I encourage people to dig deep into their pockets and join us in what promises to be a fun, very worthwhile evening
Prestigious London venue helps raise funds to fight muscle-wasting illness Duchenne Muscular Dystrophy
Redhook restaurant, in Farringdon, London, is hosting a special charity event, ‘Auction Duchenne’ to raise awareness and funds for Action Duchenne on Wednesday, 12th September. Items to bid for include a boxing glove signed by Dizzee Rascal, and a Star Trek comic book signed by Sir Patrick Stewart.
The prestigious London venue, famous for seafood and mouth-watering steaks, is opening its doors to help the only national UK charity dedicated solely to raising awareness and funds for Duchenne Muscular Dystrophy. This is the first event of its kind organised by the charity in a year of activities designed to make their voice heard.
Tickets for the evening include cocktails on arrival, gourmet canapés, unique entertainment, automatic entry into a raffle for a fabulous weekend for two in Wales, and the opportunity to bid in the auction for many interesting and unusual items and experiences. Additionally, guests can purchase a bespoke three-course meal, designed for the evening by head chef Jeff Roxas-Green.
The charity event is the brainchild of Lee Steggles, founder of Got Fitness Exercise Specialists. Lee is a passionate campaigner for Action Duchenne and has helped put together training plans for the charity’s flagship Love Run Events.
Lee Steggles commented, “I was originally inspired by a friend of mine whose 7 year-old son Korben lives with Duchenne. I encourage people to dig deep into their pockets and join us in what promises to be a fun, very worthwhile evening. I am hoping Auction Duchenne will be so successful that it will flourish and grow into a regular occurrence, one of those ‘not to be missed’ events on everyone’s calendar that will help improve the lives of boys living with Duchenne and one day find a cure for this devastating, life-limiting illness.”
Owen Callaghan, Regional Development Officer at Action Duchenne concluded; “We have a large number of dedicated and active supporters like Lee who work tirelessly to help our cause. Holding a high-value, high-profile auction event is a brilliant idea and typical of the sheer creativity and energy projected by truly inspiring people like Lee. 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.”
Tickets for Auction Duchenne are £50 for the evening, and £80 to include the additional three course meal, are available from the Action Duchenne website: http://www.actionduchenne.org/auctionduchenne
For more information on Action Duchenne and Duchenne Muscular Dystrophy please visit: www.actionduchenne.org.
Notes to Editors
Redhook is a restaurant, cocktail and oyster bar on Turnmill Street in Farringdon. It specialises in seafood and steaks (cooked at a searing heat in a charcoal oven) and is open Tuesday–Friday for lunch, dinner and drinks from noon until late and from 6pm on Monday and Saturday.
Redhook’s wine list has over 70 great wines from the Americas plus a few favourite clarets. It is part of The Rushmore Group which also owns Giant Robot around the corner on Clerkenwell Road, Milk & Honey and The Player in Soho and Danger of Death on Brick Lane and The Clubhouse in Chamonix.
For more information, please visit www.redhooklondon.com
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
Regional Development Officer, Action Duchenne
Tel: 0208 556 9955
PR Artistry Limited
Tel: 01491 639500
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