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In loving memory of a son, brother and loveable person

The Jones family is fundraising in memory of Joe Jones

13 July 2023

Other

Some of you may not know but myself aged 6 (Charlotte), my brother (Joe) and my dad (Rob) were all diagnosed with NF 1 in 2004. Despite approximately 26,500 people in the UK currently diagnosed with NF-1, there is still little awareness and funding for the condition. Nerve Tumours UK provides crucial medical and non-medical support to help those living with Neurofibromatosis. As with a lot of people, we weren’t aware of Neurofibromatosis until we were diagnosed. Joe was diagnosed with NF-1, 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 2023 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 ❤ UPDATE MAY 2025 As a family, we have been raising money for Nerve Tumours UK for the last few years. So far we have managed to raise just over £6000 for such an amazing charity. I want to make it my mission to spread an awareness of NF everywhere. More doctors and nurses need to be aware of this condition and how to best care for patients with NF  To find out more about NF please see the link below  https://nervetumours.org.uk/what-are-nerve-tumours/what-is-nf1  Thank you 💙

Created by: The Jones family ❤️ on 28/06/2023

£2,923.00

Goal: £100.00

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£3,192.75

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97 Donations

Rob

09/05/2026

Well done for continuing to raise money in memory of Joe.   Proud of you love Mum and Dad 💙🦋💙🦋

£100.00

Jo H

25/08/2025

Forever in our hearts Joe 💙

£20.00

Anonymous

15/06/2025

Well done for all the money raised. I miss you so much Joe ❤️

£5.00

20/05/2025

No message provided

Lyde Green Cake sale

20/05/2025

On the 16th May Charlotte's amazing colleagues and friends supported her by wearing blue to work. They also then held a cake sale and managed to raise

£170.00

24/08/2023

No message provided

21/08/2023

No message provided

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.

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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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