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Action Duchenne supports bid for Pride of Britain Nomination by Carl ‘Action’ Tilson

Manchester terminally ill fund raiser bids for nomination to raise awareness of little known disease that is the biggest genetic childhood killer

Carl Tilson, known as ‘Action’ Tilson to his many friends and supporters, is aiming to be nominated for one of the Pride of Britain Awards. Already living past expectations, some might say, on borrowed time, and despite being almost completely paralysed Carl has worked tirelessly to promote awareness of Duchenne Muscular Dystrophy, the condition with which he lives. Earlier this year Carl had an event at Manchester City Football club raising over £30,000 to help find a cure for the disease. This event brought over former fitness model, seven times women’s wrestling champion – Trish Stratus who is a close friend of Carl

Carl began working with Action Duchenne three years ago after coming close to death when it was discovered that he was unable to swallow his food properly. This meant that he was not receiving enough nutrients, and it also led to respiratory and heart complications. Carl now has to be fed directly into his stomach via a tube, he also has to breathe with a ventilator much of the time.

Duchenne Muscular Dystrophy affects 1 in 3,500 male births, affects 2,500 people in the UK and 40,000 globally. Duchenne is a muscle wasting disease that affects boys and very occasionally girls. Boys with Duchenne are usually in a wheel chair by age 10 and often don’t survive beyond late teens or early twenties. Their muscles gradually weaken and waste away affecting every muscle in the body including the heart and the diaphragm which operates the lungs. In Denmark young men with Duchenne live much longer, often into their 30s and 40s, due to the better, multi-disciplinary medical care provided. Action Duchenne is lobbying the UK government to provide a similar standard of care to boys and young men in the UK, and to ring fence the comparatively small sum of £30 million to fund a cure for the condition, which scientists say is tantalisingly close.

Since working with Action Duchenne Carl has done numerous public speaking appointments locally and on a National basis at the Action Duchenne Annual Conference which is attended by parents and boys living with Duchenne, as well as scientists, clinicians and healthcare professionals from around the world. Carl has handed in a petition to 10 Downing Street to call for funding to find a cure and better standards of care. Carl’s aim is to raise awareness of this disease. He explains, “Since becoming very ill three years ago I have decided to use my time, or what is remaining, to raise more awareness for Duchenne. The illness hardly ever gets mentioned and yet it is the single biggest genetic childhood killer. To stop boys and young men dying like this, I need help. I’m looking for as many people as possible to nominate me for a Pride of Britain Award. I believe that this will really get people talking about this Cinderella condition and get it out into the open.

Carl continued, “If I won an award I would dedicate it to all those boys who have paved the way for me, but tragically lost their battle. I want to fight for treatments and a cure for this dreadful disease so that those boys that come after me will not have to suffer in the way that I and my Duchenne friends have.”

Nick Catlin, CEO of Action Duchenne said, “We are very proud of Carl’s achievements. There can be no better ambassador for Action Duchenne than Carl. He works ceaselessly for the charity as a volunteer, constantly coming up with new ideas to raise the profile and to raise funds to find a cure. I hope passionately that Carl is successful in his bid for nomination for a Pride of Britain Award, and ultimately to win an award.”

The deadline for nominations is Friday 7th August. To nominate Carl please visit: http://www.prideofbritain.com/contentPages/forms/Nomination.aspx and follow the instructions.


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Notes to Editors

About Pride of Britain Awards
Pride of Britain celebrates the achievements of truly remarkable people who make our world a better place. It's the biggest national event of its kind in the UK.

Hosted by Carol Vorderman, the Awards attract an audience of around seven million viewers every year in a primetime slot on the ITV1 network in England, Scotland, Wales and Northern Ireland - making it the highest rated awards show of its kind on British television. It also receives huge coverage on GMTV, the ITV1 network, the national press, national and regional radio and national magazines.

Many of the biggest names in show business, sport and politics attend the glittering annual ceremony at the London Television Centre. Among those who have taken part are HRH Prince Charles, Prime Minister Gordon Brown, Victoria and David Beckham, former Prime Minister Tony Blair, Sir Paul McCartney, Bono, President Bill Clinton, Dame Helen Mirren, Sir Richard Branson, Kylie Minogue and Robbie Williams.
However, the stars are never there to receive the accolades - but to present them to real-life heroes whose inspiring stories are brought to life with powerful "reconstruction" films.

Pride of Britain has been described as the most uplifting awards ceremony of the year. And that's how we want it to stay.

For more information and to nominate Carl ‘Action’ Tilson as your unsung hero please visit:
http://www.prideofbritain.com/contentPages/forms/Nomination.aspx

http://www.prideofbritain.com/contentPages/forms/Nomination.aspx


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