The families of those living with Duchenne often have to dedicate themselves to caring for their child on a full-time basis, whilst also campaigning for the services they require and navigating round a complex and regionally variable benefit system. This can lead to additional strain on families.
Andy Soar, Campaigns Officer at Action Duchenne commented, “Action Duchenne welcomes the appointment of Jeremy Hunt and Norman Lamb to their new positions. We hope that Jeremy Hunt will continue to focus on the difficulties which carers and parents of severely disabled children deal with, particularly when trying to access new services.”
Earlier this summer, young people living with Duchenne Muscular Dystrophy, their families and supporters lobbied the Department of Health and MPs at Westminster and the devolved governments in Edinburgh, Cardiff and Northern Ireland. They were asking for:
• matched funding for Action Duchenne’s ground breaking research programme
• improved multidisciplinary medical care to be delivered via Centres of Excellence throughout the country
• access to specialist educational support and support for independent living
In their message, the families called for the commissioning of more multidisciplinary centres of excellence as seen in Denmark. These centres provide holistic care and monitoring services, tying together the complex care requirements of those living with Duchenne. Such care has been shown to both improve life quality and extend life expectancy by up to 10-15 years.
Duchenne Muscular Dystrophy affects one in 3,500 male births in the UK, and is the most common and severe type of muscular dystrophy. Sufferers are diagnosed, usually, by the age of five and rarely live past their twenties. Since being established in 2001, Action Duchenne has successfully campaigned to increase awareness of the disease to improve standards of care and raised several millions of pounds to fund medical research and partnerships.
For more information on Action Duchenne and Duchenne Muscular Dystrophy please visit: www.actionduchenne.org.
Notes to Editors
About Action Duchenne
Established in 2001 Action Duchenne aims to support and promote innovative research into a cure and effective medicines for Duchenne/Becker Muscular Dystrophy. The charity, which is led by Duchenne families, aims to promote awareness of the condition, to improve care services, and provide access to a range of educational and support/development programmes for people living with Duchenne at every stage of the condition. This is achieved by working in partnership with government agencies, NHS and care organisations, other charities, academic, scientific and research groups, and biotech companies worldwide.
Action Duchenne is actively campaigning for best practice in care for Duchenne based on the publication of an international consensus document in Lancet Neurology in Jan/Feb 2010. The published article was the product of an extensive review by 84 international experts in Duchenne Muscular Dystrophy diagnosis and care, and was supported by the Centers for Disease Control (CDC) in the US. It provides an expert guide to recommendations on the multidisciplinary care that should be available to all individuals with Duchenne. Several Duchenne patient organisations including Action Duchenne and the TREAT-NMD network have helped to produce a ‘Guide for Families’, based on the original academic article, which is written in language accessible to all without a medical background.
Since 2003 Action Duchenne has provided £4m for research projects and partnerships. The charity has worked with the MDEX consortium, Department of Health, and the Medical Research Council to deliver new clinical trials for Duchenne drugs. In addition, it has been instrumental in developing projects with biotech companies both in the UK and US including key projects with AVI Biopharma and Summit.
In 2005 Action Duchenne launched the DMD Patient Registry, a national database that holds gene information of people living with Duchenne that is used to speed up the recruitment of patients for clinical trials. For more information please visit: www.dmdregistry.org
In 2008 Action Duchenne launched the Include Duchenne project in partnership with Decipha. This programme addresses the learning and behaviour needs of those living with Duchenne. In 2011 Include Duchenne won the National Lottery Award for Best Education Project for Decipha. For more information please visit: www.decipha.org
Action Duchenne promotes social inclusion within the community for young men living with Duchenne through its Genius programme. Its Takin’ Charge project is a programme aimed at developing skills of adulthood that will be additional to GCSEs covering areas such as IT and social media, self advocacy for medical care, workplace skills, skills for independent living including developing a social life, relationships and sexual health. For more information please visit: www.actionduchenne.org/
In 2010 the National Advocacy Council was launched to spearhead the lobby for government funding for research into Duchenne and to improve access to Standards of Care. www.actionduchenne.org/
Patrons of Action Duchenne include: actress Helena Bonham-Carter, cellist Julian Lloyd-Webber, journalist & broadcaster Martin Bashir and radio broadcaster & media trainer Susan Bookbinder. In addition, Richard Goodman, one of Great Britain’s leading young athletes is an Ambassador for Action Duchenne,
For more information please visit: www.actionduchenne.org
Campaigns Officer, Action Duchenne
Tel: 020 8556 9955 or 07917 051 446
PR Artistry Limited
Tel: 01491 639500