Andrew Doyle (Wicklow, Fine Gael)

I wish to share two minutes of my time with Deputy Joe McHugh. The need for funding for muscular dystrophy has been brought to my attention by a family who have two young sons, aged four and seven, with Duchenne muscular dystrophy. After my initial contact with the family, all Oireachtas Members attended an information session on 9 April given by the representative association, Muscular Dystrophy Ireland, MDI, where all Members expressed support for and empathy with the families of the sufferers of this dreadful disease. Prior to this meeting I had written to and received a response from Deputy Jimmy Devins, then the Minister of State with responsibility for disability and mental health. The Minister of State said, "It was very positive that Muscular Dystrophy Ireland has secured access for Irish children to the Duchenne muscular dystrophy registry in the UK, so that they can be considered for inclusion in the first systemic trial of this treatment." However, the Minister of State went on to say there was no mechanism or budget for the Irish Government to fund UK health research, and recommended the matter be taken up by the Health Research Board, HRB. He suggested that Muscular Dystrophy Ireland applied for joint funding but he admitted the organisation would have to compete with all other proposals and requests put for funding. MDI made contact with the HRB, only to be told this year's funding was committed. It received €50,000 through another channel within the HRB but it falls far short of the €1.5 million required.

My aim in proposing this enabling legislation is to allow funding to cover research trials that are not taking place or available in Ireland for sufferers of such illnesses as muscular dystrophy. The reasons the research does not take place may vary but inevitably it is because there are not enough people in the core group of sufferers, some 150 families, in this country to justify it. Time is not on the side of these people. We can directly fund operations in Great Ormond Street Hospital or in America and, given there was cross-party agreement on this issue, I ask that this funding be put in place.

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