Billy & Logan’s Story
02 July 2020
This is me Billy and my son Logan.

We both have NF1 but we don't let it stop us!
Logan is a squad member for the England Karate squad, as well as being a member of the kickboxing & Brazilian Jiu-Jitsu squads. He is also an avid runner. Logan only suffers midly with NF1 but does have mild hypermobility associated with it.
I myself was diagnosed with NF1 at 7 years old. I have undergone many surgeries, around 15-20 surgeries in total of the head, neck and left ear area to remove plexiform fibromas and associated problems that go with them. I try not to let it stop me too much and last year I was able to run both Brighton and London marathons in the space of 2 weeks.
The hardest part was the fundraising for sure!
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Rare Disease Day 2025
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William & Andrew’s NF1 Story
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First Diagnosis Survey
A survey to improve NF diagnosis support by gathering feedback on early experiences and concerns from those affected.
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Working with the hospitality industry & creating safe spaces for everyone
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Visible Differences: Changing The Narrative
Nerve Tumours UK joins multi-organisational workshop to enhance support for those with a visible difference
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Repurposing anti-retroviral drugs to treat NF2 related tumours Retreat Study
Join a brand new study treating tumours in NF2 patients.
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Nerve Tumours UK joins the Neurological Alliance of Scotland
Nerve Tumours UK joins the Neurological Alliance of Scotland.
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Brain scans to give crucial insight into childhood genetic disease
New funding secured for exciting new global research initiative.
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