A WELL-KNOWN beer festival is being dedicated to the memory of a man who helped out there for two decades - unaware he had a life-threatening condition.
Simon Taylor was first taken to the charity Bent and Bongs Beer Bash as a teenager by his Dad and ended up helping out at almost every one of the quirky festivals ever since.
But what he didn’t know was that his body was battling Marfan’s Syndrome. And he died suddenly, aged just 34, days before the start of last year’s event.
Now the 23rd Bent and Bongs later this month has been dedicated to his memory – as a fund raiser for Marfan Association UK, although other local charities and worthy causes will be supported.
Marfan syndrome is one of the more common disorders of connective tissue that can affect the eyes, skeleton, lungs, heart and blood vessels, and may be life-threatening.
It’s as common as cystic fibrosis, affecting an estimated 1 in 5000 people – yet few people know about it. Although long time organisers Atherton and Tyldesley Round Table branch closed two years ago because of falling membership, they formed a charitable trust to make sure the festival itself lives on.
And they hope that this year’s event is more successful than ever as a permanent tribute to Simon, who lived in Atherton.
Press officer Paul Hodson, said: “Simon volunteered at every Bent and Bongs while suffering from Marfan’s Syndrome, although he never even knew it, nor did his parents, his friends, or his family.
“We knew he had some health problems, but nothing associated with that, so it was a massive shock when he died. It was only after his death that Marfan’s was discovered.
“In remembrance of Simon, the Bent and Bongs Charitable Trust selected the Marfan’s Association UK as one of the main beneficiaries for 2012.”
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