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Stitched up by Celia

28 January 2021

Celia, from the Scottish Highlands, continued to support Nerve Tumours UK throughout lockdown with her unique handicrafts, selling her products online.

Follow her example and get creative with your online fundraising ideas – who knows what incredible ideas you may come up with!

In her own words "My 10-year-old granddaughter was diagnosed with NF1 as a 14-month-old and the family became aware of Nerve Tumours UK from the beginning. When I retired in 2015, I realised I had more time to indulge my passion for sewing and knitting, but would soon have kitted out all the family with things they probably didn't really need, so I decided to make things for charity, and Nerve Tumours UK seemed the obvious choice.
 

I just make what I feel like as I sew and knit for pleasure...

I do not sew and knit to order as I don't want to put myself under that pressure. Selling is not easy up here in the Scottish Highlands and I have, in the past, had stalls at community markets and Christmas fairs. This was not possible in 2020, so I decided to try to sell through my Facebook page which proved more successful, though not so much fun!

I am hoping to sustain my output so, hopefully, there will be another donation for 2021!"

If you have any fundraising ideas, please contact us info@nervetumours.uk or have a look at the following.

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Participant Experiences of the 100,000 Genomes Project

Read more about participant's experiences of partaking in the study that sequenced 100,000 genomes from around 85,000 people

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Meet our ASICS London 10k runners

Good luck to all our runners taking part in the British ASICS 10K this Sunday!

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Quantitative MRI Application being developed to help prevent vision loss in NF1 patients

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Nerve Tumours UK Dolphins Family and Friends

Our new fundraising hub has it's first fundraiser! Find out more here:

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Ruby Galloway (NF1) is thrown an incredible sleepover!

Ruby Galloway receives her own incredible sleepover after being nominated by nearly half of Plymouth! Find out more here:

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Jonny’s Story

Jonny has chosen to open up and share his incredibly brave battle with Cancer over the past year, find out more here:

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James on Tour

James Wiggin is taking on the Tour de France on behalf of Nerve Tumours UK – or at least a part of it.

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Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the National NF1 Meeting in Manchester

Have a read what was talked about at this year's National NF1 Meeting in Manchester

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Let’s Go Regional/ Let’s Go Outside

Read about the website that offers new exciting opportunities to help you find a fundraiser/event that is most suited to you

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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.

Website by Optima.

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OT Sabine Koinig

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

 

Michel Kalamarides MD

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Rianne Oosterbrink MD

Justus L Groen MD

Karine Lascelles MD

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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

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

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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

NF2 Working Together: from a tentative diagnosis and beyond

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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.

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

Masterclasses in NF: Surgery in NF2

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: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

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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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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