An tOrd Gnó - Order of Business
Seanad Éireann — 2026-05-26
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Manus Boyle (FG), Nominated by the Taoiseach

I thank Seamy McDermott and Vinney Gillespie who are undertaking a cycle from Malin Head to Mizen Head. It is a more than 1,000 km challenge to raise money for the Irish Kidney Association, a cause close to both men’s hearts. I wish them the best of luck and hopefully the good weather stays with them.
I turn to a more serious issue that I and Senators across parties have raised here many times. It is givinostat for children with Duchenne muscular dystrophy, DMD. I was proud to stand with the people on the Diamond in Donegal. So many turned out on Sunday to support Aaron Langan. It was organised in four days and thousands of people turned out to support Aaron and the Langan family. It was a great event to be at. I give a big thanks to Onóir, the MC Noel Cunningham and all involved for their tremendous work in highlighting this serious issue. It is sad that families have to wait so long for this drug. At a meeting of the health committee last year, I was told it would be sorted before Christmas. Then I was told it would be sorted early in the new year. It is almost June now. This is unacceptable. We need to get this sorted as soon as possible for the children of Ireland. I understand the HSE received a proposal on 8 May from the company that supplies givinostat. Surely the HSE can put a plan in place to get givinostat for Aaron and these other children as soon as possible. The drug is available in England and Northern Ireland and is working well. It slows down the muscle loss. Would the people making this decision on givinostat take so long if it were their son or daughter? Time is muscle. I ask the Acting Leader, the Department and everybody to get behind this campaign. We need to support Aaron and the children of Ireland who have this disability. We have to get this sorted. They are depending on us as politicians to get this over the line. For Aaron and all the other people, we need to get this sorted as soon as possible.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-05-26/debate/main
Retrieved: 2026-08-14T04:54:59+00:00
Sitting date: 2026-05-26