Welcome to Ataxia Foundation Ireland (AFI), the New Voluntary National Support Group for people affected by Friedreich’s Ataxia (The most common Genetic Ataxia) and up to 50 other Ataxia’s.

The organisation was founded by four people with Ataxia, to form the board of directors and trustees, we have recently increased the board to seven, five with an Ataxia and two, non-disabled people, and have established our Management Committee, made up of members and volunteers, most of who have supported people with Ataxia for many years.

Our aim is to provide support services to people with Ataxia and their families, we have established this organisation which is run and managed by people with this condition, The CEO has (FA), the Chairman has (FA) and most of the board have an ataxia, it is important to us that we should take on these roles.

AFI is based on the “Social model of disability” which says “People with Impairments are disabled by Society” by poor planning, poor transport systems, poor access to employment & education and the continual disregard of their needs.

AFI was formed “by members for members” as an organization that puts its members first and will make a real difference to people’s lives. AFI has received a very positive response to our charity in terms of donations and from people who recognize what AFI are doing, our only interest is the care and support of our members.

To date, no one in AFI gets paid, AFI receives no funding from the HSE, we have no office and have been operating this way for two years and we are totally dependent on donations, and our donors and volunteers who have been so kind to us, without them, we wouldn’t exist.

It is early days yet but the time will come where some people will need to be paid and we will need an office to make things function better, if we were to do that now, our funds wouldn’t last long, so our strategy is to continue as we are until it is in AFI’s best interest to invest in a premises or employment.

We want to wish everyone who have supported us to date, donors, volunteers, other charities, members of the public a huge thank you from the bottom of our hearts.

“When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives”.

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”.

Yours Sincerely,

Albert Young
Founder & CEO

14 hours ago

Ataxia Foundation Ireland

Cuisle update.

I am all too aware of the value and importance of Cuisle to all those who have used the facility. That is why in recent weeks I have been working behind the scenes as part of the Cuisle Alliance – along with Cllrs. Laurence Fallon and Orla Leyden - to find a way forward for Cuisle as a holiday centre.

I am pleased to confirm that we brought together a number of stakeholders to form a working group which will work together to retain services at Cuisle, where possible.

As such, an application has been made to the Divine Word Missionaries for an interim lease for the Cuisle Complex.

The working group now consists of, but is not limited to, representation from the following voluntary, community & business sectors including:

• Roscommon LEADER Partnership
• Irish Heart Foundation
• Vita House
• RSG - Derrane
• Representation from community of Oran
• Constituency TDs (3 in total)
• Roscommon County Councillors (18 in total)
• Representatives from County Roscommon in Seanad
Eireann (5)
• Save Cuisle Campaign
• Legal Representation
• Divine World Missionaries as a representative source

The Purpose of the Cuisle Alliance is to work together to develop an agreed action plan for the future of Cuisle.

The plan is to identify and set up a suitable and appropriate legal entity to manage, coordinate and carry out the daily requirements of Cuisle going forward and to secure an interim 12-month lease from Divine Word Missionaries and to agree a 25-year lease on the basis of the initial 12 month lease being successful.

The aim is to restructure and rebrand Cuisle with the main ethos of facilitating the target group/IWA users but also exploring diversifying to different markets and targets groups, to include delivery of the Hidden Heartlands agenda in a bid to ensure overall and long-term viability.

It is also intended to develop an initial 18-month plan to resolve the existing health & safety issues, create a new 5-year business plan including all potential stakeholders and secure long-term funding to ensure sustainability.

I will continue to work to support this project and I hope that the work of all the stakeholders will see people returning to holiday in Cuisle again in the future.

Save Cuisle Roscommon Herald Roscommon People Shannonside FM RosFM 94.6 Irish Heart Foundation Irish Wheelchair Association Cuisle Holiday Centre Roscommon Ballinasloe Life Magazine Roscommon Town Team
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