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Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith

24 September 2021

In this day and age any excuse for a celebration is a good thing and remaining on this planet for three quarters of a century seems like a good one!

I am celebrating in several ways including a challenge:

I am going to do a wing walk in memory of my daughter, Sarah Long (1973 -1998) who was diagnosed with Neurofibromatosis Type 1 (NF1) soon after she started school, and to remember my father Keith Landers Boon (1913-1996). Known as ‘Dan’ to many he was a pilot for a number of years and passed away just a few months before my half century. He didn’t have NF.

I think both would approve of my challenge.

My father flying up the Red Sea in a Wellington 1943

Sarah with my father when she was two

Reflections: My family's experience with Neurofibromatosis and Nerve Tumours UK over the years

At the time when Sarah was diagnosed there was no special nurse or national support available. Sarah didn’t have access to such help.

The charity - known as the Neurofibromatosis Association when Sarah passed away - had not been formed when she was first diagnosed. 

Most people had never heard of it and the only information available to us was a list of technical medical notes on two sheets of photocopied paper, given to us by a paediatrician. They meant nothing to us.

Teachers knew nothing, her friends knew nothing and this made Sarah’s life very difficult for her as she grew up. She was not very visibly affected as most of the progression of the condition was going on way beneath her skin.

Sarah’s medical problems really started when she was at university and living in Brighton. She began to find walking difficult and had pains at night. They got worse over a period of nearly three years. Sarah saw five different doctors during that time and none of them would believe it was anything to do with NF.

Eventually, when she was in her first full time job, and she could not sleep at all at night and it was affecting her work, she phoned the specialist advisor in Guys Hospital who advised her to get a referral from her doctor. At first he refused but eventually gave in after she left his surgery in tears.

Within a couple of weeks, in August 1997, Sarah had two sizeable nerve tumours removed from her sciatic nerve in her thigh and calf. They were found to be malignant. The operation damaged the sciatic nerve and she lost all feeling in her lower leg and foot. This was never regained and she had to wear a splint.

During the next few months she was back and forth between work and hospital and was told in January 1998 that the cancer had spread to many organs in her body and there was nothing else that could be done.

Sarah passed away on 14th March 1998 aged 24.5 years – the evening before her sister’s 21st birthday.

Sarah was a Christian and had strong Christian beliefs and this enabled her to cope with the situation. She believed that God could cure her and if he didn’t, then he had another purpose for her.

We do not have any family history with NF and her case occurred totally out of the blue. Her passing has changed all our lives and I think every day that if more had been known about NF all those years ago, she might be alive today.

Please help me bolster their support.

I want every area in the country to have a specialist nurse and there are some big gaps.

If Sarah had such access I believe that she could have been alive today.

The charity has come such a long way. Please help it to expand more so that every family affected by NF can have easier access to an appropriate care package and will be properly looked after.

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