Image of Research


AFI are involved in research, attending research conferences and contributing to research. We are working closely with FARA Ireland and Biogen in trying to ensure the drug Skyclarys is available to people with Friedreich's Ataxia in Ireland. 

The "I am Seventeen " campaign launched on February 6th 2024 highlighting how many people in Ireland live with a rare disease. That is one person on every football team.



A Note from Dr. Kearney
I have received my login and becoming familiar with the EFACTS programme. Even though I have only recently become a  research fellow at Tallaght University Hospital (TUH), I am quite familiar with the EFACTS programme which was set up in 2011/12 through personal experience. I was secretary of the European patient group Euro-ataxia just after the turn of the century.

As you will know, approximately 20 Irish people who have Friedreich’s Ataxia (FA) were enrolled, initially, in 2012 in EFACTS centre in University College London (UCL) where Dr P Guinti and Dr Michael Parkinson take the lead. They travelled to London on one occasion and the Neurology team at UCL subsequently came to Tallaght, Dublin until 2006.


Many of these patients have now approached me and want to have their EFACTS details transferred to  Dublin. They have given me written consent and Prof Sinead Murphy & Prof Richard Walsh, Tallaght Hospital are happy to have these people with FA included in their EFACTS programme.


How can these people have their records transferred to the Dublin site? Already, some of these people have given written consent to me for this transfer, who would I send these forms to?  These people are not prepared to travel to London at this time for many reasons including expense and COVID virus and given that they have not been seen for over 5 years, it seems unlikely that the team from UCL will travel to Tallaght, Dublin.


I look forward to hearing from you as we in TUH are keen to facilitate the needs of Irish people with FA



Mary Kearney Research Fellow at Tallaght University Hospital,

Tallaght, Dublin 24, D24 NR0A.

Registered Charity Number 20001605 Revenue Charity No. CHY 982


Donate to help our services

At Ataxia Foundation Ireland, security and data protection is important. Your details are encrypted on our site. We invite you to read our privacy statement, to see how we protect your data online.

First Name is required Last Name is required
Email Address is required Phone Number is required

Billing Address is required City / County is required Eircode / Postcode is required Country is required Business Name is required Donation Total € is required Antispam Code Cannot read this code: Change
Please enter the anti-spam code you see here to send your form. This is to prove you are not an automated service and to protect our website form spam and abuse

You will automatically receive a receipt by email for this transaction. Please indicate if you also wish to receive a copy by post

I would like to hear how my donation is helping Neuroataxia CLG T/A Ataxia Foundation Ireland by

We, Neuroataxia CLG T/A Ataxia Foundation Ireland, will not share your personal information with any third parties. All donor data is stored securly using SSL certificate data protection. See our privacy statement.

We, at Neuroataxia CLG T/A Ataxia Foundation Ireland, do not store or even receive your credit card information. All payments are securely processed by See their privacy policy.

There are some fields on your form that are required, please complete these fields to continue


All rights reserved © 2024 | Web development by KL Studios


By using this website, you consent to the use of essential cookies in accordance with our cookie policy.