Running for Mark on October 4th

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A keen runner has mapped out a ‘London Marathon’ route to fulfill a pledge to raise funds for his brother who died from a rare genetic condition. Police officer Matt Legg will run the 26.2 miles from Southwater to Goring … Continued

COVID 19 & Face Masks

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As you’ll all be aware, the wearing of face masks is increasingly being promoted by all the UK Governments and Assemblies – for example, the wearing of face masks in shops will generally be mandatory in England from Friday 24th … Continued

Case Study – Lizzie Armour

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“Failure to thrive” – a phrase no parent wants to see written in their baby’s health records, but this is what Lizzie sees when she looks back at her own. She was a frail baby with multiple health problems which … Continued

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

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