In Research
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The Action Duchenne website aims to offer a unique forum for sharing information and ideas in the search for a cure and better medical care for Duchenne and Becker and will at all times attempt to ensure postings are accurate, scientifically peer reviewed and not offensive to individuals. Action Duchenne, however, cannot take responsibility for personal opinions, information and the content of links to other websites. It is essential that you always contact your clinician or GP before taking any course of medication, therapy or supplement.
Dying in Silence
These are fine words from Gordon Browns Office but the truth is that over the last 10 years funding for Duchenne research and clinical trials has been pathetic. It was not until we won the £1.2m for the MDEX trial from the DOH that the Medical Research Council (MRC) funded a clinical trial for Duchenne in 2003 for £650,000. The MRC has spent an appalling 0.3% of its budget on ALL Muscular Dystrophy research in those 10 years. 99.7% of its funding has been spent on other diseases
We still face the reality that few people or government officials have ever heard of Duchenne. Young people still die every week in silence. Only us Mums and Dads and Grandmas and Granddads and family friends understand and feel the pain of this terrible loss of life. I was privileged to be asked to speak at Mark Stylers funeral recently in Coventry and I was painfully made aware of the wonderful support that he had from his friends and family. But the tragedy for Mark was that exon skipping trials ( He needed to skip exon 51 ) and new medicines came too late for him. For Mark and all those other wonderful young people Action Duchenne vows to keep fighting.
Its no use us sitting on sofa wishing for a cure, we have to get our message out to the public and government. Action Duchenne needs money for research and to keep our campaigns going. Please sign a Direct Debit for us today. We need the biggest turn out ever at our Lobby Day on 18th June and we all need to bring our sons and daughters with us. Register today at www.actionduchenne.org/lobbydoc08 and hold this government to account.
1 Comments
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- Carl Tilson
- April 14th 2008
- 11:28am
"Dying in Silence" The true words of Duchenne Muscular Dystrophy! I agree with what Nick has said and I was very sad when I heard Mark Styler had passed away - also quite scared. Words can't describe how great Mark was for the Charity and has a human being - a real hero! Government must take into account, its peoples lifes their dealing with here - money should not be a question! Boys with DMD have come and gone, but what if those boys had the chance to tryout a treatment they may still be alive today?