As many of you will know earlier this year we became aware of what a Desmoid tumour is after our daughter was diagnosed with this unicorn condition. Her world has been turned upside down and we are learning to navigate what little is known about and how to treat these rare tumors.

We are educating ourselves and finding support where we can including from the Desmoid Aid UK.

During the month of September 2025 I am hoping to walk 100 miles and would like to raise funds towards this worthy cause, any donation would be gratefully received.

With thanks Mandi

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Desmoid tumours, also known as Desmoid fibromatosis or Aggressive fibromatosis is a rare type of soft tissue tumour. In every million people about 5-6 people are diagnosed every year with a Desmoid Tumour.

It can be difficult to predict its nature, they can occur at most sites of the body and it is not know what causes them. Most Desmoid tumours are described as sporadic.

People with Desmoid tumours need the expertise of soft tissue experts and in the UK this means people need to be referred to Sarcoma Units. Treatment can range from active surveillance to Chemotherapy to surgery. It is the unpredictability and rarity of the disease that makes it difficult to treat.

September is the international Desmoid tumour awareness month and fundraising by walking 100 miles through September will provide vital funds for newly diagnosed people.