Billy & Logan’s Story
02 July 2020
This is me Billy and my son Logan.
![](/images/common/Billy-Logan-NF1-Story-NTUK-1024x768.png)
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
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Rare Disease Day 2023
NTUK joined in with Rare Disease Day 2023, helping raise awareness of how better coordination of care can improve lives.
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Ashley’s NF1 story
Ashley loves red pandas, he's a 32 year old IT Specialist and has NF1. He is running a half marathon to raise NF awareness
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Guy’s & St.Thomas’s Monthly Care Awards
NF paediatric nursing team, Mandy and Katrina win the Guy’s and St Thomas’ Hospital November CARE Award 2022
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK__gov_logos_370x280_800_600_s_c1.jpg)
Cost of Living Crisis - Initiative
NTUK have co-signed an open letter to the Chancellor of the Exchequer on the cost of living
Read More![](https://nervetumours.org.uk/images/made/images/common/Guys_and_St_Thomas_Foundation_Trust_logo_370x280_800_600_s_c1.jpg)
Guy’s Hospital NF Centre Coffee Meetings
Guy's Hospital Neurofibromatosis Centre Coffee Club 2024
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Living with NF1: psychological impact & experiences
Research: Understanding the reality of the NF1 journey from diagnosis to daily life, and the emotional impact it has
Read More![](https://nervetumours.org.uk/images/made/images/common/Kian_NF2_Blog_image_9_preview_800_600_s_c1.png)
Kian’s NF2 Blog
Kian shares his NF2 journey and his inspirational path - training to swim in the para-olympics
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