A WARRINGTON based charity backed by Wolves rugby league star Lee Briers has been voted “Best new charity” of the year at a national awards ceremony in London.
Rett Syndrome Research Trust UK was presented with the Best New Charity Award at the Just Giving Awards 2012 at Shoreditch Town Hall, London.
Father of two Briers, aged 33, decided to back the new charity Rett Syndrome Research Trust UK, because of his longtime friendship with Andy Stevenson, fellow dad and father of daughter, Beth aged 12, who suffers from the condition, which is a devastating childhood neurological disorder for which there is no cure.
Andy said: “We are naturally delighted to receive this award. Lee has been a massive help in getting Rett Syndrome known in the wider community and a great support to me personally. Nothing has been to much trouble for him.”
The condition first strikes previously healthy little girls between the ages of 6-36 months and robs them of their speech, normal movement and the ability to use their hands.
Then begins the long regression that may leave her in a wheelchair. Extreme anxiety, Parkinson-like tremours, seizures and orthopaedic problems are common. Although many girls live into adulthood, all are at increased risk of sudden unexplained death.
But researchers know that Rett Syndrome is caused by mutations in a gene called MECP2. This gene makes a protein which is required for proper maintenance of brain function. Recent research has demonstrated that if proper levels of the protein are restored, the symptoms of Rett Syndrome are reversed in laboratory models of even late-stage disease.
Rett Syndrome Research Trust UK was established in July 2010 as a grassroots effort by Andy and other families of daughters with Rett Syndrome.
Any one who would like to know more about supporting the charity contact Andy at andy@reverserett.org.uk or on 07921 123452.
Picture shows Andy and Lee with the New Charity of the Year award
