Helpline 07939 046 030
Freephone 0300 102 17 22*

The One Show Year Book in Lockdown

30 June 2020

This year so many children who should have been finishing their final year at school or taking their GCSE’s cannot celebrate with a leaving ceremony. The One Show @BBC has decided to put together a nationwide yearbook for all the students who should have graduated so they can celebrate their hard work. Jacob & Ella, who both have NF1, are part of that launch. 

Jacob's story as told by Mum, Nicola

Jacob was diagnosed with NF1 shortly after birth as myself and his older brother Tom are affected. Naturally we were looking out for signs of NF1.

Jacob has bilateral optic gliomas, a hole in his heart and Dyspraxia associated with NF. He struggles with co-ordination and fine motor skills, which made it hard for him to ride a bike and tie his laces. He was also diagnosed with hypermobility of his joints and therefore found it hard to learn to write. We were told when he was about 6 that he would probably never be able to write legibly. 

Part of him having NF1 includes struggling somewhat academically. Despite this, he was working extremely hard to get the best possible results in his exams. To help relieve the pressure on him, Jacob and some of his peers took English Literature a year early (last year) and he got a Grade 4. The lockdown has caused his school life to end quite suddenly.

Jacob was due to sit his GCSEs this year, as he was in year 11. Lockdown not only caused the cancellation of exams but also leavers assembly, prom shirt signing etc. which is a huge shame. Jacob was also due to receive the form tutor award to be presented to him at the leavers assembly. Now we don’t even know if they will send this to him. Leaving school in this manner has left him feeling deflated and a bit let down, as if all his hard work was for nothing and he is worried about the grades he will receive.

Like most other people this summer all our plans have been cancelled. As a massive supporter of Sunderland AFC, he is hugely disappointed about the cancellation of the Euros. As well as missing the end of the season and the chance of this team, however slim it was, to be promoted.  

He has received a place to study travel and tourism at college in September, which he is really looking forward to.

Jacob has proved the medics wrong countless times.

His writing is great and due to his hard work Jacob is an accomplished swimmer. Because of his commitment and dedication, he now attends lifeguard training.

You can see Jacob on The One Show Below - 

Ella, Nerve Tumours UK's blogger has finished year 11 at Tudor Grange Academy Worcester, like many thousands of children her age she will not be doing her GCSE exams.

Ella is saddened as she has worked hard and wanted to prove to herself and teachers that she would get the grades she needed to go to 6th Form college. As the lockdown turned everyone's live upside down, she is understandably nervous about her predicted grades.  

Filter News

Filter by Date
Category
Reset

Oxford’s John Radcliffe Hospital celebrate NF2 Awareness Day

We set out to promote and educate people about NF2 & the service offered in Oxford & Southwest Region for patients

Read More

Care Quality Commission survey

Take part - if you are from an ethnic minority, have a long term physical condition & live in selected SW London boroughs

Read More

CAR research family planning decision making

This CAR UWE research explores family planning & decision making for people with a visible difference which can be inherited

Read More

Shine A Light 2024

The Shine A Light 2024 campaign had 133 buildings around the UK & the Republic of Ireland lit up in blue!

Read More

Guidance on sudden hearing loss in NF2-related Schwannomatosis (NF2-SWN)

Symptoms, diagnosis & treatment of sudden hearing loss, from Juliette Buttimore, Nurse Practitioner NF2 Service Addenbrooke's

Read More

NF2 Day 2024 by Emily Owen

A reflective poem for World NF2 Day, to celebrate people living with NF2

Read More

Connor’s NF2 story

Connor's mum Tracy's maternal instincts proved invaluable when fighting to get Connor's symptoms investigated

Read More

Jo’s Shine A Light Family Fun Day

The family fundraiser was supported by Dr Shruti Garg, member of the Nerve Tumours UK Medical Advisory Board

Read More

Erin’s 24 hour charity live stream

Erin has NF1 and is raising awareness with a 24 hour live charity stream to Shine A Light on NF

Read More

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