Re: Ataxia Ireland Closure
11th of May 2018
It is with some sorrow to hear that the Board of Ataxia Ireland had to take this difficult, brave but necessary decision to close Ataxia Ireland CLG.
AFI are not taking over Ataxia Ireland, they close and we pick up from there, however there will be a transitional period to facilitate members who may not be aware of this situation, the board of Ataxia Ireland & AFI want to provide members with continuity of support and services for everyone concerned.
AFI is run and managed “by members for members”, we look forward to providing the support and services you deserve.
Ataxia Foundation Ireland CLG, (AFI) is the National Charity supporting people with Ataxia, we welcome members of Ataxia Ireland. AFI recognise the good work Ataxia Ireland did for many years.
We are writing to members, donors, volunteers and would ask you to help us spread the word to anyone you know who has Ataxia and may not be aware of AFI.
We are holding our first AGM in June, and would ask you to feel free to contact us by calling: 087-361 66 16, or email us at: firstname.lastname@example.org
CEO on behalf of the board
Ataxia Foundation Ireland (AFI)
Ataxia Foundation Ireland (CLG), “AFI” Is a charity founded in 2016 by four people each of whom are living with a type of ataxia “by members for members”.
We have spent the last 16 months developing an organisation founded on the principles of “Autonomy” and “inclusivity”, members running and managing our own charity, we are currently defining our processes and procedures, supporting members, all on a voluntary basis.
We have established an organisation confirming our vision of a charity that knows what the members want, gives us the choice and control over our lives, that disabled people or people with impairments should run and manage their own charitable organisations wherever possible.
We are not government funded, all our resources come from fundraising and contributions.
We acknowledge and appreciate the support and generosity shown to us, which has been huge, people supporting us financially, with their time, attending meetings, volunteering, fundraising, encouraging from the beginning and on an ongoing basis.
We operate without an office and it’s associated costs, our model turns around the ratio of a high percentage of funding going towards the “Office” and associated “overheads” such as travel, conferences, and what’s left going to the support of members.
Part of our srategic plan involves something radical, called “Mutual co-operation” the idea of sharing resources, partnering with other organisations in common areas and saving resources while maximising the benefits to our members.
“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”.
The main aim of the charity is to support people with ataxia. As ataxia sufferers ourselves, the members of the board of AFI are acutely aware of the problems that affect the day to day lives of people with this condition, we feel we are better able to identify and address the problems in the most effective and efficient way possible.
The charity can provide advice and practical assistance in securing respite care, purchasing equipment, advocacy matters, respite, counselling or nursing care from our liaison nurse.
We welcome any person who has Ataxia, their families and friends and encourage you to complete our membership forms, which are available here on our web site, under the “Members Area” tab, or by post on request. Our Liaison Officer is available to talk to anyone who would like to discuss a problem or simply chat to someone who can help.
We particularly would like to encourage those with Ataxia who may not be involved with an organisation for whatever reason to consider speaking to us. We are sensitive to your wishes and feelings and have the experience of Ataxia ourselves and treat everyone with respect and discretion.
“When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives”.
We have created a page on this website called, “The Models of Disability” Please click the link “The Models of Disability” this page is important to us and is at the heart of our organisation. We want to do our bit to change things not just for people with Ataxia but people with other neurological conditions and disabled people in Ireland.
We invite you to explore our website on a regular basis as we constantly update it and add content. We are always available by phone or email. Please feel free to contact us at any time.
CEO & on behalf of our Executive Board
Ataxia Foundation Ireland a company Limited by Guarantee (CLG) Company Registration: 588973 Registered Charity Number (RCN) 20153540 Copyright (c) 2018 all rights reserved.