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Shine A Light on NF. We are working with organisations worldwide to light up landmarks and buildings in blue for May 17 - NF Awareness Day!

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Shine A Light on NF

Nerve Tumours UK, the leading voice and support network for people living with NF in the United Kingdom, needs your support.

Help us Shine A Light on World NF Day in 2023, as we highlight and campaign for access to the medical and non-medical care that is needed by those affected with NF, the group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN) . 

In association with the Children’s Tumor Foundation USA, we are excited to announce the return of the “Shine A Light on NF” campaign to raise awareness for NF by lighting up landmarks and buildings on World NF Awareness Day - May 17.

We want to raise awareness to help those living with nerve tumours, so they receive the correct support, and to campaign for funding for better services.

World NF Awareness Day falls on Wednesday 17 May in 2023!

We are asking iconic landmarks, buildings & homes to light up blue for NF patients worldwide. We are providing Social Media Toolkits to all willing organisations to showcase why they are lighting up, along with case studies, donation links and many other ways to support patients with NF on the upcoming awareness day. Join us this year on World NF1 Day on 17 May and World NF2 Day on 22 May.  

A special relationship

This will mark the seventh year that Nerve Tumours UK have joined the campaign, reinforcing our continued partnership with Children's Tumor Foundation in the United States. We are very pleased to be part of this excellent, global initiative.

Check out CTF's campaign page

"We are so happy to have been joined by 575 landmarks lighting up globally, last year, across 14 countries, and we want to do even better this year! 204 of those were in the UK alone, so let's keep that tally going! Join in and support our NF Community and make our voices heard!"

– Jay Law, Events and Campaigns Coordinator at Nerve Tumours UK

Take Part! Join the NF Community

Right now we have 160 buildings confirmed to light up on World NF1 Awareness Day, Wednesday 17 May!

(Subject to change)

These include:

The lastminute.com London Eye

City Hall, Bristol

Coventry Centre Fountain, Coventry, West Midlands

The Crucible Theatre, Sheffield, South Yorkshire

City Museum, Leeds, West Yorkshire

Blackpool Tower, Lancashire

The Royal Liver Building, Liverpool

The Lowry, Salford Quays

Beacon of Light, Sunderland, Tyne and Wear

Ness Bridge, Inverness

Guildhall, Swansea

The Swing Bridge, Isle of Man

Armagh Palace, Armagh

Enniskillen Castle

The Dublin Convention Centre, Dublin

We need your help

Support Our Campaign

Shine A Light on NF: Raise awareness of NF by lighting up landmarks and buildings on World NF Awareness Day - May 17.

26,500 people have nerve tumours in the UK. Make sure their voice is not forgotten.  Help us raise £26,500 - a £1 donation for each person that has Nerve Tumours in the UK.

We are very grateful for any support, and donations can be made on the following link. https://www.justgiving.com/campaign/shine-a-light-on-nf

Copy the above paragraph including the linkage and post this to your social media, send it to your MP, local press or anyone you can think of that will support our campaign.

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