Government Apathy - Duchenne Heartbreak

by Admin 5/1/2008 3:54:00 AM

Heartbreak! Two devastated Inishowen families are at their wits end after being twice snubbed vital funding which could save their sick children's lives.

The Derry Journal has continued to publicise the lack of effort, imagination and drive shown by the present government in initially refusing to fund Clinical trials into Duchenne Muscular Dystrophy.

Their solution was to recommend the Healt Research Board (HRB). The HRB have indicated that they could only help in funding such a trial if there was a co-funded effort from a registered charity.

Currently MDI, Irelands National Muscular Dystrophy Organization has no ability to co-fund anything close to half of the figure required, and thus the HRB alternative is of no use.

However, the parents involved have initiated an appeal to begin getting some of the appropriate money in place, while they wait in hope for a U-Turn by the government and support the trials that may radically change the lives of children with Duchenne Muscular Dystrophy.

Pictures and full story thanks to the Derry Journal here: 

http://www.derryjournal.com/sectionhome.aspx?sectionID=3914



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Fundraising | Government Lobbying

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