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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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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 Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date.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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Masterclasses in NF: Ophthalmologic Findings & Orthopic Eye Examination in NF1 and NF2-Related Schwannomatosis

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Treatment Strategies for Vestibular Schwannomas: When to Treat? How to Treat?

 

Michel Kalamarides MD

Masterclasses in NF: Management Of Plexiform Neurofibromatosis in NF1- Rianne Oosterbrink, Justus L Groen, Karine Lascelles

Masterclasses in NF1: 1.Management Of Plexiform Neurofibromatosis in NF1

Rianne Oosterbrink MD

Justus L Groen MD

Karine Lascelles MD

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

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Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

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Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

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

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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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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

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Eric Legius, MD, PHD, 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.

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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.

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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

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

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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

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

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

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

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

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

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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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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