making muscle wasting history

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• Oadby Owls Members - Online Donation Page - 31 December 2012

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Why are we supporting Action Duchenne?

Oadby Owls Football Club have announced that Action Duchenne will be their Charity of the Year from 2012-2014.

The partnership was made possible when we met with Emma & Andy Hallam who have a son Alex (aged 5) who was diagnosed with the condition in April 2010. Alex is now part of our Academy.

The partnership will raise awareness of Duchenne Muscular Dystrophy, the life limiting and currently incurable condition which affects 1 in 3,500 boys born in the UK. You may have seen the campaign on X-Factor 'Together for short lives'... there was a video clip of a family who had 3 boys living with this condition.

It seems like a perfect match! Duchenne only affects boys and they are often only diagnosed when they reach the age of 5. It affects their ability to play sports like football. As a result, it would be a great opportunity to involve all our boys and parents in the Academy to do something amazing and help boys with Duchenne so hopefully they will be able to continue to enjoy the sports they love most!

Together with parents, we aim to raise in excess of £10,000 to fund research into a cure or viable treatments for the disease.

What is Duchenne Muscular Dystrophy?

Duchenne is a severe muscle wasting disease and only affects boys. 100 boys are born with it every year in the UK which is caused by a genetic variation in the dystrophin gene and there is no cure. This disease is often only detected when the child reaches their 5th birthday (Alex was nearly 4 when he was diagnosed) when it is discovered that they have difficulties walking, running, jumping and climbing stairs. Although now diagnosed, Alex is on long-term steriods which have helped him massively and to most he seems just like any other little boy of his age.

Duchenne causes muscles to gradually weaken making even the simpliest of tasks incredibly difficult and ultimately leads to heart and respiratory problems in their late teens/twenties. Unfortunately it does currently lead to a shortened lifespan usually mid-late 20's although with advancing treatments and internationally agreed standards of care we now have real hope of extending the lifespan and quality of life for all those young people living with Duchenne.

Whilst a cure is not available yet... we are getting closer every year to finding something... but we need to continue the fight to raise awareness and money so that we can continue to fund the researchers and scientists. But we don't have much time, to help cure Alex we need to move fast, the sooner he receives treatment the more benefit he will see from it.... It's time to stop wasting!!!!

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