Nerve Tumours UK

Bex and Charlotte’s page

Bex and Charlotte

Bex and Charlotte

My Story

Charlotte, her brother Joe and her dad all have NF-1. They were diagnosed in 2004. They were very fortunate to have lived very normal lives with annual check-ups as advised. In 2016, Charlotte went to UWE to train to be a primary school teacher. In 2019, Joe went off to Plymouth University to study Digital Media where he had the most amazing time of his life, we have since discovered with many photos and videos from his uni friends of what a good time he had! As with a lot of people, we weren’t aware of NF until we were diagnosed. We all led very normal lives up until last year.

Life changed for Joe in February 2023 when he started to have pains in his leg. This led Charlotte in to wanting to give something back. In May (NF awareness month) 2023, Charlotte took part in the ‘Shine a light Marathon’ and walked 26.5 miles for the 26,500 people affected by Neurofibromatosis (NF) in the UK. She hoped to raise awareness of NF and raise money for Nerve Tumours UK (NTUK). Despite approximately 26,500 people in the UK currently diagnosed with NF-1, there is still little awareness and funding for the condition. NTUK provides crucial medical and non-medical support to help those living with Neurofibromatosis. NTUK also provides support and information, as well as campaigns and raises awareness of NF on behalf of over 26,500 people in the UK who have NF. It is a life-long disease and yet not a lot is known about the disease.

However, our lives were completely turned upside down in May 2023. Following scans, tests and appointments, Joe was given the devastating news, that he had a rare and aggressive Sarcoma known as a Malignant Peripheral Nerve Sheath Tumour relating to NF, on 22nd June Joe aged 22 sadly passed away.

Since May 2023, we have managed to raise just under £4000 for NTUK. Charlotte made a promise to Joe to keep raising an awareness of NF whilst also raising some money for NTUK. Bex, (Charlotte and Joe’s Auntie) suggested to Charlotte that they both take part in the Bristol 10k.  So here we are!!!!

Thank-you for reading!

Bex and Charlotte

Nerve Tumours UK

Raising for:

Nerve Tumours UK
999%

Funded

  • Target
    £200
  • Raised so far
    £2,261
  • Number of donors
    70

My Story

Charlotte, her brother Joe and her dad all have NF-1. They were diagnosed in 2004. They were very fortunate to have lived very normal lives with annual check-ups as advised. In 2016, Charlotte went to UWE to train to be a primary school teacher. In 2019, Joe went off to Plymouth University to study Digital Media where he had the most amazing time of his life, we have since discovered with many photos and videos from his uni friends of what a good time he had! As with a lot of people, we weren’t aware of NF until we were diagnosed. We all led very normal lives up until last year.

Life changed for Joe in February 2023 when he started to have pains in his leg. This led Charlotte in to wanting to give something back. In May (NF awareness month) 2023, Charlotte took part in the ‘Shine a light Marathon’ and walked 26.5 miles for the 26,500 people affected by Neurofibromatosis (NF) in the UK. She hoped to raise awareness of NF and raise money for Nerve Tumours UK (NTUK). Despite approximately 26,500 people in the UK currently diagnosed with NF-1, there is still little awareness and funding for the condition. NTUK provides crucial medical and non-medical support to help those living with Neurofibromatosis. NTUK also provides support and information, as well as campaigns and raises awareness of NF on behalf of over 26,500 people in the UK who have NF. It is a life-long disease and yet not a lot is known about the disease.

However, our lives were completely turned upside down in May 2023. Following scans, tests and appointments, Joe was given the devastating news, that he had a rare and aggressive Sarcoma known as a Malignant Peripheral Nerve Sheath Tumour relating to NF, on 22nd June Joe aged 22 sadly passed away.

Since May 2023, we have managed to raise just under £4000 for NTUK. Charlotte made a promise to Joe to keep raising an awareness of NF whilst also raising some money for NTUK. Bex, (Charlotte and Joe’s Auntie) suggested to Charlotte that they both take part in the Bristol 10k.  So here we are!!!!

Thank-you for reading!

Bex and Charlotte