McHugh hits out at Duchenne 'insult'

by Admin 7/13/2008 10:39:00 PM

McHugh hits out at Duchenne 'insult' 30.06.08

THE plight of two Inishowen families living with a rare and fatal condition has reached the floor of Dáil Eireann.
Three Inishowen boys suffer from Duchenne Muscular Dystrophy - Liam Mooney from Malin and Carn brothers Tony (7) and Bobby (2) Lafferty. The condition affects, on average, one in 3,500 males.
Last Thursday in the Dáil, Fine Gael Deputy Joe McHugh and his colleague Deputy Andrew Doyle called on the Government to find a way around regulations preventing the State from funding clinical trials.
“Two families in my constituency who have three boys affected by DMD between them have been fundraising for the past month and have raised €70,000. Time is not on the side of these families as premature death is looming for their children.
Liam Mooney
"It is unthinkable that the Government is unable to find a way to help fund their participation in the research which they say is their only hope," said Deputy McHugh. Fine Gael has suggested a mechanism for the Government to fund the charity being established by affected families, Duchenne Ireland, if they are unable to directly fund the British trials. Both deputies condemned the Government’s response that it had provided €9,000 of National Lottery funding to the Muscular Dystrophy information day. The Fine Gael deputies described this sum as an "insulting response in light of the plight of the families affected".

 

Original Article thanks to Inisowen News: http://www.inishowennews.com/08DuchenneMcHugh.htm



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