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