Helpline 07939 046 030
Freephone 0300 102 17 22*
The Jones family is fundraising in memory of Joe Jones
13 July 2023
Other
Joe was diagnosed with NF-1 in 2004, when he was 4. He was very fortunate to have lived a very normal life with yearly check-ups as advised. In 2019, Joe went off to Plymouth University to study Digital Media where he had the most amazing time of his life, we have now discovered with many photos and videos from his uni friends as proof!
Life changed for Joe in February 2023 when he started to have pains in his leg. Following scans, tests and appointments, he was given the devastating news in May, that he had a rare and aggressive Sarcoma known as a Malignant Peripheral Nerve Sheath Tumour. On 22nd June Joe sadly passed away.
As a family, we are seeking donations to help raise more awareness and hopefully fund research into the condition. We would like the money that is raised to go into the Nerve Tumours UK Charity to help make a difference. Please help us, your donations will be gratefully appreciated.
Sleep tight Joe ❤
Created by: The Jones family ❤️ on 28/06/2023
Tamera
13/07/2023
I will miss you terribly Joe, Thankyou for everything you have ever done for me. You're a shining star in the night sky forever more x
Toria
13/07/2023
❤️❤️
£10.00
Nicola
13/07/2023
Thinking of you, Kate, Rob & Charlotte at this time. Thinking of Joe, a wonderful lad, always x
£30.00
12/07/2023
No message provided
£20.00
Jane
12/07/2023
My deepest sympathy is with your family
£40.00
Lando
12/07/2023
Rest easy Joeski x
£20.00
Emily
12/07/2023
I'm so sorry for your loss. Cherish those amazing memories with your beautiful person. All my love to you all and thinking of you. Xxxx
£10.00
Registered Charity Number: 1078790 and SC045051
Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.
Website by Optima
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, MD, PhD, University Hospital Leuven
Prof. Ellen Denayer, University Hospital Leuven
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, 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, MD, University of Manchester, UK
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, MD, University Medical Center, Hamburg-Eppendorf, Germany
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
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.
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.
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, 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
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, 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, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands
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, 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
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, 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
‘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
Cookie Policy: Our site uses cookies to analyse usage, record your cookie preferences and give you the best possible experience. If you continue without updating your preferences, we’ll assume you’re happy for all cookies to be set. Tell me more
Our site uses cookies to analyse usage, record your cookie preferences and give you the best possible experience. If you continue without updating your preferences, we’ll assume you’re happy for all cookies to be set.
These cookies are used to record your cookie preferences. Tell me more
These cookies are used analyse usage and to give you the best possible experience. Tell me more