making muscle wasting history

Lobby at Westminster
16 June 2009

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Josh and I went to the lobby at Westminster to add our voices to the Action Duchenne lobby demands, we arent asking much but what we are asking for will help save lives and improve quality of life for those with Duchenne.

THE ASKS:

We need 30 million pouds ring fenced for Duchenne research. To put this in context, government found billions to bail out banks, so this is not a huge or unacceptable ask, this would SAVE LIVES!

We need more centres of excellence! Our Standards of care survey highlighted the postcode lottery of care across the UK. Its simple, those receiving specialised care from teams experienced in Duchenne will live longer and have a better quality of life. Its proven by the Denmark model just how huge a difference this makes. Young men in Denmark can expect to live into their late 30s or early 40s. Here in the UK our young men can expect to live to late teens or early 20s. Denmark has NO DIFFERENT MEDICATION, this is down to the care packeage they receive.

And so thats it, just 2 ASKS, money for research and more centres of excellence.
If you didnt make the lobby then you can still write to your MP with these same demands, ask them to highlight your concerns over care and research funding, meet with them, ask them to raise your concerns with the Secretary for Health Andy Burnham, who shook Joshua's hand! Our standards of care survey and lobby documents (which sets out the demands and explains the needs) are available on our website, please please join the fight for our children and young men living with this. Just look at the pictures, all these making the effort to change this, some travelled huge distances despite the problems and difficulty they faced, to make sure they were seen and heard. YOUR voice, and that of your MP will keep our needs fresh in the minds of those who can make the biggest changes.
YOU really CAN make a difference, so join us in our campaign, lets keep on shouting and raising this, ITS TIME TO STOP WASTING!

Thanks.

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