New Berkshire based foundation launched to highlight Gerstmann-Straussler-Scheinker – a rare disease

Rare diseases all over the world will be highlighted on Rare Disease Day, Tuesday 28th February, and a new Berkshire based foundation aims to raise the profile of one particularly rare disease.

The Diana Camidge Foundation has been set up to raise funds to find a cure for Gerstmann-Straussler-Scheinker (GSS), an extremely rare prion disease similar to Creutzfeldt-Jakob Disease (CJD) for which there is currently no cure.

Set up by family and friends of Diana Camidge, who died in September 2016 from GSS, the Diana Camidge Foundation’s aim is to raise awareness of GSS, which is believed to affect one in a million people, and fundraise, in order to try and find a cure for the illness, as John Camidge, Diana’s brother, explains.

“Most people have heard of CJD, but very few people have heard of Gerstmann-Straussler-Scheinker, although its symptoms are very similar to CJD and, like CJD, there is currently no cure.  However, the MRC Prion Unit and the National Prion Clinic have created a drug which could potentially treat GSS.

“Having lost my sister to this awful disease, the fact that there may be a cure within reach is hugely exciting and is driving me to do whatever I can to raise awareness of GSS and fundraise to help the MRC Prion Unit and the National Prion Clinic in their work.”

The foundation has already begun to fundraise via a range of events and more information is available on its website

“There is real hope for a cure in the future but the significant cost of clinical trials means that we need to do everything possible to raise awareness and fundraise nationwide.  The support the foundation has received already has been overwhelming and, with the help of all our friends, family and members of the public, we hope to be able to help find a cure” concludes Mr John Camidge.