Running Cardiff Half, and Gloucester 10k, and wanting to raise money and awareness for one of my friends - first time raising money for something close to my heart, so please help ❤️

She was diagnosed with a very rare form of sarcoma called a desmoid tumour, (otherwise known as desmoid fibromatosis or aggressive fibromatosis). Sarcomas are rare, but this disease is considered unicorn-rare with only 0.000005% of the population diagnosed with it. Being so rare, there’s been little research into it and there isn’t a lot of understanding in the medical community. There is also no treatment plan for it. Although it has all the hallmarks of cancer and is treated liked a cancer under an oncologist, it is not classified as one because it does not metatisise - although you can get multiple tumours in your body and multiple tumours at the same site. It can also be fatal as tumours can penetrate bone, muscle, arteries, bowels etc. The misunderstanding, lack of research, and lack of acknowledgement of the severity of the disease (tantamount to cancer) leaves victims of the disease feeling isolated, alone and unsupported.

The Desmoid Tumor Research Foundation is the only charity committed to funding research related to the diagnosis and treatment of desmoid tumors; facilitating and enhancing the dialogue among members of the medical and scientific communities about research related to desmoid tumors; providing informational support for desmoid tumor patients and their families and friends, and heightening awareness of desmoid tumor diagnosis and treatment.

Please help me support her, and others who need it - thanks ❤️