An tOrd Gnó - Order of Business
Seanad Éireann — 2026-06-16
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Tom Clonan (IND), University of Dublin

Not every time. Come on. I think Christmas Eve, no? Anyway, mar a deirtear as Gaeilge, cogann na faoileáin, ach cagann siad ar an gcloch chéanna. I commend the collegiality of this House and, in that spirit, I congratulate Senator Costello from Fianna Fáil on the great work she has done on having givinostat approved as a drug for people suffering from Duchenne's muscular dystrophy. In that same spirit, I ask, please, that similar action be taken in relation to Skyclarys, the drug that supports people with Friedreich's ataxia.
We have 200 young people, and they are mostly young people, in the Republic who are suffering from Friedreich's ataxia, which is a progressive disease that leads to the deterioration of the neurological and muscular systems. As I have said before, the sufferer struggles for breath. It is not an easy disease to deal with. Skyclarys shows great promise in halting the progression of the disease and giving people extended quality of life and life itself. I will mention a former colleague of mine, journalist Niamh Ní Hoireabhaird, who has a piece in the Irish Independent today. She is in the process of having her voice banked because she is losing her voice as a journalist and a recently married lady. She is now using a wheelchair. While she still has a voice, I ask that we listen to her and have Skyclarys approved.
My own family is also experiencing this. My son's voice is being banked. I do not think there is an intervention for him, but when I think of those 200 families where there is an intervention, if there is something we can do together in this House as a collective, I ask that we push for the recognition of Skyclarys.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-06-16/debate/main
Retrieved: 2026-08-14T04:55:03+00:00
Sitting date: 2026-06-16