Drugs for muscular dystrophy and ataxia
After further gallery welcomes, Senator Clonan congratulated Senator Costello on securing approval for givinostat for Duchenne's muscular dystrophy and urged similar action on Skyclarys for Friedreich's ataxia. The point was framed as a call for access to effective treatments for patients.
Before I call on the next Senator, I welcome from Derry and Belfast members of the Identity Project, who are guests of Deputy Mary Lou McDonald. You are most welcome to Seanad Éireann. I welcome also a guest of Senator Cathal Byrne who is in the Gallery, Paul Sinnott from Ballagh, which has an excellent hurling team, Oulart-The Ballagh, in Wexford. You are most welcome to Seanad Éireann as well.
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I want to bring up two issues. One is about the agricultural shows we are seeing now across our counties. I would like to say a big thank you to the Department of rural and community affairs for the money that is provided to these shows. I think approximately €1 million is dished out to about 126 different agricultural shows around the country, and they get between €4,200 and €11,400 each. I was at Ballivor Horse Show at the weekend. It was my second year going to it. I went to it last year as well. It really is value for money. These agricultural shows are really important in these rural communities. It was absolutely packed. I entered my two dogs into the dog show. They did not win or even get the waggy tail prize. It was very disappointing. Seriously, though, the shows are brilliant. I am heading to Trim Haymaking Festival next weekend as well. I know there is €1 million distributed annually but there can always be room for more, especially for these shows that are so important to rural communities. I congratulate everybody involved in the Ballivor show. It went on for two days. I wish the best of luck to the people in the Trim haymaking show this weekend.
The second issue I want to mention is the housing infrastructure investment fund for my county. I think every county got massive news today, but in Meath, we got five projects over the line, to the value of about €70 million. Together, all the projects will directly unlock capacity for about 2,275 homes and indirectly support a further 2,705, so roughly 4,980 homes in total. There is an €862 million budget nationally, and it is fantastic to see this. The infrastructure is needed there when it comes to water, the ESB and everything that surrounds helping to get these houses built and to unlock the lands and the surrounding areas by building bridges and whatever else needs to be done. I very much welcome this. Today is a very positive day for all the counties.
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In the spirit of collegiality, I also commend the iarCheannaire on his leadership here in the House. Although we crossed swords from time to time-----
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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.