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Thanks for taking the time to visit my JustGiving page. I am very honoured to have been given one of the few places awarded to the Cornelia de Lange Syndrome Foundation in the 2012 London Marathon to run on their behalf to raise money for this special cause. 17 years ago my cousin Jade was born with Cornelia De Lange Syndrome; one of only a few diagnosed in South Africa at the time. My aunt and uncle struggled through many tough and challenging times from diagnosis to nearly losing her several times.  They are devoted parents and have fought to gain knowledge of this rare sydrome.  Only through the UK foundation links with South Africa were they able to understand more about Jade's condition and how to handle her special needs.   CdLS is a rare genetic disorder affecting 1 in 100,000.  Those affected have multiple disabilities.  All have learning and behavioural difficulties, many have physical disabilities (problems with growth, cardiac, neurological and limb defects).  At the moment there is still no knowledge of what causes the syndrome.  The foundations mission is to work as an international organisation dedicated to ensuring early and accurate diagnosis of CdLS.  They promote research and enable families, friends and professionals to make decisions and plan for the present and future of those affected.   Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving.  Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate.   I really appreciate your support and thank you for your donation which I know will enable others like Jade and their families to get the help and support that was so beneficial to my family as well as helping the CdLS foundation with further research by working with leading universities.     Many thanks Bridget

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