Friedreichs Ataxia is a genetic and progressive disorder of the central nervous system which usually manifests itself in children between the ages of six and sixteen years. Because of the genetic factor young parents could have several children before the condition manifests itself in one or more of the children. The general symptoms are clumsiness, difficulties with balance, lack of co-ordination and, in time, a slurring of speech. Please click the link “About Friedreich’s Ataxia”
Four people who have Friedreich’s Ataxia have established a new charity “Ataxia Foundation Ireland” a Company Limited by Guarantee (CLG) and these four members are directors and trustees of the company.
It became very apparent that a new organisation was required, one that had to come from the people who have Ataxia themselves, not for the purpose of replacing an existing organisation but to provide services that were not already being provided and from the perspective of a person with Ataxia, someone who has lived with the condition and could help someone come to terms with a recent diagnosis.
When we established Ataxia Foundation Ireland (AFI), we structured the organisation itself and management in such a way, it was in line with the charity regulators guidelines and sets the scene or standard for future CEO’s which will be up for election in March 2018, it protects everyone without compromising the CEO’s ability to function as a manager, leader, driver and visionary of AFI’s strategies and goals as a charity.
We have established a strong team of volunteers comprising of the Board and Trustees, CEO, Management Committee and Member Support Team (MST) providing support to members.
The MST consists of Administrator’s, Liaison Officer (Nurse), Information & Communications Officer, all have years of experience working with Ataxia and generously offered to help.
We have gone beyond the standard recommendations of the code of governance, transparency and have also engaged the services of an Accountancy, Auditor firm and Solicitor, we are committed to providing our accounts and other relevant information on our website where the public can see where their donations are going.
We intend to become involved in disability issues, Ataxia knows no borders and effects most parts of the body while the intellect is unaffected, with the nature of Friedreichs Ataxia, we experience many different effects and types of disabilities over time, not just one, it is a degenerative condition.
We have provided membership forms for 1. Members, 2. Family of People with Ataxia and 3. Friends of AFI/Volunteers. Membership does not imply that you cannot be a member of any other organisation, we would encourage you to download the forms available for download, return the completed and signed form to AFI and please share as much as possible with your friends with ataxia and or people who would also be interested in being part of AFI.
We welcome donations and anyone willing to participate in fundraising, we have created a Fundraising Pack and Application forms are available, please call 087-361 66 16 or email firstname.lastname@example.org and we will send them to you.
Ataxia Foundation Ireland a company Limited by Guarantee (CLG) Company Registration: 588973 Registered Charity Number (RCN) 20153540
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