My name is James and my goal is to raise awareness and fundraise for Dystonia UK by sharing my personal journey with this condition. My eldest daughter Bethany has unfortunately been diagnosed with this condition which is estimated to currently affect at least 100,000 people in the UK yet does not have much coverage or awareness amongst the population (which hopefully I can help towards changing).

Dystonia is a neurological condition which presents with uncontrollable muscle spasms triggered by incorrect signals from the brain. Dystonia affects both adults and children and can affect any region of the body including eyelids, face, jaw, vocal cords, torso, limbs, hands and feet. It presents differently depending on the region of the body affected and each type has it's own clinical name. It is usually a lifelong condition and whilst there is currently no cure, there are several treatments available that can help relieve symptoms, scientists around the world are actively pursuing research toward new therapies.