Walk 100 miles in September for Desmoid Aid UK

Organised by Desmoid Aid UK

Walk 100 miles in September and support those affected by Desmoid Fibromatosis. Funds raised provide grants to people diagnosed with Desmoid Fibromatosis. Every step counts! Desmoid Aid UK - September 2025 100 mile

Closes 31/10/2025

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Desmoid Aid UK is a non-profit charity providing information for patients diagnosed with Desmoid-type fibromatosis. We provide links and resources about the disease. We also provide a small grant to help pay for unexpected costs for newly diagnosed patients undergoing treatment.

Story

We are walking 100 miles through September to raise funds for people diagnosed with Desmoid tumours and to support international Desmoid Tumour awareness month.

Desmoid Aid UK - September 2025 100 mile walk · 1 September 2025 to 31 October 2025

This is the second year of our September fundraiser and we are continually blown away by peoples support and excited about what a difference we can make to those who are affected by this terrible disease

Fundraising is at the centre of us being able to provide grants. Every £350 raised will provide a grant to support somebody diagnosed with a Desmoid tumour.

Our charity was founded when Jacqui's husband was diagnosed with the disease. This is her story;

“My husband was diagnosed with a Desmoid Fibromatosis tumour in 2022 which was growing rapidly and interfering with his digestion.

The whole diagnosis process was traumatic and as the disease is so rare it took a long time to get a diagnosis. We felt like we were going round the houses sometimes. My husband was unable to work for a year which had a huge impact financially and emotionally. During this time we discovered that he did not qualify for a lot of grants that say people with cancer would qualify for, even though he had an emergency operation and 6 months of chemotherapy. As the disease is not classified as cancer regular financial arrangements we had in place like insurance and mortgage providers did not recognise it either.

I was struck by how it felt as though we had slipped through a crack in the pavement and I wanted to do something to help support people that were diagnosed in the future as it can be a scary, lonely journey. And hence, Desmoid Aid UK was born. We are a small charity, but a big step to help support people with this disease."

Donation summary

Total
£140.00
Online
£140.00
Offline
£0.00
Direct
£0.00
Fundraisers
£140.00

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