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Martin Bashir becomes patron of Action Duchenne, the Duchenne Muscular Dystrophy Charity

Award-winning journalist supports Action Duchenne – the only UK charity that campaigns solely for treatments, research and improved standards of care for sufferers of Duchenne Muscular Dystrophy, a devastating, life limiting illness

 
PRLog - May 8, 2012 - Martin Bashir, the award-winning journalist, has become patron for Action Duchenne, the only UK charity dedicated solely to raising awareness and funds for research into a cure and providing support for families living with Duchenne Muscular Dystrophy. The disease 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. Martin’s own brother Tommy died from Duchenne at the age of 29.  Since being established in 2001, the charity 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.  Action Duchenne has recently donated over £160,000 to Royal Holloway to support a ground-breaking project to develop a process for delivering full length dystrophin, which could provide effectively provide a cure.

Born and educated in the UK, Martin Bashir currently hosts his own daily news broadcast based in New York, having joined NBC in 2010 after spending six years at ABC. He is best known for conducting a series of exclusive interviews and making ground-breaking landmark discoveries. His career has involved work on a wide range of television and radio programmes including Panorama, Public Eye, The Midnight Hour, Sunday and Pick of the Week. He has written for many publications including The Financial Times, The Sunday Times, The Sunday Express and the Tatler. He has won numerous awards for his work including three BAFTA nominations, five Royal Television Society Awards and collected a BAFTA award for his interview with the late Princess Diana.

Martin Bashir said; “I am delighted and honoured to have been invited to become a Patron of Action Duchenne.  I know something of the devastating effects of this disease having cared for my brother Tommy, who was born with Duchenne.  It ultimately took his life but his courage made our family realise that we too needed to do what we can to encourage research, raise funds and support families who confront this condition with such bravery and resolve.  I hope that as Patron I will be able to partner with individuals and families who must live with the condition.”

Martin also supports the work of Charley’s Fund, a US charitable organisation which is seeking to find a cure for Duchenne Muscular Dystrophy.

Nick Catlin, Founder & Head of Research at Action Duchenne said; “We have a large number of dedicated and active supporters who work tirelessly to help our cause. Martin becoming a Patron gives us a fantastic boost and shows how people in the public eye can help families that are affected by this devastating, life-limiting condition. We are very grateful to all our supporters and will continue to focus on our goal of finding a cure and effective treatment for those living with Duchenne and their families.

For more information on Action Duchenne and Duchenne Muscular Dystrophy please visit: www.actionduchenne.org.

-ends-

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/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

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
Editors Contacts

Nick Catlin
Founder & Head of Research, 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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