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Welcome to our new charity, Ataxia Foundation Ireland (CLG) a Company Limited by Guarantee. 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, who were volunteers for many years.

We have established our Management Committee, made up of members and volunteers, most of who have supported members or 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 the majority of the board have an ataxia, it is important to us that we should take on these roles, “The Lived Experience of Disability”, No-non disabled person could have any idea what it is like to live with a disability, even with the best of intentions, only a person who lives this experience could understand the challenges disabled people wake up to every morning many of which are obstacles created by poor design of transport and architecture, lack of consideration by planners, unnecessary obstacles, put there by people with lack of foresight.

“In the past we have made assumptions about disability, that it’s the Impairment that causes the problem for the person, Disability is not a health issue but much more a social and political issue”.
Susan Carton,
Lecturer / Programme Director BA (Disability Equality Studies) & BA (Health and Disability Studies) Department of Nursing, Health Sciences and Disability Studies, St Angela’s College, Sligo.

This model goes against an established “System” where CEO’s are not disabled or don’t have the condition they are representing, in many cases leads to some of the scandals in the charity sector.

However we have many non-disabled people who support us, volunteers, carers, p/a’s, family and friends and we appreciate their support. We feel strongly that the time has come for us, people with disabilities to have some autonomy. It is time for us to take some control of our futures, independence has been defined as: Choice, Control & Power, even with a devastating disability like Ataxia, we can do a lot for ourselves, “By members for members”.

“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
CEO & Executive Board

6 days ago

Ataxia Foundation Ireland

The 2019 Kodaline charity calendars are now on sale for HTT Ireland and Ciara Lawlor Memorial. They are sold via Etsy/ storenvy or email orders to Kodaline Fan Base for shipping costs. If paying via PayPal, if friends/family option is selected the charities benefit more.

Ciara Lawlor memorial is donating to Ataxia Foundation Ireland www.AFI.ie

For more information please see:-
https://www.kodaliners.com/kodalinecharity.html
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1 week ago

Ataxia Foundation Ireland

Link: https://dcusnhs.eu.qualtrics.com/jfe/form/SV_9QyRckuu3iZMHtP

Hello there, this morning we had a request from Aoife McNicholl and we are making a shout out across the nation to help her get the info she needs.
“As part of my masters programme, I am conducting research on the impact of assistive technology (AT) use in higher education in Ireland. I am looking at the effect of any type of AT such as mobility aids, visual aids, hearing aids, reading/writing/studying aids etc. The study is an online survey which can be accessed on this link.
Are you a student with a disability in higher education in Ireland who uses or could benefit from assistive technology? A research team in DCU is interested in hearing from you. Take the online survey”

More details:
You are invited to participate in a research study entitled 'ENABLE: Educational eNgagement, Assistive technologies, well-Being and quality of Life of students with disabilities in higher Education. The study is being conducted by myself Aoife McNicholl, a research student in Dublin City University (DCU), Professor Pamela Gallagher (Professor of Psychology, DCU) and Dr. Deirdre Desmond (Senior Lecturer in Psychology, Maynooth University). The study has received ethical approval from the DCU Research Ethics Committee.
The overall aim of this study is to examine the experience and effects of assistive technology use among students with disabilities in higher education. Assistive technology can be described as any device which enables individuals to complete or engage with tasks more easily. Participation will involve completing an online survey which will take approximately 30 minutes to complete. You are eligible to participate in this research if you are aged 18 years or older, have a disability, use or could potentially benefit from assistive technology and are a current student in a higher education institution in Ireland.

If you wish to take part or would like more information, you can access the plain language statement and the survey through the link
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