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."