making muscle wasting history

Race Against Time Campaign

The Race Against Time Campaign is back on the Road!

We will soon be publishing our lobby documents Its Time To Stop Wasting - An End To The Postcode Lottery. and Action Duchenne - Duchenne Families Consultation Report.

Join  our Lobby of Westminster on June 16th.

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.

Race Against Time Campaign - Scotland

Action Duchenne have been lobbying the Scottish parliament since June 2006. In 2006 parent Dean Widd submitted the largest ever online petition to the Scottish Executive. Part of the petition called on the Scottish Government to abolish the means test for the home adaptation grant.

The successful 2006 lobby was followed by further lobbies in 2007 and 2008. Has a result of the lobbying we have seen a new post funded for the Scottish Muscle Network, 16 million will have been put into the wheelchair services by 2011 and from April 2009 the means test for the Housing adaptation grant will be removed.

June 3rd we will be back at the Scottish Parliament. Our lobby document will be available soon.

Race Against Time Campaign - Wales

There was a very successful lobby of the Welsh Assembly in the summer of 2006 that significantly raised awareness of Duchenne. 

June 10th 2009 we will be campaigning once again in Wales, our lobby document will be available soon.

Race Against Time Campaign - Northern Ireland

The Race Against Time Campaign is going to Stormont for the first time. June 22nd. In Northern Ireland families do not have access to a neuromuscular consultant. leaving many families forced to come to Newcastle or London for their sons medical care. Our lobby document will be available shortly.