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TSL’s Charity of the Year

08 September 2023

Thanks to Topek Southern Ltd for making us their Charity of the Year.

Follow in their footsteps and consider us as your Charity of the Year for 2024. For further information, please contact fundraising@nervetumours.org.uk

Read how they supported the NF Community and Evie throughout 2023.

Topek Southern Limited, a building envelope construction specialist, chose Nerve Tumours UK as their joint charity partner for 2023, in support of their Technical Director, Dan, whose 2-year-old daughter, Evie, received an NF1 diagnosis in 2022.

The TSL team are endeavouring to raise awareness of NF1, whilst at the same time raising funds for Nerve Tumours UK, which will be used to support the regional services in Hampshire, Wiltshire, Dorset and the Isle of Wight. NTUK Specialist NF Nurse, Tracey, is supporting Dan, his wife Rachel, and their daughter Evie.

The company kickstarted their fundraising campaign on May 15, ahead of World Neurofibromatosis Awareness Day, with an internal launch, at which they invited Tracey to join them. Tracey informed the team about NF1 and how NTUK’s work supports people living with NF and their families. They were joined by Dan’s wife, Rachel, and the guest of honour, Evie.

The team has a series of events planned, to support their mission, including running the Yorkshire Marathon. They have already completed a few of their listed challenge events, including the Great South Run, Three Peaks Challenge and RideLondon-Essex 100 mile cycle ride.

Team TSL completed the Three Peaks Challenge to support Nerve Tumours UK

The team made the incredible effort to complete...

all 1,345m of Ben Nevis,

978m of Scafell Pike

and 1,085m of Snowdon, which is a total of 23 miles.

They reached the summit of the final mountain, Snowdon, just in time for sunrise and witnessed some breath-taking views.

TSL team at the Great South Run

We were SO lucky with the weather, cold but lovely and sunny

All well – we all finished near enough at the times we hoped for

"On the Three Peaks Challenge: It was definitely a trip to remember. Our knees ached and we were shattered, but we did it, and saw some incredible views. We survived some curve balls too, a few injuries, a wrong turn, and a couple smashed wing mirrors on the minibus, but we made some amazing memories."

– Team Captain and Commercial Director Connor Hounsell

Follow in TSL's footsteps and consider us as your Charity of the Year.

For further information, please contact fundraising@nervetumours.org.uk 

Meet Evie

Evie was diagnosed with NF1 in November 2022, shortly after her second birthday, after her café au lait spots were noticed by chance. Evie’s optic nerves are affected by tumours which has significantly impacted her eyesight. She is currently undergoing chemotherapy to stunt the growth of the tumours to protect her eyesight from further deterioration.

Evie has always been so energetic and is such a character. Luckily, the type of chemo that she is on is a non-aggressive form and she continues to be her charismatic, happy self

Now 2 and a half, she has taken the treatment in her stride, proudly calling her chemotherapy line her ‘magic button’.

Evie was referred to Tracey, via Southampton General Hospital following her diagnosis, to benefit from specialist care. Dan says: “At first, Tracey educated Rachel and I on NF1 as we had never heard of it before. She offered an open forum for us to ask questions and properly understand Evie’s diagnosis. She’s been a great support to us all and she is the one constant in the middle of numerous hospital appointments and treatments. She met Evie for her first annual review and since then calls regularly to check on Evie, and to see how Rachel and I are doing. We’re so grateful that we can contact her with questions as Evie grows.”

In the future, Tracey will be a part of Evie’s schooling by educating her teachers and care givers about NF1 so that they have the knowledge to support Evie and understand her needs.

Evie is now one treatment away for being a quarter of the way through her chemotherapy journey.

“She continues to tackle every round with infectious smiles, chatting to all the staff and patients on the ward at each visit."

"We are awaiting her results of her MRI, which is her first since starting her chemotherapy, to see how treatment is going. She is very much looking forward to visiting Cinderella’s castle in September when we take our family trip to Disney World.”

Meet Tracey

We are exceedingly lucky to have a Specialist NF Nurse on the Nerve Tumours UK team with Tracey's background, knowledge and experience.

Tracey Kenyon, Specialist NF Nurse

She initially trained as an Adult and Paediatric Nurse, and after many years in Paediatric Nursing, building up a wide and diverse range of experience, she then moved into Health Visiting, before moving into Child Development and Disability Services, initially as a Specialist Health Visitor and latterly as a Nurse Consultant.

Tracey then decided to change directions and moved into teaching nursing, and medical students before then moving again to work for the Department of Work and Pensions supporting and training staff on working with young people with disabilities.

During lockdown, amidst working from home, Tracey realised that she wanted to return to working with people, and luckily for the NF community, she joined the team, in a post jointly funded by NTUK and the Specialist NF2 Service. She is based in the Wessex Clinical Genetics Service at the Princess Anne Hospital in Southampton, and looks after approximately 1000 patients with NF1, NF2 and Schwannomatosis across her region, which encompasses Hampshire, Dorset, West Sussex (part), Wiltshire and the Isle of Wight.

Tracey is also Vice Chair of the Community Practitioners & Health Visitors Association and provides invaluable insight into working with one of our target audiences, as these healthcare professionals are sometimes the first point of contact for children with NF.

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