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
Meet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
Read MoreWorld 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 MoreCAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read MoreOliver Bromley’s NF Story
Oliver Bromley, with NF1, was asked to leave a restaurant due to his appearance, sparking a call for greater awareness and ed
Read MoreNF Academy 2023 - Ella’s Blog
Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe
Read MoreUniversity of Manchester Research
Read about the latest PHD research, involving Nerve Tumours UK, at the University of Manchester
Read MoreNew Research Study for Children and Young People with NF1
Find out more about the study and how you can participate here
Read MoreNeurofibromatosis Type 2 name change
The new name for Neurofibromatosis Type 2 is NF2-related-Schwannomatosis (NF2)
Read MoreJensen’s NF1 story
Stuart describes Jensen's first days post birth, subsequent diagnosis of NF1 plus his & wife Claire's hopes for his future
Read More