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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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 50 other Ataxia’s. Friedreichs ataxia is a rare condition and so is the charity, which provides its services on a voluntary basis vital support to its members and increasing them as we  go.

 

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.

 

 

 

 

Media Library - Social Gathering 2

 

 Fredreich Ataxia is the most common genetic Ataxia. There are over 200 different Ataxias.  Ataxia a rare condition affecting the nervous  system, we see it 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 has FA 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.

 

AFI is a small charity and Ataxia is a very rare condition, Ataxia is not a nice one and we have to be sensitive to our members, the fact that we are members it is easier to say it as it is, about the way people can be affected by Ataxia.  We know what members are going through no two cases are the same, it varies from what stage in life onset happens, because no one is aware that they have the condition until onset happens.  We don’t want to upset members in order to increase donations, while we don’t want to play it down too much at the cost of limiting donations and awareness either, we give credit to our members and families who are living the “lived experience” and are well aware of the symptoms of Ataxia and variations of it.

 

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.

 

 

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