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Fun-Raising

09 September 2020

Over the past few months, we have kept our services operating on a business as usual service as best as we can to support you, our NF community.

But now we need to ask you for help. As you know Covid19 has led to many fundraising events like; The Great North Run, Prudential Ride and The Asics London 10K to be cancelled. These events generate the majority of donations for us and without them our income streams have been totally depleted.

That’s why we’re asking you to get out there and fundraise for Nerve Tumours UK. After this long lock down getting outside and putting the Fun into Fundraising will help us and the community immensely. However small your activity may seem, any donations you raise will help to support you, our community and our specialist Neurofibromatosis network - The Helpline, our nurses, Information provision .......you name it.

It’s time to get creative and plan your own fundraiser. If you are yet to decide on how to get involved, we’ve got lots of great ideas for you; GoSober in October, Movember, Christmas collections, Sponsored Walk, Virtual Challenge, Game for Good, Picnic in the Park, Coffee Morning, Online Quiz, Donate your commute, Hold a Masterclass, Loose Change.

GoSober

Go Sober, get sponsored to become booze-free for an entire month!

Movember

Grow your mustache for Neurofibromatosis

Sponsored Walk

Get sponsored to walk a distance of your choosing! Team up with the family or trek solo and complete any distance you want. Set yourself an epic trek to complete over a week or walk a shorter distance in one go.

Virtual Challenge

Get sponsored and take part in one of our Virtual Challenges! Climb the highest mountain, join our cycling gang or run your own marathon! Head over to our Virtual Challenge Hub for inspiration.

Take Part

Game for Good

If you love gaming why not host your own livestream and get sponsored. Set yourself a goal of gaming for 12 hours or even 24 hours and get people to donate.

Coffee Morning

Host a virtual coffee morning and have a much needed catch up with your friends and family. Get them to donate the cost of a coffee to take part.

Online Quiz

Become a virtual quiz master for all your friends & family and charge an entrance fee to take part!

Donate your commute

Many of us are working from home right now. Why not donate the money you may be saving on your weekly commute.

Hold a Masterclass

Turn your favourite hobby into a live stream virtual masterclass in exchange for donations. From yoga to baking to knitting – people always want to learn, especially from friends!

Loose Change

Got a jar of loose change sat on the shelf and wondering what to do with it? Cash it in and donate it!

If you have your own fundraising idea or have been inspired to start one of the above fundraisers. Go to our fundraising hub today and help us get back on track.

No matter how small the donation, every pound helps keep our services running as normal.

If you aren’t able to run a fundraiser you can donate directly to support us below

Contact us directly with your fundraising idea or if you have any questions info@nervetumours.org.uk. We can provide fundraising material and cater for your needs 

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Tate’s Shine A Light Bikeathon

Tate's 4th NTUK fundraiser was a Shine A Light Bikeathon, having learnt to cycle in just 3 weeks!

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Access to your GP

We want to hear from you… Help us improve services by completing a quick survey

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London Marathon 2024 Team NTUK

Thank you and congratulations to Team NTUK for their marathon effort

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Thomas’ NF1 story

Thomas describes growing up with NF1, supporting Liverpool FC and taking on challenges with support from his wife

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Meet Jessica, new Specialist NF Nurse

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Rare Disease Day 2024

Read our update on the events and meetings NTUK attended to help raise awareness of NF

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Johnathan’s story

Johnathon's family are spreading awareness of the importance of attending health checks and advocating for vulnerable people

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Jen’s NF1 story

Jen praises the great support received since her NF1 diagnosis, allowing her to thrive & achieve a 1st class degree.

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Charlotte & Evie’s story

'Sticker Queen' Evie is 4 years old and was diagnosed with NF1 after tests for a 'lazy eye'.

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

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

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

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

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

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

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

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

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

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

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

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

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

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

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

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 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

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

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

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

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

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

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. 

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

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

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

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

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

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

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