I want the Government to fund research into Desmoid Fibromatosis in babies and children, including more research into the condition itself and treatment options.

Due to a lack of research, many children die and are left with no options other than being made comfortable at a hospice. As the condition can be genetic, other children within families many carry the same gene and have the same condition. We believe there isn’t enough research for this condition, and it’s not good enough. There must be change.