The UK’s only Sarcoidosis charity, SarcoidosisUK, is celebrating 20 years since its foundation with pioneering research that hopes to find a cure for this rare disease.
Sarcoidosis is an under-researched disease, affecting one in 10,000 people in the UK and a million around the world.
This agonising, debilitating disease can affect any part of the body. It often affects the lungs but can also target the skin, eyes, joints, nervous system, heart and other body parts. The rare condition causes small patches of red and swollen tissue, called granulomas, to develop in the organs of the body. Patients can be affected in multiple organs.
Currently there is no cure and patients have their symptoms treated with the hope that the disease goes into remission. However, in 20-30% of cases it becomes chronic and in up to 5% cases it is terminal.
Since its inception, SarcoidosisUK has focused on funding and commissioning research towards finding a cure. In the last three years it has negotiated donation multiplying partnerships to fund over £360,000 of crucial research. Each project has been a building block towards a cure and reducing deaths from Sarcoidosis.
Now in its 20th year, ground-breaking research offers hope of finally finding a cure. Researchers from the University of Vienna have discovered that “switching on” a protein called mTOR in a mouse gives it Sarcoidosis. SarcoidosisUK is funding a project to discover if the reverse works – blocking the mTOR protein to stop Sarcoidosis.
Crucially, there are already approved human mTOR blockers – which means that a successful trial could deliver a cure far more quickly.
SarcoidosisUK is hoping to celebrate its 20th anniversary by funding a globally significant human trial to see if those blockers can cure Sarcoidosis. If successful, this would provide the world’s first ever treatment for Sarcoidosis. The charity is therefore aiming to fund £60,000 of the £120,000 total needed to fund the trial – which, for the first time, could deliver a life-saving cure for this rare disease.
Henry Shelford, Chairman and CEO of SarcoidosisUK, called for urgent donations to support the research:
“We fund a significant piece of research every year. Each one is a building block towards a cure. This year, our 20th Anniversary, we’re excited to explore the opportunity mTOR blockers represents. We truly may be on the verge of a cure – but we can only find out with your help. Please consider donating to help us find that cure.”