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Trustees

Rachel Byrne

Founding Trustee

Media Library - Member - Rachel Byrne

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.

 

Ken Caufield

Trustee

 

 

Media Library - Ken TrusteeI joined AFI as a Trustee for many reasons but mainly to be involved in overseeing that AFI continues to prioritise members as well as being a member myself. I would love nothing more than to see the quality of life of all our members improve immensely.  I have made a huge number of friends in the Ataxia community over the last 17 years and to add to my experience I have worked in the Disability sector for 15 years ongoing.  I have a huge interest in research towards a cure and in 2019 took part in a neurological research project. I am a member doing this for members in line with AFI’s slogan.

 

 

Anita Gracey

Trustee

Media Library - Member - Anita GraceyIt 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.”

 

David Hanly

Founding Trustee RIP

Hi I am David Hanly and I am 29 years old. I live in County Laois, just outside Carlow town. I was diagnosed with Freidreichs Ataxia when I was seven years old. I attended primary and secondary school in Carlow where I made many friends. After school I studied computer science and accounting briefly at Carlow IT but found I lacked an aptitude for either of these subjects. I then went to Saint Patrick’s college in Carlow and studied Humanities through their Access programme and after five years I received an honours degree in Humanities from there. I really enjoyed my time in college and received amazing support and assistance. I am a full time wheelchair user since 2006. I have travelled to New Zealand to Los Angeles and to France several times and to the UK.

 

“I am delighted to be part of Ataxia Foundation Ireland and hope to be able to deliver support and assistance to people who have Ataxia and need help to live fuller lives”.

 

It was with deep sorrow, we lost David at such a young age, David was full of life and wanted things one right”.
19-08-1988 – 03-01-2019 R.I.P

 

John Kelleher

Trustee -Chairperson

Media Library - Member - John KelleherHello my name is John Kelleher and I am 43 years old. I was diagnosed in 1998 with Friedreich’s Ataxia. I was walking, running and playing sports at the time. I was in hospital for an unrelated operation when diligent doctors noticed I walked with a very wide gait. I didn’t notice anything strange. At the time I was told I would end up in a wheelchair and that there was no cure or treatment. I thought I might be 50 or 60 getting a wheelchair. I was 28 when I got my first wheelchair. Up until 23 I played golf. Now I use a wheelchair full time. My life has changed yes but I work (as an IT Developer), socialise, travel, have my hobbies and I am independent. I have travel led around the world Iceland, Australia, USA and the UAE. I am very lucky to have great family and friends whom have helped me out when needs be. Slowly my abilities are lessening such as getting around, getting dressed are becoming slower. I have a recumbent trike and I do some physio work to slow down FA as much as I can. The recumbent trike helps a lot in my opinion. In 1998 there was no treatment no cure now there still isn’t but there is a lot of promise.

 

“I want to share my experiences to help others with Ataxia’s, via Ataxia Foundation Ireland I can do this”.

 

 

Rita McDermott

 Trustee -Treasurer

Media Library - bookkeeperMy name is Ria McDermott, I became a Director/Trustee of Ataxia Foundation Ireland in June 2018. My current role within the organisation is Treasurer. I have a wealth of experience as an Accounting Technician / bookkeeper. My skillset suits this role.


Having been involved as a volunteer within other organisations in the past I am delighted to have joined Ataxia Foundation Ireland in the summer of 2017. Since joining AFI I’ve had many enjoyable occasions with members and volunteers alike, our members are truly amazing people.

 

 

 

 

 

 

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