Become a #NoonanHero

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Our new campaign #NoonanHero is all about sharing experiences and reaching out within our community to spread the message ‘you are not alone’ and to raise awareness of Noonan Syndrome in society. Anyone can be a #NoonanHero; people who have  Noonan … Continued

Generous Donation

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At the NSA we very much rely on the generous support of others. We were delighted to receive £400 from the Marsh Christian Fund this week – a great start to the new year 🙂

VINCI UK Foundation awards £15,000 to Noonan Syndrome Association to support the community of families, and especially children and young people, affected by Noonan Syndrome across the UK.

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The national charity, based in Shropshire, has received £15,000 from the VINCI UK Foundation to address the bullying and sense of isolation which many with Noonan Syndrome can experience. The Noonan Syndrome Association is the only organisation working for families … Continued

Do you have an Amazon account?

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If you use Amazon at all, we now have a charity account with them. Amazon will donate 0.5% of the net purchase price (excluding VAT, returns and shipping fees) of eligible purchases to Noonan Syndrome Association. You can find details here at … Continued

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

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