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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TSL’s Charity of the Year
Specialist Nurse Tracey Kenyon launches TSL’s corporate funding to introduce NTUK & welcome guest of honour, 2 year old Evie
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Online – Accessibility – We have the tools to help!
The NTUK website has accessibility tools to give you easier access to online & digital content
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My life with Pheo
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Resources Survey: Initial Diagnosis 2023
We received many responses to our survey asking what would you have found helpful after your initial diagnosis
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Community Fundraising Call Out
Calling all community fundraisers - we need your help, please!
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Owen family Awareness Event
The event featured guest speaker Prof. Meena Upadhyaya OBE, Member of our Board of Trustees & Medical Advisory Board
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Running for Wilbur
Tim is running the Guildford 10k in October, to show support to his son Wilbur who has NF1
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Alice’s NF studies
Alice is researching healthcare experiences of individuals with NF1 for her Genetic & Genomic Counselling MSc
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Centre for Appearance Research - The Parenting Toolkit
Research evaluation to find out how effective ‘The Parenting Toolkit’ is at supporting parents of children with NF
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