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 💙
20/05/2025
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£5.00
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
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£5.00
21/08/2023
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£20.00
Alan and Joanne
29/07/2023
In memory of Joe x
£20.00
28/07/2023
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£20.00
15/07/2023
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£50.00
Registered Charity Number: 1078790 and SC045051
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