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Megan’s Skyfall

03 September 2019

Megan's Skyfall

EDIT: 

Megan has now completed her Skydive (see photo below). Continue reading however to see Megan's full story detailing her travels with NF.

Having NF is a constant struggle;  whether it be dealing with pain, worrying what people think of the skin tags that are all over my torso or overthinking what the future holds for me.

Since the 15th March 2019 I have been back packing the West Coast, Northern and Central Australia sleeping in a tent for the majority of time and have had the most wonderful time, even with the back, knee and hand pain I struggle with some days.

I have been telling everyone I meet about this condition and how it affects me and others, how I have changed my diet to be a more natural, plant based diet in order to try to stem the growths and how Nerve Tumours UK help us all through information days, research, support centres and raising money to allow for more NF nurses across the country.
I have received nothing but love, support and curiosity from these wonderful people I have met and each person wondering why they have never heard of it before.


I'm now on the East coast where I have the opportunity to finally tick sky diving off my bucket list and in the most beautiful setting of Airlie beach

Having already written articles for The Sun and The Mirror newspaper and with my cousin running the Birmingham 10k it's now time to do something to myself to raise more money and awareness for our wonderful charity.

15,000 ft isn't that high right?  

Megan having after completed her Skydive!

Support Megan on her skydive

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2019 NF Conference

Find out more about the 2019 NF Conference being hosted by our friends across the pond the CTF

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Kate Swallow’s Fantastic Fundraiser at the Tipsy Pig

Find out more about the succesful and throughly enjoyed charity music event hosted by Kate Swallow at the Tipsy Pig

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Support Specialist: One of Many Cases

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Thank You James Gamble!

James Gamble just completed an incredible fundraiser in which he has cycled a total of 980 miles for NTUK! Find out more here

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Wass’ Everyday Battlers 10K Stratford Run

Wassim is running the 10K Stratford Run for Nerve Tumours UK. Here he explains his reasons as to why:

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Megan’s Skyfall

Megan is undertaking a sponsored skydive for NTUK as part of her travels! Find out more here

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Glen’s Half Marathon in Support of his Nephew Freddie.

Have a read about the special young boy who has inspired his uncle take on the New Forest Half Marathon

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Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

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Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

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Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

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

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

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Gareth Evans, MD, University of Manchester, UK

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David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

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Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

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

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

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

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Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

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Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

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Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

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Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

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Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

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Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

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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Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK