Reflecting on World NF Awareness Month 2026
03 June 2026
Now World NF Month 2026 has ended, it's time to look back on all of the fantastic fundraisers and events. Here are some of the highlights from this year!
Our Community
We would like to say a big thank you to our community for your continued support in helping us raise awareness and support for the 26,500+ children and adults with NF.
Check out some of the stories from our community below!
Laura's fundraising for Shine A Light 2026
Laura, who has NF1, and her mum Isabel, raised money for NF awareness through the March Craft Fayre, 17 May cupcake sale, plus a soup & pudding lunch at Dalgety Church in August.
Find out more
Ralph's school had a non-uniform day to raise awareness
"We are so proud of how resilient and strong Ralph has been throughout this entire journey."
Ralph's NF1 story
Genn's church took part in our #DoSomethingBlue challenge
"Living with NF for 21 years has taught me not to let fear or anxiety define me. Instead it has inspired me to advocate for my condition, raise awareness and encourage others facing similar challenges."
Genn's story
Kai and Briony's story
"We are a family of three who are neurodiverse. We always overcome every obstacle that comes our way."
Kai and Briony's story
Evie's mum and brother fundraised by doing 5k a day in May
"Evie is a sassy, happy, wild child who brings joy to every day and to everyone she meets. She’s loud, chaotic and has surplus energy but lives life to the full."
Evie's NF1 story
Beth shared a fact a day on her YouTube channel
"I hope that through my podcast, I can continue to spread awareness of Neurofibromatosis and support those who are navigating and trying to better understand the condition and become more informed."
Beth's story
NF2 in the spotlight
22 May is World NF2-related-Schwannomatosis day. Check out some of the stories from our NF2 Community below!
Emily's poem
World NF2 Day. No Bell Prize, a poem by one of our ambassadors, Emily Owen.
Read Emily's poem
BSL course places for those with NF2
As part of our World NF2 Day celebrations, we announced that we have some free places available for members of the NF2 Community to study and learn British Sign Language (BSL) online.
Find out more
Reece's story and Charlotte's 50k in May fundraiser
"Genes are the foundation of development, but do they define us? Does NF2 define us? Absolutely not! And I’ll tell you why… "
NF2 and Us - Our Story
Fabulous fundraisers
We are 100% funded by voluntary donations and rely on our incredible fundraisers to help us continue providing support and advice to people with NF. You can find out about some of their fundraising efforts below.
Mel, one of our Birmingham nurses, is swimming a marathon!
"I'm supporting Nerve Tumours UK because their mission means a great deal to me. They provide crucial support to people living with the Neurofibromatoses, the conditions that cause nerve tumours."
Mel's JustGiving page
Dion ran the Plymouth Half Marathon
"I am running for my brave niece. She is currently fighting a large, inoperable plexiform tumour in her arm. Watching her navigate the condition that has no cure is my ultimate motivation. If she can face that every day, I can certainly tackle 13.1 miles."
Dion's JustGiving page
James ran 100km in the London 2 Brighton Ultra Challenge
"My sister Ellen lives with neurofibromatosis, NF1. It is a condition that brings challenges most people never see yet she still lives life to the full. She’s funny, stubborn, brave and refuses to let NF define who she is."
James' JustGiving page
Ellie Horstmann ran a half-marathon for her cousin's daughter, Lily Blackburn
"Lily has undergone countless medical exams and brain surgery to try remove some of the tumour behind her eye. The battle will be life-long for her but she is an absolute super hero and bounces back after every hospital visit as if it is nothing."
Ellie's fundraiser
Inspired to take part in a fundraiser? Check out our Challenge Hubs to find your perfect challenge!
'What Is Neurofibromatosis?' campaign
This year was our fifth year partnering with RBH Creative Communications to raise awareness of NF via a digital media campaign, showing billboards that asked the simple question: 'What is Neurofibromatosis?'
"The visual heart of the campaign is an illustration of the human nervous system. To represent the often-invisible reality of chronic pain associated with the condition, the artwork features a ‘glowing’ animation that pulses at the nerve endings. The intention of this glow is to spark curiosity and empathy in passers-by." RBH Creative Communications
The campaign ran from 16-23 May across 24 rail hubs, covering World NF Awareness Day (17 May) and World NF2 Day (22 May)
Pictured: Clemence (left) and Sarah (right) in front of our campaign billboard at Edinburgh Waverley Station.
View the full campaign
Shine A Light 2026
This year marked our eleventh year collaborating with Children's Tumor Foundation (CTF) to raise awareness about Neurofibromatosis. A record-breaking 400 locations lit up worldwide on 17 May for World NF Awareness Day, with 230 of those being in the UK and Ireland.
Many iconic buildings lit up in blue!
You can view more photos of light-ups by clicking the button below.
See more light ups
The Importance of World NF Day
and World NF Awareness Month May
Every May, the NF Community comes together to recognise World NF Awareness Month, a time dedicated to raising awareness, support and hope. Nerve Tumours UK has supported the 26,500+ children and adults diagnosed with Neurofibromatosis in the UK for over 45 years.
Read some of our community's reflections on the importance of our services by clicking the button below.
Thank you to everyone who helped raise awareness and Shine A Light on NF in 2026.
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