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Everybody is born a Champion

17 May 2024

Nerve Tumours UK have again joined forces with RBH Creative Communications, for a third successive year, to raise awareness of NF, via a new digital media campaign, featuring GB Para-Sprinter Thomas Young, MBE. Thomas has NF1 and has agreed to be Patron of Nerve Tumours UK.

The first part of the two tier campaign will run across 27 rail hubs from 16 - 22 May, covering both World NF Awareness Days.

The second blast will be scheduled towards the end of August, with dates to be confirmed, to co-incide with the 2024 Paralympics, being held in Paris, where Thomas will defend his T38 100m Paralympic Title in the Stade de France, on Saturday 31 August 2024.

#MakeNFVisible

Thomas was crowned Paralympic T38 100m Champion at the Tokyo Paralympics in 2021, breaking the European Record in the process. He has won Paralympic Gold, World Silver in 2019 and three times been crowned European T38 100M Champion. In 2022, he was awarded an MBE for his services to Athletics.

Thomas is facing one of the most challenging years in any athlete's career. He is racing for the T38 100m Title at the Paralympic Athletics World Championships 2024 in Kobe, Japan on the 17th and 18th May and is also in training to defend his Gold Medal at the the Paris 2024 Paralympics Games this August.

Awareness Campaign

Nerve Tumours UK is the leading voice for people living with NF, the medical group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN); RBH is a West Midlands-based creative communications agency.

Thomas Young (Photo credit: George Tewkesbury)

"Over the last two years, we have used the digital campaign to firstly highlight the condition and NTUK support services, followed by the problems faced by the whole NF community.

However, this year, I wanted to change the angle of the campaign, as I feel it is also extremely important to celebrate those living with NF, and their achievements. We need to show that you can achieve your potential, with the right support, and in this we are absolutely delighted to be collaborating with Thomas Young, who has proved that very point.

I was absolutely delighted by the many positive responses about the campaigns from passengers as they passed through the various rail hubs over the last two years, and very much look forward to seeing the impact of this year’s campaign.

My thanks must go to Thomas for being so willing to work with us, and to spearhead this campaign. "

– Karen Cockburn, Charity Director

Proud to help raise awareness

"We at RBH are so proud to be supporting Nerve Tumours UK as their marketing partner for the third consecutive year. The work they do for people with NF is vitally important, and we are committed to helping raise awareness of this little-known condition.

This year’s campaign has focused on building the profile of the remarkable Thomas Young – a Paralympic sprinter with NF1 (Neurofibromatosis type 1) – who has recently become a Nerve Tumours UK patron.

Our hope is that this campaign goes a long way in bringing both Nerve Tumours UK and Thomas Young front of mind among the general public, especially with Thomas currently in training for the Paris 2024 Paralympics Games, which start in August."

RBH Creative Communication - who dares to care https://rbh.co.uk/

Community Feedback and Reach

The May 2023 campaign across the ten rail hubs reached a footfall of 5,307,924 and the November 2023 campaign reached a footfall of 5,029,631, giving a total reach of 10,337,555 across the whole campaign.

This year, we are advertising at 27 rail hubs, increasing our geographical reach across the country and so expect a far greater footfall.

Feedback from the previous campaigns, from the NF community and medics, was extremely positive. However, we still need to push the message.  

Knowledge of the condition helps to reduce stigma and prejudice and supports the NF community.

Awareness Campaign

Click this link for the exact locations of our digital poster campaign

NTUK rail hub poster locations

The campaign featured on billboards at these railway stations: Ashford International, Bicester Village, Birmingham New Street; Bristol Temple Meads, Cambridge, East Croydon, Edinburgh Waverley, Exeter Central, Glasgow Central, Leeds, Liverpool Lime Street, London Blackfriars, London Bridge, London Cannon Street, London Charing Cross, London Kings Cross, London Liverpool Street, London Paddington, London Victoria, London Waterloo, Luton Airport Parkway, Manchester Piccadilly, Nottingham, Oxford Parkway, Reading, Sheffield, Stansted Airport

Share our awareness campaign social posts - tag @nervetumoursuk and @thomasyoungt38 with #ShineALight2024 in your posts

A special thank you to Alexion Pharmaceuticals UK, JCDecaux, Network Rail and Yaura Agency for their continued support.

Location photos 2024

The NTUK Head Office team meet Thomas' team

at London King's Cross Station

Thomas Young

Sheffield

London Waterloo

London Blackfriars

London Bridge

London Charing Cross

London Cannon Street

London Victoria

London Liverpool Street

Transpennine Express hosted an awareness event on 17 May, World NF Awareness Day, at Huddersfield Railway Station.

Station Manager Angie Hunte said: “We’re really proud to be able to support such an important cause. I didn’t know much about NF until we decided to participate in the event, so it’s already raised awareness to one new person!"

The TPE team raised awareness by handing out NF information leaflets, offering cakes and having a chat with anybody coming to see the station windows lit up blue.

Kristina Novakovic, a conductor for TransPennine Express who lives with Schwannomatosis, said: “I’m really grateful for TPE raising awareness to a cause I have first-hand experience dealing with.

Do you want to learn more about NF?  

Email us: info@nervetumours.org.uk 

We are here to explain, advise and support you.

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