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We are Family London Marathon

08 April 2019

Keeping it in the Family 

Gaby White is a remarkable young person – her resilience and spirit in living with NF has inspired a whole group of non-athletes to run the marathon. Read here about their amazing fundraising exploits.

The story starts in 2015 when Gaby’s mum, Helen White, announced she was going to run the London Marathon so that she could raise much needed funds.

Helen’s friend, Emma Price, also got involved. With the support of friends, they raised a remarkable amount for the then named Neuro Foundation, making them the fifth highest fundraisers in the 2016 London Marathon

Their example inspired Helen’s sister, Jane Tillotson

Jane said “I had never run, but just weeks before Helen’s marathon a friend persuaded me to join her at parkrun. Somehow, I struggled round the 5k route.

I watched in awe as my sister ran 26.2 miles in the April Marathon. My friend, Clare Parker, is very target driven and very focussed and somehow between that first 5k and September that year, she had us both signed up to run the 2017 London Marathon in aid of the Neuro Foundation, which because of our love and admiration for Gaby and her amazing family, was a charity close to our hearts. We trained rigorously, often at 6am before Clare went to work. And we did it – running the marathon and raising much needed funds.

Next in this remarkable chain was Jaime Frow.

Having been Gaby’s nanny at the time of her diagnosis, Jaime has remained an integral part of the family.

Jaime had to learn to run, and she recalls, “I always had a marathon on my bucket list, but always said, ‘I’d need a really good reason to do it’, and Gaby was that reason. Simple as that. The thought of the challenges she may face in life put my few hours of pain in to perspective, especially seeing me through the last 5/6 miles when I really struggled to carry on running.”

Gaby and Helen also inspired their friends Barney and Spencer to run and their fundraising included two very funny Murder Mystery evenings held at Helen’s, with Barney and Helen having key roles in the performances.

This year the mantle is taken up by Jane’s daughter, Kate.

Kate said, “I have always enjoyed running and have said for years that when I’m old enough, I will run the marathon. My little cousin, Gaby, and I have always been so close, and it only seemed right to do it for this charity and to raise money for such an important cause."

"I love my cousin dearly and she is the biggest inspiration as she brings happiness to everyone – she is the most bubbly enthusiastic little girl I know. I can’t wait to take part this year! I’ve only heard amazing things about the marathon day from my family that have taken part previously."

– Kate

Jane said, “To others I’d say you cannot imagine how fulfilling it is to rise to what seems like a ridiculous challenge – I still don’t think of myself as a runner and some days that’s very evident, but I have done something that still seems unbelievable.

It is a win-win situation, you will experience no other high like it, and if I can run a marathon, anyone can. Better than that I have made a few more people, including all of my village via our village magazine, who also sponsored us, aware of this debilitating condition and what those like Gaby face on a daily basis."

Jaime summed it up perfectly:

"If Gaby could cope with the day to day battles she faces as an NF sufferer, then I could cope with a few difficult hours. I was even given a medal for it, it seems wrong that Gaby isn’t."

– Jaime

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

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Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

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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

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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

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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

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Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

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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

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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

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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

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Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

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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

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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

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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

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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