Clear Travel’s Charity – 2012

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We are pleased to announce our nominated charity for 2012 is Duchenne Now.

We are honoured to be associated Duchnne Now and to be able to support this very important and worthwhile charity (Registered Charity No. 1146355)

Duchenne Muscular Dystrophy is a terminal muscle wasting condition. Duchenne is the biggest genetic child killer in the UK. There is currently no viable treatment or cure for Duchenne.
joey
Duchenne Now is a UK charity with international relationships fighting for a cure and viable treatment for Duchenne. Duchenne Now has very clear aims and objectives that will achieve the hopes and dreams of the Duchenne community. We only fund research projects and trials with a clear road map to market. By funding these projects we will make hope an exciting reality to save this generation of children living with Duchenne.

Every penny raised by Duchenne Now goes to funding active research projects and clinical trials.

Duchenne is a devastating muscle wasting condition that leads to paralysis and early death. Children appear to be developing normally but their muscles are constantly wasting away, by an average age of 10 children are in a wheelchair they then loose the use of all their muscles leading to complete paralysis. Degeneration of the lungs means that as the condition progresses children with Duchenne need a ventilator to breath. Your heart is a muscle too. Average life expectancy for children living with Duchenne is late teens.

We aim to get treatments to market that will halt and potentially reverse the effects of this heartbreaking condition. By showing your support you will be making a difference to everybody living with Duchenne.

Joey Levene is only 7 years old; he was diagnosed with Duchenne at 18 months. He is one of the 2500 children living with Duchenne in the UK today (300,000 children world-wide). Every day that goes by the damage is getting worse and his muscles are wasting away. Please help to make a difference to Joey and everybody living with Duchenne.

Tony’s story (Joey’s Father – a Dad’s Perspective)

joeyandtonyIt’s hard to believe that’s it’s been 6 years since we got told that our beautiful little boy has Duchenne Muscular Dystrophy. Like most of you we had never heard of this condition, let alone understood the implications of this diagnosis. We quickly had to get to grips with the fact that Joey had a progressive terminal muscle wasting condition.

Our race against time has begun.

Duchenne is 100% fatal, there is no cure. We were told by doctors that he will die with little or no muscle function in his late teens, maybe early twenties if we were lucky… My dream of Joey becoming a footballer amongst many other aspirations changed overnight into a simple dream of him being alive on his 21st birthday.

Joey is now 7 years old and is a great, lively, cheeky little boy who enjoys doing what all little boys do including playing with his sisters Mia & Leora, being on his XBox and playing with his friends. He is a really happy boy and is doing well at school. However his muscles are constantly wasting away, in recent months he has got his first manual wheelchair and has started asking when the clever doctors will find the medicine for his poorly muscles.

Since Joey’s diagnosis we have received fantastic support from people near and far who have gone the extra mile time and time again to raise much needed funds. Trials are finally happening that may slow down or even halt Duchenne but now more than ever this remains a race against time.

Duchenne Now is a zero cost charity (all our overheads have been kindly sponsored). Duchenne Now will only fund research that has a clear road map to market within the shortest time possible to find viable treatments and a cure for all 2500 children with Duchenne in the UK alone. We have great international links and are constantly looking at world-wide research projects to fund.
Together we can change the future!

How is Duchenne caused?

duchenneOur bodies are created based on essential genetic instructions from our DNA which is the genetic basis for nearly all life on the planet.

Duchenne is caused by faults in the gene found on the X chromosome. This is why Duchenne almost exclusively affects boys.
The dystrophin gene is responsible for producing a protein called dystrophin in muscle cells that appears to act as an anchor to help to keep the cells walls intact. Due to its large size it is particularly prone to mutations. It is the break up and death of muscle cells through a lack of or poor functional dystrophin that causes the severe muscle wasting in Duchenne.

• Duchenne is the biggest genetic child killer in the UK
• There is no treatment or cure for Duchenne
• Duchenne is 100% fatal
• There is only one outcome
• However there is hope
• An active treatment is within our reach
• You support will make a difference to end DUCHENNE NOW. (Visit: www.duchennenow.org )

You can also support Duchenne Now by making an online donation via www.justgiving.com/duchennenow/donate

For more information on Duchenne Now please contact Esther Derber on Tel: +44 (0) 1706 693 399 or Email: esther@duchennenow.org

For all travel plans please contact Clear Travel Tel: + 44 (0) 161 408 5070 or Email: reservations@cleartravel.co.uk

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