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Nick Catlin has a son with Duchenne and is CEO and a founding member of Action Duchenne.
Carl Tilson a young person living with Duchenne met with Health minister Ann Keen today on Monday 14th July. Carl spoke from the heart about Duchenne:
Our champion MP Nigel Evans debated with Health Minister Dawn Primarolo last night July 2nd (view the Hansard full debate notes in our document library www.actionduchenne.org) in the House of Commons on Duchenne Muscular Dystrophy.
Action Duchenne has received information from the coroners report concerning the sudden death of a little boy in Wales with Duchenne.
It is with great sadness that we have to report that a 7 year old boy in Wales with duchenne muscular dystrophy undergoing steroid treatment died suddenly on 27 April 2008. The thoughts of everyone at Action Duchenne goes to his family at this time. The family have asked Action Duchenne to bring to parents’ attention the circumstances surrounding his death.
"The Government fully accepts that everything possible needs to be done to bring an end to the tragic impact Duchenne Muscular Dystrophy (DMD) has on individuals and their families." Prime Minister (Gordon Brown) Office 31st October 2007.
What makes this statement so important is that at last someone in the Government has heard of Duchenne!
Jannette wrote:
Well done! What more can I say? I know we are all impatient for things to move......
Mark Silverman wrote:
Ditto all the above. Great job Carl - lets hope you won over the minister and that......
esther wrote:
Carl did an amazing job yesterday and gave the whole meeting a true insight into......