Tomorrow, 7th September, marks annual Duchenne Awareness Day – a day in which the entire community comes together with one clear mission – for our families and raising the profile of Duchenne muscular dystrophy to a wider audience.
Our CEO, Shelley Simmonds, says, “Here at Action Duchenne we have lots of events planned to mark the occasion and to do our bit to help a cause which is close to many of our hearts. We are delighted to announce the launch of our mini-website which is a simple yet powerful tool in educating your friends and wider circle about Duchenne.” Please help to spread the word:
>>>>> www.ThisIsDuchenne.org <<<<<
– Duchenne affects about 2,500 people in the UK, with the vast majority being male
– It is caused by mutations that stop production of a vital muscle protein called dystrophin
– The muscles weaken and waste away over time
– It first appears early in life and is usually diagnosed around the age of 4
– Life expectancy is reduced to an average of approximately 30 years
– IT HAS NO CURE, and the only treatment is effective in only 13% of cases
Redefining ‘normal’ – disability from a sibling’s perspective
