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All Aboard the Blatchington Branch Fundraiser for NTUK!

19 July 2019

All Aboard the Blatchington Branch Fundraiser for NTUK!

Martin Murdoch has just completed one of the most unique fundraisers we have ever seen! 

Taking part on the Blatchington Branch "a privately owned 5 inch gauge garden railway in East Sussex" built by Martin himself, was opened to the public where people could donate money in return for riding the rails with Martin at the helm!

Track plan of the Blatchington branch

Martin has raised a considerable amount of money for NTUK and we would all like to thank him for his efforts and also congratulate him on completing such an impressive project!

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Becky’s Story

From dealing with her family's NF1 to improving her fitness and running marathons, have a read of Becky's amazing story here:

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Beth’s “Novaspers Online Dog Show”

Find out more about Beth's online dog show here:

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“Charity Shave Off” for NF in Northern Ireland

Janice and her family recently held a charity shave off in Northern Ireland. Find out more about the event here:

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Blackpool Magic Convention 2020

Find out more about the convention in aid of NTUK and how you can get involved here:

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Reflections on 2019

Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:

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Helen’s Story as told by her Mum Pauline

Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:

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Nicola’s NF2 Journey

Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:

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Making the Future of Work inclusive of persons with disability

Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace

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The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing

Find out more about the debate recently undertaken at The Royal Society here:

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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: 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

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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

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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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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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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

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

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Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

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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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