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Date set for Dáil Duchenne debate 15.05.09

THE suffering of two Inishowen families living with a rare and fatal condition will be highlighted during a debate in the Dáil next week.
Three young Inishowen boys suffer from Duchenne Muscular Dystrophy - Liam Mooney from Malin and Carn brothers Tony and Bobby Lafferty. The condition affects, on average, one in 3,500 males.
After lobbying for some time, Fine Gael Donegal North East Deputy Joe McHugh and his colleague, Andrew Doyle TD, have now been informed by Government Chief Whip, Minister Pat Carey TD, that Dáil Eireann will debate a motion on Duchenne Muscular Dystrophy
Liam Mooney
(DMD) on May 21. Duchenne Muscular Dystrophy results in an average life expectancy of late teens or early 20s, and currently no translational research and no clinical trials for DMD are being carried out in Ireland
“On May 21, Dáil Eireann will debate the motion. I will be advocating the motion, and I will be targeting something achievable and realistic, within existing funding budgets. We are all aware of the current budgetary constraints and we will have to work within that framework," said Deputy McHugh.
"There are promising research strategies in place in other countries for Duchenne Muscular Dystrophy, which accelerate drugs through the clinical trial process, including in the UK," he said, adding that Irish Duchenne sufferers must have access to these trials.
During next Thursday's debate the two deputies will propose that the Irish Government helps fund health research currently being conducted in Britain, in conjunction with the Health Research Board (HRB) and other agencies of expertise.
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