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

The Irish Independent from Mon Mar 17, 2008 carried the story of two Irish families determined not to let the Irish Government away with just ignoring our kids battle against Duchenne Muscular Dystrophy (DMD). Well done to all involved, National papers are where we need to be.....

Anyone not currently working on raising awareness of Duchenne and would like to get their message across should contact myself and we can work with our current media contacts and MDI to keep the awareness high for Duchenne in the lead up to the April 9th Meeting.

http://www.independent.ie/national-news/families--in-funds-appeal-to-help-save-children-1319559.html

The Irish Examiner ran a "Page 2" picture and story of one Irish Family fighting for funding for Exon Skipping Trials in the UK. Inteview occurred prior to the March 2nd Duchene Information Day held at the Clarrion hotel Liffey Valley Dublin. The online version is available here:

http://www.irishexaminer.com/text/story.asp?j=ojcwgbmhmheycwey&p=5z634353&n=52634407 

The Derry Journal carries the full story of desperate families in a race to save children...

 http://www.derryjournal.com/inishowen/Desperate-families-in-a-race.3899413.jp