Friedreich’s Ataxia Research Alliance Ireland (FARA Ireland)
FARA Ireland is a non-profit, non-governmental, Irish organisation representing people with Friedreich’s Ataxia. It was initiated by parents whose children have Friedreich’s Ataxia. to contribute to funding research into Friedreich’s Ataxia from Ireland.
FARA Ireland aims to help find a cure for Friedreich’s Ataxia (FA) by:
1) Raising funds for research
2) Maintaining its strong connections with the global FA research community and
3) Advocacy work – currently, focused on getting drugs which are approved globally for FA, to become approved and funded in Ireland for those with FA.
What we have achieved to date – 2023
We are only a small organization with 10 members. Since 2011 we have had many successful fundraisers and have co-funded international research to the value of €210,000.
From 2011, FARA Ireland was committed to getting Irish people on the FARA in USA patient registry. In 2012, we had proportionately more people from Ireland on the FARA registry than any other country in the world. Unfortunately that registry is not active.
Contribution to Guidelines on Friedreich’s Ataxia:
One of our founding members, Mary Kearney is medically doctor. She was the led author on a Cochrane review ‘Pharmacological treatment in Friedreich ataxia’. In addition, she made a significant contribution to the Consensus Management. guidelines on Friedreich’s Ataxia including the most recent edition in 2022 www.curefa.org) which has had global input.
Representing those with Ataxia at the European Reference Network for Rare Neurological Diseases:
Since its inception in 2016, FARA Ireland’s secretary, Mary Kearney is patient advocate at the European Reference Network (ERN) for Rare Neurological Diseases (RND). She has been a regular contributor at the disease specific Ataxia and Hereditary Spastic Paraplegia meeting and management meetings of ERN-RND. She was lead author on several patient information leaflets on ataxia for ERN-RND. She presented a poster at the International Ataxia research Conference (IARC) on what the ERN-RND can do for ataxia in 2019. During the COVID pandemic, she worked on producing a ‘Patient Journey’ for Friedreich’s Ataxia and presented it at the 2022 IARC in Dallas.
Chairperson: Dr Patricia Carmody, Fairview strand, D3.
Secretary: Dr Mary Kearney, Dunlavin, Co. Wicklow.
Treasurer: Maria Walshe, 17 Raphoe road, D12.
Revenue No.: 19763
Registered Charity No.: 20077396
Registered address: Boherboy, Dunlavin, Co Wicklow W91 N4X9