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loved ones." Those are the words of Emily Felix, a 28-year-old trainee solicitor from Kilkenny who is living with Friedreich's ataxia. It is a rare, progressive and life-limiting neurological condition. It gradually takes away mobility, speech and independence. Emily was diagnosed at 12. Since … Taoiseach knows, the HSE drugs group met to consider reimbursement of Skyclarys, the first approved treatment that can slow the progression of Friedreich's ataxia. Patients hoped for a positive decision. This process has been ongoing for years. Instead, the drug was referred to a rare disease technical

meet with her before she leaves Dublin. People in wheelchairs gathered outside Leinster House on Tuesday. They are people living with Friedreich's ataxia. This is a progressive degenerative neurological disease. They were here at the Dáil because they have been waiting two years for access to Skyclarys … robs people of their ability to stand, walk and swallow. It can rob them of their sight and their speech. When Friedreich's ataxia strikes a person's body, it invades every facet of them. Time just changes for a person. Time moves far more quickly, and time

want to read an excerpt from an email I got today in relation to Skyclarys for people with Friedreich's ataxia: At 19 years old, I should be excited about my future. I should be looking forward to building a career, travelling, making memories with friends and planning … overshadowed by fear, knowing that my condition will continue to deteriorate while a treatment exists that could slow the decline. The Friedreich's ataxia community in Ireland has been fighting for reimbursement of Skyclarys for a long time. We have shared our stories, met with politicians, engaged with

clear, it is not that all of this is frustrating for those living with Friedreich's ataxia; it is actually terrifying for them. I met Emily three or four weeks ago and I was speaking to her again on Tuesday. Even in that short time span, she told

Imagine being the father of two boys who have Friedreich's ataxia and one of them passing away. I know the Tánaiste is familiar with the case of Craig Coady. I normally do not personalise stories in here but he spoke about this quite openly

approve it based on scientific grounds, there is an extra opportunity for those clinicians who are actively working with patients with Friedreich’s ataxia or the relevant rare disease to have their say, to make their case and give the best explanation of how they think it might

thank Deputy Cullinane for raising this issue. I accept this is a matter of urgency for those with the condition of Friedreich's ataxia. I have met with Craig Coady and with others who have the condition. It is extremely worrying for them to say the least

Yesterday evening, I met a group of individuals who have Friedreich’s ataxia and their families here in Leinster House. They are calling for urgent access to Skyclarys, the life-changing drug for those living with this rare, degenerative neurological condition. I offered them my full support

that it proved challenging. We are not scientists, but we all feel for the families. We understand. We have met people with Friedreich's ataxia. They cannot get this drug fast enough. For all drug approvals unfortunately, there are processes which, unfortunately, have to be gone through

just 26 years of age and is now confined to a wheelchair. Her family knows all too well the reality of Friedreich's ataxia because Emma's brother died from this disease. Last night when Emma got back to west Cork and learned there would be yet another

Emma O'Shea and others living with Friedreich's ataxia are in the Public Gallery and outside the gates of Leinster House for a peaceful protest. Can we have a debate on the current status of Skyclarys reimbursement and will these sufferers have positive news

People living with Friedreich's ataxia are once again outside the gates of the Dáil. They are, as the Taoiseach knows, waiting and waiting for confirmation that they will have access to Skyclarys, a drug that has the potential to be life-transforming for them. In the absence

think all of us have met with families and young people who have Friedreich's ataxia as a condition and who are eagerly awaiting the outcome of the drug approval process, and there is a process. It is science led, primarily. It is not politically led, primarily

month ago, a group of people living with Friedreich's ataxia, along with their families, were present in the Dáil as the urgently needed drug Skyclarys was being discussed on Leaders' Questions. It is important to acknowledge the hurt the Taoiseach caused that day when he gave incorrect

approach this. My only objective, like most Deputies on this side of the House, is to help those who have Friedreich's ataxia. That is all. I do not try to score political points with other people on issues as serious as this. I have to say that

issue that has rightly got a lot of coverage over the last few months is the disease called Friedreich's ataxia. There is a drug out there called Skyclarys. Citizens of a number of European countries are able to access that medicine. We have come here and families

existing drugs budget in this country. The Leas-Cheann Comhairle and the Minister of State will know that we are working with Friedreich’s ataxia patients who are undergoing a similar process regarding reimbursement of the drug Skyclarys, which, I understand, will be deal with by the drugs

States and a few other countries internationally. When are we going to step up to the plate with drugs like Skyclarys for Friedreich's ataxia patients? I know the Minister of State has constituents of her own and it is close to her heart

Deputy for this. I will talk about my own constituency. I have met with a lot of families in Carlow affected by Friedreich's ataxia, particularly Emily and Oisín. As the Deputy said, it is important. The next HSE drugs group is meeting on Tuesday, 14 July

asked the Minister for Health if she will provide an update on the HSE's consideration of Skyclarys for the treatment of Friedreich's ataxia; the reason the drug was not included on the agenda of the HSE Drugs Group meeting of 14 July 2026; if she will