About Us

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 6616 or email info@afi.ie and we will send them to you.

1 week ago

Ataxia Foundation Ireland

#PASNOW
What WE in the Independent Living Movement Ireland (ILMI) want for our Personal Assistance Service!

• Define: A universal accepted definition of the Personal Assistance Service, which places us at the centre of any service provided and is directed by us to meet our needs to live independent lives. The PAS is about providing us with the necessary supports, both inside and outside of our homes to enable us to live a life of choice, dignity and respect. The Personal Assistance Service needs to be separated from Home Help and Home Care with its own ring-fenced budget.

• Legislate: Introduce legislation to guarantee us the right to a Personal Assistance Service as per Article 19 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

• Invest: Increase the budget for Personal Assistance Services by €12.5 million annually to provide an additional 500,000 hours each year to enable us to lead real independent lives.

• Standardise: Introduce a single standard assessment of need across all HSE CHO areas. This must include the provision and support for independent assessment of need as per the Disability Act 2005 and the creation of systems that allow for portability of services across CHO areas, meeting our social, personal and employment needs with no bureaucratic barriers.

• Promote: Ensure that we are all made aware of the availability of the Personal Assistance Service in order that those who wish to lead to live their lives independently can access the necessary supports to do so.

Effective campaigns are strategic. They focus on specific goals and get everyone to relay the same message across the political spectrum. Our first strategic campaign is to bring about change in the resourcing and delivery of the Personal Assistance Service. We have held workshops on activism in Ennis, Leitrim, Dublin, Donegal, Cork and Galway so that disabled people can bring a consistent strategic message to their politicians and make them understand what we want from our Personal Assistance Service.

#Budget2019 has announced an additional €150 million for disability services. How that will be spent will be based on the HSE developing their service plan for 2019 in the next few weeks for Ministerial Approval.

Collectively, we need to have our voice heard. If we don’t lobby to ensure that this increase spend makes a real difference in disabled people’s lives, we can be certain that other groups will lobby for other services that will not promote inclusion of disabled people in society. If we don’t want that to happen, we need to act. We need as many people as possible to become active agents of change to build a more just, inclusive Ireland.

Now do YOU want to get involved? Contact us on info@ilmi.ie
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