Ginger Butler, who sadly passed away three years ago, was a driving force in our charity. He completed the only epidemiology study of Dystonia and provided valuable data to our research partner, Professor Chinnery in the Centre for Life, Newcastle upon Tyne.

In order to continue this valuable work we need to raise £80,000, this will pay for an initial study of data and DNA samples (already collected). Once this has shown that something valuable can be learned, then the funding for the full project will come from other sources.

Dystonia is notoriously difficult to diagnose meaning hundreds of patients are incorrectly diagnosed, sometimes for many years and of course that means they aren't getting the right treatment. The outcome of this research could make diagnosis as simple as having a blood test. It could also improve treatment and who knows, maybe even find a cure!

We are asking 400 people to raise £200 each, sounds easy! The theme is Ginger, but you can raise money however you wish.