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!
Filter News
Today is Giving Tuesday
Call out by Karen Cockburn, Charity Director, to donate and support the NF Community
Read More
Runderpants fun run
Get your Runderpants here! Set up a fun run wearing some special fundraising pants
Read More
Avastin Side Effects
Jo highlights Avastin side effects, from experience of her son Oscar's treatments, plus shared testimonies from others
Read More
Meet Sarah, our new Specialist NF Nurse
Sarah will be based in Leeds, supporting families across Yorkshire and the Humber region.
Read More
Olivia’s NF1 story
Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses
Read More
2023 Awareness Campaign
Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.
Read More
Disclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebeca Rennison
Read More
Jo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
Read More
World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
Read More