Jeanettes Challenge

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One of our members Jeanette has just finished this amazing challenge, in 2 hours, 1 min and 22 sec. Jeanette says “I found it tough-going in the cold wind at start with crowds, but then got too hot! Managed to … Continued

Living with Noonan Syndrome

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Andrea was four and a half when she had her first open heart surgery, having been diagnosed at birth with Pulmonary Valve Stenosis. But it wasn’t until she was 16 that the Noonan Syndrome diagnosis came and tied in many … Continued

My Journey With Noonan Syndrome

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I became involved with Noonan syndrome almost by accident but now I have completed almost 30 years of research into the condition and helped to discover the main gene responsible for Noonan syndrome. The first meeting of families with Noonan … Continued

Brian Carlton

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Brian (at 7 and now)Adam (at birth and 4 weeks) Brian Carlton and his wife Norma didn’t know anything about Noonan Syndrome until their third child Joanne came along. When she was found to have heart problems, just like her … Continued

BSPED conference in Cardiff

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Two of our trustees, Andrea Reid – Kelly and Ian Legg are in Cardiff this week attending the BSPED conference . This is the British Society of Paediatric Endocrinology and Diabetes – Andrea and Ian are there to raise the … Continued

Sharon’s Story

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Growing up with a brother with Noonans Sharon Allsopp, our deputy chair was four years old when her brother Richard was born. He was the third to be born to their parents and having had two healthy girls, they assumed … Continued

Richard’s Story

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Growing up with Noonans has affected Richard Allsopp’s education, social life and achievements. But he’s gone through mainstream school, completed a degree, enjoyed a varied career and lived on his own for many years. Here’s his story. Richard is the … Continued

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