Making Muscle Wasting History - Lobby08
What a brilliant day. Over 200 young people, parents, family members and supporters lobbied parliament on June 18th. Film crews came from the South West, BBC, ITV, Sky and the North east to cover the event. Families were interviewed on Bristol and London radio. For the first time we gained widespread coverage and awareness of Duchenne.
In support of our demands for £30m of new money for research and for new UK centres of excellence for Duchenne everyone marched to the Department of Health and then to No 10 Downing Street.
We all lobbied our MP's and finished the day with a meeting at the Central Hall Westminster.
MP's Dave Anderson and Ian Gibson spoke at the meeting in support of our demands.
Nick Catlin CEO of Action Duchenne took up many of the arguments that have been put by minister Dawn Primarolo in recent letters to parents.
Researcher Matthew Wood spoke about the hope for new research and the latest clinical trials in gene therapies and drug discovery in the UK.
Government Health minister Ivan Lewis came and met families and spoke with Nick Catlin and Matthew Wood.
It was agreed at the meeting to continue putting pressure on the government and MP's have already started a new Early Day motion in support in parliament.
After the lobby send this letter to your MP asking them to sign the EDM and send a letter to the secretary of state for health Alan Johnson.
Our demands:
1.1 Cure for Duchenne
There is still no cure for Duchenne Muscular Dystrophy. Young men with Duchenne are facing a short life following the severe muscle wasting that leaves them totally paralysed.
Treatments such as the prolonged use of steroids, non invasive ventilation, the administration of heart drugs, spinal surgery and the use of physical therapy have shown to help to prolong the lives of young men with Duchenne. However the underlying cause of Duchenne has not been treated and young men face a life needing 24/7 care, feeding and support to meet every other physical need. This is a huge cost to both the NHS and families both financially and emotionally.
The Race Against Time Campaign aims to bring new treatments or therapies to the clinic that will slow or even reverse the severe muscle wasting process. This is vital to prolong life and provide these young people with the best possible quality of life for the future.
1.2 Key demands
We are calling upon the Government to:
• Redress the historically poor levels of Duchenne research funding over the last 10 years by ring fencing £30m of funding for new Duchenne research and clinical trials.
• Increase the number of Centres of Excellence for Translational Research into this condition to cover the whole of the UK.
• Ensure that all people living with Duchenne are given immediate access to new drugs and treatments.
• Ensure that all people living with Duchenne are supported by a multidisciplinary team within 50 miles of their home, which is able to deliver internationally agreed standards of care and support
1.3 Issues to be addressed:
• Funding for the UK MDEX exon skipping trials runs out at the end of 2008. This needs to be extended.
• An effective strategy must be drawn up to support the MDEX team in their development and delivery of exon skipping medicines to patients
• An effective strategy must be agreed for supporting USA biotechnical company, PTC, to complete clinical trials and deliver PTC124 to Duchenne patients
• Extensive financial support must be given to the clinical trials and delivery of new drugs for Duchenne patients by Summit plc in the UK
• A Strategic plan should be agreed for the funding of future clinical trials and treatments for Duchenne.
• Delivery of multi disciplinary team led standards of care for Duchenne patients, using the model established by the new MRC Neuromuscular translational research Centres in London and Newcastle, must be extended to all areas of the UK.
• The pathway for patients and carers to obtain the necessary grants and financial support needs to be made easier. Every person living with Duchenne for example must have 24/7 care packages for up to £200k per annum
Lobby 2008 pics
