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Charity’s pioneering ‘Takin’ Charge’ project helps young men with rare genetic disease prepare for adulthood

Young men living with Duchenne Muscular Dystrophy will benefit from a new programme called ‘Takin’ Charge’ designed to help them prepare for adulthood. The pioneering project has been made possible by a generous grant of nearly £500,000 awarded over five years to Action Duchenne, the UK charity for Duchenne by the Big Lottery’s ‘Reaching Communities’ Fund. Duchenne is a life limiting disease that is caused by damage to the dystrophin gene and affects 1 in 3,500 male births in the UK.

The availability and quality of care for young people with Duchenne during later teenage years, a critical period of life when preparing for adulthood, is often poor or non-existent in many areas of the country. Action Duchenne’s ‘Takin’ Charge’ project is aimed at 14-19 year-old young people who are going through ‘Transition to Adulthood’, preparing them to reach their full potential in their twenties and beyond.

Nat Sloane, Big Lottery Fund’s England Chair, said: “Action Duchenne is giving young men living with this rare muscle wasting disease the chance to take control over their lives and reach their full potential. I am delighted that the Big Lottery Fund can help groups like this make such a difference to individual lives.”

Nick Catlin, CEO of Action Duchenne commented, “Advances in Standards of Care and medical breakthroughs have extended the life expectancy of young men living with Duchenne from late teens to 30/40 years. However, support for the learning and education of these young men has not kept up and our ground-breaking new programme is designed to help them become better prepared for life after school.”

He added “Achieving Lottery funding marks a significant milestone in our history by recognising the value of our services and the magnitude of our efforts in the community. ‘Takin’ Charge’ is the next step to giving our boys independent, rewarding lives and we are truly grateful to BIG for making our project a reality.”

Action Duchenne’s project promotes self-advocacy and independent living and covers important areas such as employment and sexual health. Working closely with the Centres of Excellence, the project aims to offer an accredited e-learning programme that will help equip young people with Duchenne to become advocates for themselves, opening the door to new opportunities in education and employment.

Mark Silverman, a trustee of Action Duchenne said, “We are absolutely delighted to win this funding for the Takin’ Charge programme. It is not so long ago that the outlook for Duchenne patients was pretty bleak with no hope, now at last we are seeing recognition of the changed expectations for young people with Duchenne. They are increasingly living much longer and whilst variations in standards of care still exist across the United Kingdom, people living with Duchenne can reasonably expect to have an adult life where they take their place in the community and make a positive contribution.”

Two other programmes will run in parallel with ‘Takin’ Charge’ : ‘Letting Go’ will support parents of young people going through Transition to Adulthood, giving advice and strategies on how to best to promote independence, and ‘What about Us?’ will support siblings of young people with Duchenne aged 14-19 years.

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Notes to Editors

About the Big Lottery Fund

The Big Lottery Fund is the largest distributor of Lottery money to good causes. It is responsible for delivering 46 per cent of all funds raised for good causes (about 13 pence of every pound spent on a Lottery Ticket) by The National Lottery.

Since June 2004, BIG has awarded over £3.6bn to projects supporting health, education, environment and charitable purposes. Most of its funding is awarded to voluntary and community sector organisations.

BIG delivers funding throughout the UK, mostly through programmes tailored specifically to the needs of communities in England, Scotland, Wales or Northern Ireland as well as some programmes that cover the whole UK.

BIG is a non-departmental public body sponsored by the Department for Culture, Media and Sport (DCMS).

For more information, please visit: www.biglotteryfund.org.uk

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. 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. For more information please visit: www.actionduchenne.org/geniusproject
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/NAC

For more information please visit: www.actionduchenne.org

Editors Contacts

Nick Catlin
CEO, Action Duchenne
Tel: 0208 556 9955
Email: nick@actionduchenne.org

Andreina West
PR Artistry Limited
Tel: 01491 639500
email: Andreina@pra-ltd.co.uk

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