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Welcome to our new Ataxia Foundation Ireland (AFI), website which we hope will become your first stop for anything Ataxia related.


We are the National Support Group for people affected by Friedreich’s Ataxia (The most common Genetic Ataxia) and up to 200 other Ataxia’which provides its services on a voluntary basis vital support to its members and increasing them as we  go.

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We see Fredreichs Ataxia as a genetic time bomb that is set to go off anytime on average onset happens between the  ages of 2 and 18 years of age. No two cases are the same, and there are often more than one sibling in a family affected.

No one is aware that their children have FA until onset happens to one of their children and it means that more than one sibling can be affected.

 

Once onset happens, balance and coordination are affected leaving the person requiring the use of a wheelchair within a short period. Many requiring powered wheelchairs because of the affect of FA on limbs. FA affects the central nervous system, is a progressive degenerative neurological condition.

 

Our aim is to provide support to people with Ataxia and their families, sibling and friends.  We have established this organisation which is run and managed by people with this condition. The CEO has FA, the Chairperson and the majority of the Board have Ataxia.

We intend keeping the Board of Trustees with the condition as a majority, we currently have 7 Trustees 5 with Ataxia and 2 without, we intend increasing the board ideally to 9, adding  2 more non-disabled Trustees, this model enables disabled people to not only have a voice but strength and power to make their mark in this area.

 

No two members are the same, suffer the same symptoms, this is probably to do with time of unset. Symptoms include loss of balance, requiring the use of a wheelchair, vision, swallow, coordination, scoliosis, cardiomyopathy (hardening of the heart muscle) diabetes, speech, difficulties with hands and arms, the intellect remains unaffected.

More details about Ataxia Foundation Ireland

 

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Fundraising

We are completely privately funded and are totally dependent on fund raising and donations to provide our support and services to members.

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Models of Disability

Discover more about the Social Model vs the Medical Models of Disability of Friedreichs Ataxia

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Research

AFI are involved in research and possibly conducting clinical trials in Ireland in partnership with FARA Ireland.

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