17 girls are born with RETT everyday, and although it’s as common as Cystic Fibrosis, RETT SYNDROME is relatively unknown
FOR IMMEDIATE RELEASE
From care to cure . . . a new charity's approach to RETT SYNDROME
CURE RETT is a new charity whose aim is to focus on the care and support of families trying to cope with RETT SYNDROME, a currently incurable genetic condition.
Driven by the families need to raise awareness of RETT, the overwhelming feeling was to have a focused base for those wishing to find help and advice from others who were experiencing similar problems. At the same time working towards a possible cure through fundraising and other initiatives.
RETT SYNDROME is globally one of the main causes of disability in females. 17 girls are born with RETT everyday, and although it’s as common as Cystic Fibrosis, RETT SYNDROME is relatively unknown.
Though genetic in origin, symptoms rarely appear before the age of 18 months. Early typical development is rapidly arrested and followed by loss of acquired skills. Most children with RETT SYNDROME lose the ability to walk, use their hands purposefully, speak and perform independent actions. Many develop seizures, cardiac problems and crippling scoliosis. All of which leaves them needing 24-hour care. In worst cases this can result in tragic and untimely death.
CURE RETT grew from the dream of one couple when they discovered their daughter Carys had RETT SYNDROME.
The charity, originally called 'Cure for Carys' was created by James and Bonny Westgate earlier this year, but the rapidly expanding network of families who are affected by RETT has meant that a new, dynamic, forward-thinking charity was needed.
James Westgate remains committed to this new approach and is the Executive Director of the charity, he says:
'We are ever hopeful that a cure will be found for Carys and the other little girls we’ve met. They have touched our hearts with their courage and happiness despite the difficulties they face every day. We need to get the message across that families are not on their own and there is help and support out there for those that really need it.'
For all information on RETT SYNDROME and how you could help visit our website, which will be launched on September 27, 2012.
Also you can stay up to date with all the latest developments on our Facebook page or follow us on Twitter.
Chairman/Director of Media PR
Phone: 0118 9349315
Mobile: 07986 627881
Kori Dryhurst Coates
Director of Family Support &
Advocacy for CURE RETT
Phone: 01947 605315
Mobile: 077966 77574
This press release was distributed by SourceWire News Distribution on behalf of Cure Rett in the following categories: Medical & Pharmaceutical, Health, Women's Interest. For more information visit http://www.dwpub.com/sourcewire