Image of Voluntary Committee

Voluntary Committee



Our organisation was founded by four people with Ataxia, who formed the board of Directors and Trustees and has since increased the board to seven Trustees, five with an Ataxia and two, non-disabled people. The Board of AFI will always have the majority of Trustees with Ataxia, the reason for this is that it brings the wishes, voices and influence of the members into the boardroom and the ethos of “by members for members”. The only charity we know of with this structure.

The current structure of the Board of AFI is the Chairperson: John Kelleher, Company Secretary: David Power, Treasurer: Rita McDermott,  Ken Caulfield,  Rachel Byrne, Anita Gracey (NI), Kiara Lynch Owens.


The Voluntary Committee is made up of subgroups of volunteers who meet up once a month with the board.


Ataxia Support Team (AST) Nora Young Brenda O’Hara, Maureen Sweeney, Rachel Byrne and Tom Kelleher,

The Ataxia Support team is in place to provide support and assistance to all our members. We help in a practical way. Firstly, and most importantly, we are a listening ear, giving people a safe space to talk, whether it is a newly diagnosed member trying to come to terms with the diagnosis, or a partner, sibling and parent of someone newly diagnosed.  We are here to listen regardless of what stage of their ataxia journey they are on.


We provide the following support –

Help with appointments in particular with the Ataxia Clinic, Tallaght University Hospital for initial consultations and followup appointments.


We connect with services within the HSE including Community Care Nurses, Speech and Language Therapists, Occupational Therapists and Physiotherapists.


Direction towards entitlements such as Disability Allowance, Travel passes, Home Improvement grants, Respite grants, Domicilary Allowance, House Adaptations, Providing the proper channel / direction to help members with their applications.


Sean O’Hara, Willie Barrett, Teresa Kane, Laura Brady, Jessi O'Reilly and David Power are building a network of members to reach out and gather feedback, discuss at management level then target support to where it’s needed.


CEO Retires


It saddens me to say that Al Young as Chief Executive Officer of Ataxia Foundation Ireland, made a formal announcement at July’s AFI AGM 2023, that he is stepping down from the role on medical grounds.

Al had a massive undertaking as founder and interim CEO of AFI, and has worked tirelessly, taking the organisation from strength to strength. Undoubtedly AFI would not exist without his vision and dedication. Al is fearless and meets all challenges head-on.

Al has not just been a desk-based worker, on a personal note, he has shown care for the individual members.  Al’s good humor, optimism, and warmth to all is legendary.

Al and his wife Nora have allowed their home to be used as the AFI office, meaning a financial saving for AFI, and displaying great generosity of spirit.


It has truly been an honor to work with Al. We wish Al the best of luck in the future.


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