Progressive Supranuclear Palsy Association UK

The Progressive Supranuclear Palsy (PSP Europe) Association is a registered charity dedicated to promoting research worldwide into progressive supranuclear palsy (PSP), providing information and support to PSP afflicted families across Europe and engendering awareness of PSP and the PSP Association mainly across the UK. Progressive supranuclear palsy is a comparatively rare neurologic disorder (prevalence some 6 per 100,000). It is a progressive brain disease, involving the progressive death of neurons in the mid brain immediately above the nuclei (hence supranuclear), which control balance, movement, vision – particularly upgaze and downgaze – speech and ability to swallow. It is characterized by spastic weakness of muscles affected by the cranial nerves (i.e., muscles of the face, throat, tongue). Symptoms may include falling, difficulty walking (ataxia), vision disturbances, and difficulty in speech (dysarthria) and swallowing. The exact cause of this disorder is unknown, though there is a genetic component. Founded in 1994, the PSP Association provides a telephone counseling service staffed by nurses trained in the care of individuals with PSP, runs local support groups, holds biennial international medical workshops, annual symposiums for carers and therapists and publishes newsletters or bulletins, which update readers on the progress of the charity towards its objectives, including research, support and awareness engendering three times a year. There are currently sixteen local support groups within the United Kingdom and the PSP Association is dedicated to forming and promoting similar groups across Europe.