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!
Filter News

Jo’s 160 Mile walk for NTUK!
Read Jo's Story as she prepares to take on a 160 mile epic walking challenge for Nerve Tumours UK.
Read More
NF2 & Identity Research Study
If you have NF2, Suzi want's to hear from you! Find out more about her research study relating identity & NF2
Read More
Challenge 100 – Everyone’s invited
Take on 100 of anything you can think of and fundraise to support our NF community!
Read More
A very “Happy Easter” to you all!
A message from Karen, our Charity Director, wishing you all a very Happy Easter!
Read More
Stuart & William’s Story: Turning blue for World NF Month
Check out Stuart & William's creative fundraiser for World Neurofibromatosis Awareness Month
Read More
Coordinated Care of Rare Diseases Study at UCL
Find out the results to the Coordinated Care of Rare Diseases Study at UCL
Read More
Who is exempt from wearing a face mask? UK exemptions rules explained - and how to get a hidden disabilities exemption
Find out the up to date information on face mask rules in your area
Read More
Carers Rights Day. Diane’s Story
Find out more about Diane's life as a carer and how more should be done for unpaid carers in the UK
Read More
NF1 PN Impact on Patients’ and Caregivers’ Lives
If you have NF1 with plexiform neurofibromas or you care for someone with NF1 PN help shape future healthcare support
Read More