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Andrew’s NF1 Story

01 June 2021

My name is Andrew, I was first diagnosed with Neurofibromatosis when I was born. As a result of NF1, I have a curved spine and have been diagnosed with dyslexia. Ever since I was young, I’ve had regular visits to a specialist hospital where I received checkups and physiotherapist sessions. Because of my curved spine, I have suffered from lower back pain from a young age.

I did struggle at school particularly in Maths and English. This became more of a challenge in a secondary school as the pace of learning increased and I found it hard to keep up with my friends. That said, I really enjoyed subjects such as PE & History. After school, I wasn’t entirely sure what I wanted to do. Most of the male role models in my family are in the armed forces, so I decided to join. I did this for 1 year but was told that this wasn’t going to be an option for me. As I had always enjoyed PE at school, I decided to go to college and study sport. I did four years of studying which enabled me to go to university.

Getting into university was one of the biggest achievements in my life so far, I never expected to be accepted onto a course let alone graduate. I studied a BA Honours in Coaching & Physical Education at Marjon University, graduating in summer 2014. University was great! I made a lot of friends and shared a lot of experiences with some really great people. I was fully supported throughout my journey by amazing friends, lecturers and the student support team.

I am now working as a Learning Support Assistant at a secondary school and have put together an assembly to present to the children and members of staff about Neurofibromatosis. It is important to me to raise awareness of what NF is and how it affects the lives of people with it and other nerve-related illnesses & disabilities. I also want to show that just because you suffer from a condition it doesn’t mean that you can’t achieve things in life.

Outside of work I do quite a bit of football coaching and am a qualified level 2 coach. I really enjoy this and have been doing this with Marjon Football club since my second year at university.

Through coaching I have been able to volunteer at Plymouth Argyle Football Club for a number of years within their centre of excellence.

I have recently set myself a challenge to run the Plymouth 10K – in September 2021. I will be running to raise money for Nerve Tumours UK and help to raise awareness about Neurofibromatosis.

"As I have spoken to friends, colleagues, fellow football coaches and the players that I coach and they had never heard of the condition. I want to complete the challenge as fast as possible; running is something I have never really liked or enjoyed doing but it will be a good achievement."

– - Andrew who has NF1, Qualified Level 2 Football Coach, Volunteer at Plymouth Argyle Football Club, Learning and NTUK Advocate

By openly talking about my struggles with NF1 throughout my life I hope it will connect with others in a similar position to me. You can overcome challenges in life and succeed in your goals; like I did going to university & becoming a football coach. I want to act as an inspiration for others that may be struggling and realise that they can do it too!

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Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

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Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

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Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

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Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

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Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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