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Date set for Dáil Duchenne debate
15.05.09
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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 |
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(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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