Race Against Time Campaign
The Race Against Time Campaign is back on the Road.
We are launching a new briefing document that sets new demands for Government funding.
The draft of the new document - Making Muscle Wasting Histroy can be found in our document library.
Join our Lobby of Parliament on June 18th.
What is the Race Against Time Campaign?
The Race Against Time Campaign was established by Action Duchenne (then PPUK) to raise awareness of Duchenne with Government policy makers and to win funding for Duchenne research. In 2002 Duchenne families were dismayed to find that successive governments had all but ignored Duchenne as a disease and little funding was directed at Duchenne research. Even today conditions like Cystic Fibrosis have a greater public focus and have 10 times the number of research projects in progress.
What have we done so far?
In 2003 Action Duchenne with two other charities (MDC and the DFSG) helped to form the MDEX consortium and Action Duchenne led the campaign to win funding for a major new gene therapy for Duchenne. The Department of Health agreed 1.6m for the project for the new MDEX consortium to organise a clinical trial for Duchenne using small molecules called antisense oligonucleotides. The Medical research Council then agreed a further 0.6m of funding to start a systemic delivery trial.
Action Duchenne and our Duchenne families have continued to lobby MP’s and government ministers. Action Duchenne presented its case for £30m of new funding to the DoH in a briefing document called “A Change is gonna come” submitted to Andy Burnham’s office at a meeting on 21st November 2006 and at a meeting with Lord Hunt on 15th March 2007. In a “Change is gonna come” we argued for further funding for the MDEX project as the current funds run out in 2008. We also campaigned for government funding for the Summit drug discovery programme for Duchenne.
Action Duchenne also supported bids in “A change is gonna come” from leading UK clinicians Francesco Muntoni and Kate Bushby to develop new translational research centres of excellence to make sure we had the facilities to take this new research to patients in the clinic.
In 2007 the Medical Research Council announced that Professors Muntoni, Bushby and Mike Hanna had been successful in obtaining a £2.8m grant for a new Translational Research Centre at UCL/Great Ormond Street/Newcastle University.
Scotland
Campaigners have lobbied the Scottish parliament in June 2006 and presented the largest ever online petition to the Scottish Executive. As a direct result a new post was created for the Scottish muscle services. More lobbies and campaigns are planned for 2007/8.
Wales
There was a very successful lobby of the Welsh Assembly in the summer of 2006 that significantly raised awareness of Duchenne. Further lobbies are being planne
Hold the Government to account
"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