This is the first official fundraising campaign since the charity was formed and we are excited about what a difference it will 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.

“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 operation and 6 months of chemotherapy. As the disease is not classified as cancer things like insurance and mortgage policies 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.