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London Marathon 2022

03 October 2022

Congratulations to all our 2022 London Marathon runners!

London Marathon, Sunday 2nd October 2022

The NTUK Head Office team were on the start line, on the course, in the stands on The Mall and then in St James Park to meet & greet some of our runners post-race. The hard work was done by all our runners - it was great to have so many of you supporting the Neurofibromatosis community.

The 2023 race takes place on Sunday 23rd April - join the NTUK team and make a difference to the 26,500 affected by NF in the UK.

Sophie Baulcomb

6:25:09

Philip Hanaghan

6:25:09

Jane Caff

6:52:10

Sarah Cross

4:27:41

Lucinda Godfrey

4:27:33

Sophie Spence

4:27:42

Rosie Benneyworth

5:11:50

Ian Boden

5:27:47

Emma Costelloe

6:20:03

Nicki Custance

5:37:16

Thomas Davidson

4:44:51

Sam Gaden

6:52:17

Wayne Littlewood

3:33:17

Joe Lloyd (right)

4:40:12

Joe Parry

5:02:28

Adrian Maj

5:08:39

David Paddison

4:36:47

Salma Razzaq

5:50:41

James Roe

3:30:24

Garry Smith

5:26:42

Allan Thomson

3:56:41

Jamie Woodland

4:13:26

Hannah Tims

4:23:42

Robert Cowper-Coles

3:41:05

Holly Tillotson (left)

3:46:50

Kate Tillotson (right)

3:48:33

Tallulah Price

5:37:04

Tracy Shaw

5:03:08

Julia Parker (on left)

4:54:29

Yi-Cheng Jan

Jamie Phillips

4:10:16

Join the NTUK London Marathon team for 2023 and raise awareness for the 26,500 affected by NF in the UK

Our NTUK runners aren't short of motivation or inspiration.

Each and every one of our runners has their own reason to run, and personal connection to Neurofibromatosis.

All of them accomplished something great by raising awareness on one of the biggest sports days in the British calendar and the most popular marathon in the world. 

Read some of their stories below

Lucinda

"My daughter was diagnosed with NF1 at the age of 6months. She has been monitored throughout her life by our local hospital but in February 2020 she developed her first neurofibroma in her abdomen quickly followed by another. We were referred very quickly to Guys NF Team and have been under their care since. The care she receives is like a private healthcare service and the level of respect and individualised care she received has left us humbled as a family. I’m aware that the Nerve Tumours Charity has Professor Rosalie Ferner as part of the team and feel indebted to Rosalie, Dr Lascelles, Nerve Tumours Charity and the NF Team for service they provide and continuing to research this varied condition so that my daughter may have a better and brighter future. "

– Lucinda Godfrey

Ian

"I’m doing the London Marathon to fundraise for Nerve Tumours UK as NF1 is a condition my daughter was diagnosed with from birth. Nerve Tumours are a great charity for advice and support for people with Neurofibromatosis. "

– Ian Boden

Sam

"I’m running the marathon to support NTUK - as one of the Specialist Advisors, I know how valuable our services are in offering support - I’m also doing this as part of a personal running journey - only discovered running just over a year ago and didn’t envisage for one minute my journey would take me to the London Marathon - a very personal challenge and I feel privileged to have the opportunity to cross that finish line and be raising the flag and money for a charity very close to my heart - NTUK- Thank you for the opportunity to do this and all the support throughout! "

– Sam Gaden

Wayne

"My training has been horrendous with only 7 weeks available to me. Suffered an injury and kept me out for 5months. I'm running London and then fly out to Chicago 4 days later to run that marathon on the 9th. It's all worth it though to raise money and awareness. "

– Wayne Littlewood

Adrian

"This is my 10th marathon (my 7th London Marathon for NTUK), so as it’s a milestone marathon for me, my niece had carte blanche to chose me a costume to wear, and she chose Elsa from Frozen! So this time I’ll be going as a Disney Princess…"

– Adrian Maj

Garry

"I’m running London Marathon to raise money in memory of my younger sister Natalie who had NF. Natalie died 15 years ago this year aged just 17. She had amazing determination & loved sport so I decided this would be something that will test me and require me to summon some of Natalie’s determination to get the race finished. "

– Garry Smith

Allan

"I have Neurofibromatosis myself, fortunately for me, my NF1 has had very little impact on me apart from a few lumps and bumps but none that bother me. However, I do have multiple neurofibromas throughout my spine and mild incidental compression fractures but I'm not in any pain. I run on a regular basis and as I’m a keen runner I’d thought it would be a good idea to raise some money for Nerve Tumours UK so they can continue providing support and a valuable service for individuals who are more severely impacted with NF than myself. "

– Allan Thompson

Jamie

"My daughter was diagnosed with NF1 when she was 2, she is now 17. She developed scoliosis when she was 10 and 18 months later had to have most of her spine fused as it was changing so quickly. She has spent the last 12 months in a back brace for 23 hours a day as her spine was curving again. I wanted to start fundraising for and raising awareness of NF, as a dad I felt powerless at times to be able to help my daughter Miya so by getting out of my comfort zone and experiencing discomfort, I felt like I was doing some good. "

– Jamie Woodland

Robert

"I am running the 2022 London Marathon to raise awareness of Neurofibromatosis, and help the 26,500 people who suffer from this painful condition."

– Robert Cowper-Coles

Salma

"During the pandemic, Salma couldn't travel from Australia to see her family in the UK & has waited 2.5 years to run the Marathon, in memory of her dad."

– Salma Razzaq

A few more photos from the day to reflect the incredible atmosphere and support for the runners

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