Rachel Byrne
Founding Trustee
Growing up I was a ‘normal’ child I live in Balbriggan in North Dublin. I am now 36 years old and live independent to my family. I have a younger brother and two older sisters. At 17 me and my oldest sister were diagnosed with a condition called Ataxia Telangiectasia. In 2012 I started using a walking frame to help get around and in 2014 I realised it was safer to use a wheelchair. Now using a wheelchair, I have more energy and do more than ever.
“When I was asked to be involved with Ataxia Foundation Ireland I said YES straight away. To know that this foundation is all for the members makes me so happy, all I have ever wanted to do is let other people with Ataxia know its not the end of the world and with this organisation I hope people realize that you can have a good and easy life even with a disability like Ataxia”.
Me, personally I don’t use the word disability much because a lot of people think disability means you cant do something but I don’t believe that if you want to do something bad enough you will”.
That’s the message I want to tell all the members. It feels strange calling them members because they are not just members, over the years of meeting people with Ataxia we have all become a family. A big family who are there for you whenever you may need them.
Anita Gracey
Trustee
It is crucial that the majority of Board Members have a lived experience of Ataxia. Anita, three of her siblings and one second cousin have Friedreich Ataxia – so she has personal experience from different generations.
Anita was employed as a mentor for disabled people, working towards goals in supported living. Anita was employed freelance as a Disability Equality Trainer. From her wealth of experience, she is focused on the individual member. Anita’s approach is grassroots influenced. Since 2019 Anita volunteers with the Service User Engagement Group in the Reform of Adult Social Care within the Department of Health, highlighting issues to a wider decision-making on a Northern Ireland basis.
Anita has been an AFI member since its conception and joined the Board in 2019. Anita role within the Board is maintaining that members voices be heard. AFI mantra is ‘by the members for members’ and this a philosophy which she heavily endorses.
Pre-Covid she would have invited members to her home for lunch. And has also been to their homes. Anita finds this is the best way to promote independent living, tailored to the individual. Anita maintains contact with members via telephone, text and email throughout lockdown. Anita has attended members events via zoom and encouraged others to join-in. Anita has encouraged members to contribute articles to the newsletter. Anita has also taken part in AFI fundraising events and her family have fundraised significant amounts.
“When I was younger, disabled people weren’t seen, diminutive to wider society, but legislation and attitudes are changing - our voices have become louder! I want AFI to be an active part of this shift. I would see myself as identifying members to become empowered. Having higher profile roles within society, we can influence future generations. It’s a case of ‘well he/ she can do it, why I can’t I’? We need role models.”
Colm Logue
Trustee - Secretary
Colm Logue joined Ataxia Foundation Ireland as a Director and Trustee in 2024 and serves as the Company Secretary. While he does not have ataxia himself, Colm has a deep personal connection to the condition, as his late brother, Ciarán, had Friedreich’s Ataxia. His firsthand experience of the challenges faced by individuals with ataxia and their families has fuelled his dedication to supporting our community.
With many years of volunteering with ataxia groups, Colm has builtstrong friendships and remains committed to making a positive impact through his work with Ataxia Foundation Ireland.
Dan McInerney
Trustee - Treasurer
My name is Dan McInerney. I have been a member of Ataxia Foundation Ireland for the last few years and was delighted to be approached to consider becoming a trustee in early 2024. I commenced my role in September 2024.
I have a form of an Inherited Cerebellar Ataxia which impacts my balance and walking. I also have a moderate sensory hearing loss related to the condition. I see AFI as a charity represented by a small closely-knit group of people who strive to look after everyone who accesses the services of the charity. I believe it will grow further through the increasing numbers of people with an Ataxia, of which there are more than 200 types currently with more being discovered through advances in medical testing.
I have an accounting qualification, and I hope I can provide some of that experience in the areas of financial reporting and controls along with contributing to improving governance. I would like to see further development of the charity where it provides an increasing range of information, supports and services to all members. The charity already provides a lot of services directly to its members through the dedicated work of the existing Board and Volunteers, and I will strive to help AFI operate in an effective and transparent manner with inputs and involvements from as many members as possible and to build on the work already done by its Founders and previous Boards of Management.
Adrian McBreen
Trustee
I have an Acquired Ataxia following viral encephalitis that struck ‘out of the blue’ in 1995. After intense physio and more, I arrived on a plateau two years later; I’ve been enjoying the view from there ever since. My connection to the world of ataxia really began some 15 years later, because the idea of being labelled as a person with a disability in those years was a real fear for me.
Then I went to social events here and in the UK, as a long overdue introduction to my old/new reality. It was honestly one of the best things I’ve ever done, there were actual people like me in the world. I’m naturally drawn to the positives in life, so all of my closest friends from the ataxia community have no victim mentality. It’s too easy to fall (pun intended) into that trap. It is possible to live with an ataxia and be optimistic, and I feel like being a trustee with Ataxia Foundation Ireland is a chance to share that attitude. Ataxia is a very broad church; AFI welcomes everyone, regardless of ability, and if I can reflect our diverse community of all abilities, then so be it!
Hubert Henry
Trustee
Hugh is a recongised expert in Innovation strategy development and Environmental Control issues. He assists companies/organisations to develop and pursue a formalised innovation Strategy agenda often involving change management, business/strategy transformation, staff behavioural alterations, ideas sourcing, IP protection and other general management issues associated with this journey. It is a topic which he is passionate about and one which he has gained a great deal of experience in over the years. He also helps clients address all issues relating to environmental controls in businesses including air and water pollution control, waste management, sustainability management, energy conservation, sustainability opportunities in business, ESG reporting, carbon footprint calculation and management, planning/licensing lodgements and appeals.
Dr Henry is a former Irish ‘expert’ representative of a European Working Group on the development of a harmonised standard for the small-scale Wastewater Treatment system sector and an active member of the Irish wastewater competence centre established by leading industries in the sector with the assistance of Enterprise Ireland. He was also a member of the NSAI mirror group advising on the development of European and international innovation management standards. He is a previous member of the Irish industry and business innovation management group at IBEC (Irish Business and Employers Confederation) and an IRDG (Industry Research and Development Group) board member, plus he has lectured widely, and has been a keynote speaker at many conferences on this topic (innovation strategy in sustainable business).
Dr Susan Finnerty
Trustee
Dr Susan Finnerty qualified as a doctor from University of Galway and worked as a consultant psychiatrist in the Clare Mental Health Services in for 14 years. In 2004, she joined the Mental Health Commission, initially as Assistant Inspector and then as Inspector of Mental Health Services until her retirement in 2023. During her time with the Commission, Susan completed numerous reports on the Mental Health Services, including Child and Adolescent Mental Health Services (CAMHS), Mental Health Services for Older People and Mental Illness in the Prison Services, as well as statutory and non-statutory inquiries. She also has a Masters degree in Health Ethics and Law from the Royal College of Surgeons (RCSI). Her own journey with Ataxia began in 2020 as a late onset condition which she shares with other family members. Susan has a special interest in recent developments in treatments for Ataxia and in raising public and government awareness of Ataxia.
