11:50am Sunday 18th March 2012
By Hannah Bargery
A CHARITY set up by a Burtonwood dad has won a second prize after raising cash and awareness for a childhood neurological condition which has no cure.
The Rett Syndrome Research Trust UK was registered in 2010 by Andy Stevenson, of Pinewood Road, after his 11-year-old daughter Beth was diagnosed with the disease, which causes severe physical and learning difficulties.
Since its launch, the charity has raised more than £500,000 for research into the condition and picked up the best new charity prize at the Just Giving awards 2012, having already been honoured at the Charity Times awards in October.
Andy, aged 42, said: “We are delighted to win such a prestigious award in the face of some great competition.
“It is great for our supporters and fundraisers to get some recognition for all their hard work and as we are all parents and not professional charity workers, we are delighted that the panel of judges deemed us worthy enough to win.”
Rett syndrome is an autism spectrum disorder that can develop in otherwise healthy young girls as they begin to walk and talk.
Beth needs 24-hour care, spending most of her time in a wheelchair. She is unable to speak and suffers from epilepsy.
Andy founded the charity with five other affected families and he hopes their efforts will lead to improved treatments to ensure it becomes the first reversible brain disorder.
He celebrated the award with ambassador and Warrington Wolves star Lee Briers and Beth.
He added: “Lee has helped us enormously since we launched and nothing has been too much trouble for him. My daughter Beth gives me the inspiration to keep working towards a cure for Rett Syndrome.”
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