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Noah’s Inspirational Fundraising Story

03 March 2020

Noah was diagnosed with Neurofibromatosis type 2 after being quite poorly when born. Over the years he has beaten the odds and become a truly inspirational individual – helping others along the way!

Noah’s fundraising journey began when he was 7 or 8 years old and he was visiting the Serrenu (sparkle) Children’s Centre in Wales for physio when he overhead people talking about funding cuts.

He was mortified to learn that funding would be reduced for the centre and that many children and young people with disabilities and developmental difficulties would no longer benefit from the vital supportive care, treatment and activities.

From then on he has made it his passion to fundraise for people in need - completing many runs/ walks and bake sales for various children’s charities.

This year is the fourth year that Noah will be running his Easter egg appeal which he has aptly named “Make Someone Smile” – his ethos is that one small good deed is all it takes to make someone smile.

One of Noah’s chosen charities to donate to is Woman’s Aid, Noah selected them after researching and finding out that there are so many children without a place to call home or fleeing violence and finding this very upsetting.

Noah other selected charity he donates to is Llamau. After recently turning 13 and realising that at 16 support for children is dramatically reduced and many youngsters who have had support before no longer have the same support and end up on the street.

NF2 is a very complex condition but not many people are aware of it, we need to improve awareness of Neurofibromatosis type 2 to improve funding for a cure. It’s people like Noah who even though they have the odds stacked against them they remain strong and do incredible things for other people – spreading joy wherever they can!

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Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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