4BR is supporting a charity with a brass band link this Christmas – and is asking all our readers to help the cause by getting their record into the charts…
Say hello to Edward
Edward Ackroyd is five years old and has Duchenne Muscular Dystrophy, which is a severe muscle wasting disease, which leads to paralysis and limited life expectancy.
Nearly all of those affected are boys, who are likely to be using wheelchairs by the age of ten through the progressive loss of muscle function, and needing full time care by their late teens.
A Duchenne sufferer surviving beyond their teenage years is rare.
All you have to do is got to the website www.sayhellotoedward.com and download the song. It just costs 99p and all the proceeds go to the charity. It’s that simple!4BR
Life limiting
Duchenne Muscular Dystrophy affects 1 in every 3,500 boys just like Edward, and occasionally little girls also.
With 40,000 sufferers worldwide, awareness of DMD is very low, which made the diagnosis particularly shocking for Edward’s parents, Heidy and Paul, and is a devastating reality for all Duchenne boys.
1,500 sufferers in UK
With about 1,500 Duchenne Sufferers in the UK, the charity Action Duchenne works with people and families affected by Duchenne by raising awareness of this terrible condition, providing a support network, raising funds required to support research into a cure, and tirelessly campaigning toward better medical care for this condition, and we are trying to help...
How to help
Everyone in the brass band movement can help the charity by downloading the song ‘Never Say Goodbye’, written by Shane Hamill and Paul Lovatt-Cooper, which is released today, 8th December.
Go to the website
All you have to do is got to the website www.sayhellotoedward.com and download the song. It just costs 99p and all the proceeds go to the charity. It’s that simple!
Get involved
Paul told 4BR: "This really is a charity that is close to my heart. Edward is such a wonderful kid. As soon as I heard about Edward and the appeal I wanted to get involved. Helping to write the song was a nice change from the banding scene, and I hope that in a small way it will bring greater awareness about a terrible disease."
Exploring the relationship between Edward and his loving mother, Heidy, the track is also accompanied by a moving video starring Heidy and Edward as themselves, and all of their friends and family that so kindly lent their time and effort to help out.
Donated free
The services of everyone involved have been donated and costs paid for by friends of Edward, so 100% of the money raised goes to Action Duchenne.
More information
For more information on Duchenne Muscular Dystrophy, please visit the Action Duchenne website: www.actionduchenne.org the Action Duchenne website: www.actionduchenne.org
You can find out more too at: http://uk.youtube.com/user/SayHelloToEdward01
Could you help Edward?
Here are a few examples of what could help us to help Edward:
Join the Facebook Group: ‘Say Hello To Edward’,
Send this presentation to all your friends, colleagues and employees