Helpline 07939 046 030
Freephone 0300 102 17 22*

Shine A Light on NF May 2025

20 May 2025

17 May 2025, World NF Awareness Day

We were delighted to join CTF in the global 'Shine A Light on NF' campaign, our 10th year of collaborating to raise awareness.  

Around the UK and Republic of Ireland, we had 176 buildings and landmarks lit up in blue.

We would like to thank the owners and managers of all the landmarks and buildings that took part in the campaign, helping us to raise awareness and support the 26, 500 diagnosed with NF in the UK.

Please send your Shine A Light on NF photos to info@nervetumours.org.uk

Huer's Hut, Newquay

Thanks to Andy Hannan, vice president of the Newquay Lions for providing the lights and volunteers and also Jon Goodman, Huers Hut custodian.

Local news coverage from the Voice

Mackays Hotel, Wick

Stormont, Belfast

Cardiff Castle

Thanks to Claire for requesting this light up

St James Mill, Norwich

Thanks to Jarrold for lighting up St James Mill & Jarrold Bridge

Jarrold Bridge, Norwich

Tower 42, London

National Wallace Monument, Stirling

National Wallace Monument, Stirling

Lytham Windmill

Meadowhall Shopping Centre, Sheffield

Royal Liver Building

Thanks for the photo Mark

Rochester Cathedral

Flemingate, Beverley, East Yorkshire

Thank you for lighting up for Theo, who has NF1

Sacred Heart Church Wimbledon

Thank you Joe for lighting up the church

Strule Arts Centre

Alexandra Palace, London

High Street Gate, Salisbury

Sir John Barrow Monument, Ulverston

The Deep, Hull

Whittle Arches, Coventry

Thanks for the photo Chloe

Roath Park Lighthouse, Cardiff

Jasmine

Quilter Building, Southampton

Shrewsbury Prison

The Queens Hotel, Cheltenham

New Theatre, Oxford

Spitalfields Market, London

Grand Pier, Weston-super-Mare

Civic Centre, Trowbridge

Thank you Claire for the photo and arranging the light up

New Wimbledon Theatre

Newry Town Hall

National Library of Wales

Vanner Gallery, Salisbury

Waterloo Station, London

Shepton Mallet Prison

Clacton Town Hall

Kildare County Council

Roly's Fudge Pantry, Salisbury

Liverpool Parish Church St Nicholas

Thanks for the photos Mark

Lagan Valley Island

Thanks to Lisa for Shining A Light on NF in Belfast

Leeds City Museum

Hull City Hall

Cavan Courthouse

Christchurch Bridge, Reading

Thanks for the photos Adam

Edinburgh International Conference Centre

Antrim Civic Centre

The Friary, Guildford

Royal Liver Building and Port of Liverpool Building

This photo was taken by Richard Storey Photography on 15 May and shows both buildings who agreed to light up for us in blue

The Hexagon Theatre, Reading

Derry Council Offices

Porters, Mayor's Civic House, Southend-on-Sea

Hilton Park Lane London

Beacon of Light, Sunderland

Ely Cathedral Octagon Tower

Alley Theatre, Strabane

Bristol City Hall

Thank you Charlotte for all the photos

Ipswich Town Hall

St James Church, Louth

Centre:MK car park

Rosyth Parish Church

Thanks Laura & Margaret for arranging this light up

Read Laura's NF1 awareness story

Down Leisure Centre

Somerset County Hall

National Theatre London

Spinnaker Tower, Portsmouth

Camera Obscura Edinburgh

ACC Exhibition Centre Liverpool

Ballyclare Town Hall

Corfe Castle, Somerset

Mossley Mill, Newtownabbey

Ness Bridge

City Hall Clock Tower, Bradford

Renfrew Town Hall

Mersey Gateway Bridge

Pershore Abbey

Bascule Bridge, Renfrew

South Shields Town Hall

Blackpool Tower

Christchurch Spire, Coventry

Southend-on-Sea seafront

Whittle Arch, Coventry

Bridgewater Hall, Manchester

St Mary's Lighthouse, North Tyneside

Mansion House, Dublin

Derby Quad

Thanks Lizzie from Birmingham Children's Hospitals for the photos

Greyfriars Green walkway, Coventry

Union Bridge, Lisburn

The Bridewell, Magherafelt, The Burnavon Theatre, Cookstown and Hill of The O Neill & Ranfurly House, Dungannon

Derbion, Derby

University Hospital Wales Lakeside area

First Direct Arena, Leeds

photo from 2024

Enniskillen Castle

Dublin Convention Centre

Bridport Town Council

Chichester Council House & Market Cross

02 Guildhall, Southampton

Leeds General Infirmary

Barrow Town Hall

ACC Liverpool

Penshaw Monument

Steve Prescot Bridge, St Helens

We would also like to thank all members of the NF community, who helped with the campaign; aranged for buildings to be lit up; lit up their own homes and went out on the streets, in their NTUK T-shirts or with the Shine A Light on NF poster, to raise awareness.

Please send your Shine A Light on NF photos to info@nervetumours.org.uk

Councillor Nicholas Trimble, Lisburn & Castlereagh City Council. "Raising awareness of Neurofibromatosis is key, not just today but every day, for those living with the condition, and for their families.

It's important that they feel seen, heard and supported by their community. We stand with them and encourage everyone to take a moment to learn more and show compassion."

Chantelle, Pembroke Castle

Laura, Dalgety, Scotland

Lisa, Belfast

Charlotte, Bristol City Hall

Theo, Flemingate Shopping Centre, Beverley, East Yorkshire

Jasmine, Cardiff Castle

Kezza, Royal Liver Building

Sian, Huer's Hut, Newquay

Dawn, Tower 42, London

David Perks

Actor, BBC Doctors

Over 400 buildings lit up around the world, with the following countries taking part: USA, Canada, Australia, China, Italy, Thailand & Singapore.

Niagara Falls

via CTF

Science World, Vancouver

courtesy of Tumour Foundation of BC, Canada

Singapore Flyer

Photo Dennis Fajardo for the National Cancer Centre, Singapore

Flinders Street Station, Melbourne Australia

CTF Australia

The map shows all our light ups and the photos we have been sent

use with the download list above

Click here to access the map

Masterclasses in NF: Ophthalmologic Findings & Orthopic Eye Examination in NF1 and NF2-Related Schwannomatosis

Ophthalmologic Findings & Orthopic Eye Examination in NF1 and NF2-Related Schwannomatosis

Prof. Dr. Berthold Pemp

OT Sabine Koinig

Masterclasses in NF: Plexiform Neurofibromas in NF1 - General Course and Neuroradiology

Plexiform Neurofibromas in NF1 - General Course and Neuroradiology

Assoc. Prof. Dr. Gregor Kasprian

Dr. Hector Salvador, MD

Masterclasses in NF: The Patients’ Perspective: A Masterclass on NF Care Held by NF Patients

Masterclasses in NF: Treatment Strategies for Vestibular Schwannomas: When to Treat? How to Treat?

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

 

Michel Kalamarides MD

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

Masterclasses in NF1: 1.Management Of Plexiform Neurofibromatosis in NF1

Rianne Oosterbrink MD

Justus L Groen MD

Karine Lascelles MD

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