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Lee’s Santa Dash

09 December 2020

Between the 1st and 25th of December Lee’s aim is to run 100k dressed as Santa on the Isle of Mull! She also has a few elves out and about throughout Mull helping her raise awareness by donning their festive outfits and braving the weather to show their support. As well as raising funds Lee would also like to raise awareness. Mia her daughter was born with Neurofibromatosis Type 1.

"Yup, I hadn’t heard of it either until Mia was diagnosed a few years ago. Mia just gets on with it but there’s no denying it has a massive effect on her life, it can sometimes be really difficult. Very little is known about NF1, even by most health professionals. Nerve Tumours UK provide crucial support to families living with NF1. Without their support, life with NF1 would be even harder. Nerve Tumours UK are campaigning at the moment to raise funds for one more specialist nurse in the UK. I hope to raise funds to help this campaign #OneMoreNurse."

– Lee

If you want to support and sponsor Lee:

Donate

Why not join Lee, grab your Santa/Elf suit and go for a run this December! You can organise yourself as Lee did and set up your own fundraiser or you can sign up to our Virtual Santa Dash which takes place throughout the month of December.

Sign Up

Everyone is welcome! Gather all your friends and family to take on this year’s Christmas challenge, spread joy and happiness to the 26,500 people affected with Neurofibromatosis in the UK.

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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 Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date.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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Michel Kalamarides MD

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

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Eric Legius, MD, PhD, University Hospital Leuven

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

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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

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Gareth Evans, MD, University of Manchester, UK

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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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NF1 Working Together Part 2: 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.

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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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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

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

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

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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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