our board member, Anita Gracey.

In appreciation, our Chairman John Kelleher, on behalf of the board, presented Damien with a carving from a piece of bog-oak significant to the area in Monaghan Damien is from.

The members & board of Ataxia Foundation Ireland are extremely grateful for this very kind and generous gesture.
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