A Teams
Action Duchenne is aiming to build a network of those living with Duchenne their parents, families and supporters across the UK and Ireland.
What is an A Team?
Its simple. get together with some family members and friends and organise an event. It could be a coffee morning or car boot sale. You might want to support a parent who is running a marathon with lots of fundraising ideas. You might want to meet your local MP. Set up email contacts and meet on a regular basis.
Let us know where you are and you can put up your news on the Action Duchenne website. You can then attract more people to get involved.
That's an A Team.
Why do we need to build this network?
If we can organise lots of groups around the UK we can begin to raise the £millions that we need for research and campaigns for better medical care.
It also means that Duchenne will always be in the local and national media and we can begin to influence government policy makers. We need this network to raise awareness of Duchenne and Becker and to lobby local MP's, councillors, MSP's and AM's.
Every year Action Duchenne organises mass lobbies of parliament, the Scottish Parliament, Welsh Assembly and the Norther Irish Assembly. Action Duchenne has already begun to organise lobbying of the Dail in Dublin.
The lobbying is for funding research and to win better medical care for young people with Duchenne and Becker.
Does it work?
Yes....Yes....Yes
We have funded research projects for over £400,000. We are currently funding a drug discovery programme with Summit in Oxford for over £250,000.
Action Duchenne has already won over £2m in funding for the MDEX exon skipping clinical trials through the Race Against Time Campaign.
We have successfully campaigned to win a new translational research centre of excellence at Great Ormond Street/Queens Square in London.
But we need so much more.
So make a start today and phone up a few friends and you will see how easy it is to start raising funds for Action Duchenne.