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Dáil debate for Duchenne sufferers
23.02.09
DONEGAL North East T.D.,
Deputy Joe McHugh has secured a Government
commitment to hold a Dáil debate on the plight of
families living with Duchenne Muscular Dystrophy.
Three Inishowen boys are affected by the rare and
fatal condition - Liam Mooney from Malin and Carn
brothers Tony (7) and Bobby (2) Lafferty. |
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The condition affects,
on average, one in 3,500 males and results in an
average life expectancy of late teens/early 20s. An
Tánaiste Mary Coughlan TD has agreed to facilitate a
debate on the topic, following speeches during the
Order of Business by the Deputy McHugh and his Fine
Gael colleague, Deputy Andrew Doyle. They said the
news would come as a massive boost to the 160 Irish
families affected by DMD. “Funding must be allocated
to what is universally regarded as the most
promising |
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research strategies in
order to accelerate drugs through the clinical trial
process and to ensure that Irish sufferers have
access to these trials," said Deputy McHugh. "We are
proposing that the Irish Government help to fund
health research that is currently being conducted in
Britain, because there is no adequate research
facility in Ireland.” Last year, the Oireachtas
Joint Committee on Health and Children unanimously
voted in favour of supporting funding of Duchenne
research, but the first movement by Government in
this direction only happened last week. Duchenne
Ireland, a charity organisation, will raise €200,000
annually towards funding translational therapies for
Duchenne, said Deputy McHugh. Minister Coughlan has
agreed to facilitate the debate, subject to the
agreement of the various party whips in Dáil Eireann,
added Deputy McHugh. |
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