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On April 9th 2008, Duchene Ireland and Muscular Dystrophy Ireland will convene the 2008 National Muscular Dystrophy Annual Lobby Day in Buswells Hotel on Kildare Street, Dublin 2, next to the Dáil (Irish Parliament).
Members of Duchenne Ireland and Muscular Dystrophy Ireland (MDI) will come from all corners of Ireland to discuss matters of critical importance to Muscular Dystrophy sufferers. Top of the agenda for Duchenne Ireland will be the funding support for the "Exon Skipping" trials in the UK.
Nearly three years have passed since Duchenne Ireland parents met with MDI and Government officials to try and secure funding for the "Exon Skipping" trials in the UK and still no money has been sanctioned to support this life saving clinical trial, that is the best hope for DMD boys and girls that has ever been seen.
The interesting twist to this Lobby day, is that the TDs are on the side of the boys and girls, with many of them voicing their support for the lobby day and booking their place well in advance of the day. So remember 12 noon in Buswells Hotel - Be their and voice your support to save these kids lives. And Remember - It's Free Admission !
Duchenne Muscular Dystrophy is 100% fatal at present - This does not have to be the case - support Duchenne Ireland and Muscular Dystrophy Ireland now and tell your TDs to support the Exon Skipping Trials in the UK.
Make the difference - Voice your support:
April 9th 2008 - Buswells Hotel - Kildare Street, Dublin 2, @ 12 noon. |
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