Celebrities send messages of support for downloadable music video and record launched to raise awareness and funds to find a cure for those living with Duchenne
Action Duchenne is supporting a new campaign 'Say hello to Edward' that has been launched to raise funds for the charity and to provide support to Edward Ackroyd , a five year old boy and sufferer of the muscle-wasting disease. The campaign includes the release of a song and music video ‘Never Say Goodbye' on 8 December, written and performed by friends of Edward. Proceeds will go towards the charity funds. It is hoped that a chart position will also increase awareness of the disease. A website www.sayhellotoedward.com has been created to enable people to leave a message for Edward and to download the song.
So far the campaign has received messages of support from Bill Kenwright, Sir Michael Parkinson, and Sir Richard Branson. In addition Edward has recently met Sir David Jason, and is looking forward to meeting the cast of Emmerdale and Robson & Jerome, who have all agreed to lend their support.
By ‘Saying hello to Edward’, registered visitors to the website will be notified when the single is released. They can also help spread the word on Facebook, Myspace and YouTube. So far 5,000 people are registered for the Facebook group.
Duchenne Muscular Dystrophy affects 1 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 5. Duchenne affects the heart and respiratory system and many patients do not live past their twenties.
The new song was written by friends, Shane Hamill and Paul Lovatt-Cooper. Lovatt-Cooper teaches at Wardle High School in Rochdale and is the composer for the renowned Black Dyke Band - recent winners of the 'National Championship of Great Britain' competition and featured in the film 'Brassed Off' at the Royal Albert Hall.
Originally from Rochdale, Hamill met Lovatt-Cooper several years ago when they both worked as extras on ITV's popular soap, Emmerdale.
Nick Catlin, CEO of Action Duchenne said, “This is a very exciting and innovative way to increase awareness and raise funds for our charity. All services have been donated, so any funds that we make will directly benefit Action Duchene and sufferers like Edward. It is heart-warming that so many people are willing to dedicate their time and energy to support patients and relatives in such a creative and positive way.”
Notes to Editors
About ‘Say Hello to Edward’
‘Say Hello to Edward’ is a campaign set up to support Edward Ackroyd and his family. Edward is five years old and has Duchenne Muscular Dystrophy, which is a severe muscle wasting disease, which leads to paralysis and limited life expectancy. The campaign is aiming to raise awareness and funds to help find a cure for Duchenne Muscular Dystrophy, which is tantalisingly close.
In order to help Edward and others like him, the campaign is asking for two simple things. The first is to leave Edward a message on the site by going to the 'Say Hello' section. The second is to buy the song 'Never Say Goodbye' which was written especially for Edward by some of his friends. Because everyone has donated their time and their work for free, 100% of the money raised will go directly to the charity Action Duchenne.
For more information please visit: www.sayhellotoedward.com
About Action Duchenne
Action Duchenne (formally Parent Project UK) was set up by Duchenne families in 2001 to promote new research for a cure for Duchenne. The charity has a strong record in funding research and has to date funded 8 major projects costing £800,000 and has lead the £1.6m DoH funding of the MDEX project. These projects have enabled much needed early work to be completed on exon skipping and other therapeutic approaches.
Action Duchenne holds an international conference every year to bring together researchers and families to exchange new research developments and provide a vital meeting venue for scientists.
In 2005 Action Duchenne launched the Duchenne Registry, the first National Duchenne database that holds gene information of people living with Duchenne and can be used to speed up the recruitment of patients for clinical trials.
In 2006 Action Duchenne launched a comprehensive learning and behaviour toolkit for use by parents and education professionals.
For more information please visit: www.actionduchenne.org
CEO, Action Duchenne
Tel: 0208 556 9955
Say Hello to Edward Founder
Tel: 01706 510 885
PR Artistry Limited
Tel: 01491 639500
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