‘It felt as though we had slipped through a crack and I wanted to do something about supporting others diagnosed in the future as it can be a scary, lonely journey,’ says Jacqui Black, a local from Littlehampton who will walk 100 miles this September.

She is one of the trustees of Desmoid Aid UK, a charity launching its Walk 100 Miles in September event next month, and is calling on walkers and runners from across the UK to join her.

The fundraising challenge asks participants (and their dogs) to complete 100 miles as an individual or as a team, either in one go or spread across the whole of September 2026, which is Desmoid Tumour Awareness Month.

Desmoid Aid UK was founded by osteopath Jacqui after her husband was diagnosed with the disease several years ago. Despite getting treatment from a sarcoma specialist centre, the disease is not classed as a cancer. The couple quickly realised that the amount of support available to patients, financial or emotional, was minimal.

placeholder image — Jacqui Black and her husband

Jacqui said: “Not enough people know about desmoid fibromatosis, so every penny we raise from this event will go towards awarding grants of £250 to people who have been diagnosed with the disease. No one expects to be told they have a rare tumour that needs specialised treatment and management. The costs of living with the disease and getting the right care at specialist centres often requires significant travel, and can quickly add up.

“Please join us, we can’t do this by ourselves. We’re a fairly new charity run voluntarily by a small group of people who simply spotted a gap that no-one else was filling and wanted to help others. We know there are more people out there who live with desmoid fibromatosis in the UK who need our support.”

The charity provides vital information about the rare, non-cancerous tumour called desmoid fibromatosis that forms in deep connective tissue in the body. It also signposts patients to other resources and support groups and awards small grants to people diagnosed with the disease that helps to cover unexpected costs.

Desmoid fibromatosis is diagnosed in only five or six people in every million each year in the UK. Whilst the disease can cause different symptoms for different people, depending on the tumour location and size, it is commonly found in the tummy, arms, or legs, but can appear anywhere in the body and is most common in young adults, particularly women.

Although desmoid tumours tend not to be life-threatening, they can cause significant pain that heavily impacts a person’s quality of life, restrict their movement and deeply affect their sleep. In some cases, it can become life-threatening when the tumour compresses important organs and structures such as intestines, lungs, blood vessels and nerves.

The charity’s very own mascot is a seven-year-old Labrador crossed with a spaniel called Cooper, who will be setting off with his owner, Anna Worthington, with the aim of covering at least 25 miles a week for the month of September in and around the Surrey Hills.

To date, Desmoid Aid UK has awarded 11 grants of £250 in the past 18 months to patients across the UK, but wants to do more. To find out more about the Walk 100 Miles in September fundraising event, register, or simply make a donation to Desmoid Aid UK, visit desmoidaiduk.com/fundraising.

The charity’s Facebook and Instagram handles are @Desmoid Aid UK for Facebook, and @desmoidaiduk for Instagram.