About The PSP Association

Progressive Supranuclear Palsy, or PSP, involves the progressive death of neurons (nerve endings) in the brain. It affects balance, mobility, vision, speech and the ability to swallow, leaving sufferers eventually unable to look down, walk, feed themselves or communicate effectively with the world around them. PSP recently claimed the life of newspaper columnist Nigel Dempster and Dudley Moore died from the disease in 2002.

Recent research suggests PSP affects in the UK over 6 people in every 100,000, or around some 3,800 living patients.  Leading neurologists consider because of misdiagnosis and non-diagnosis, a true figure to be nearer 10,000.  Even taking the lower figure, this means PSP is at least as common and as at least as devastating as its far better known ‘cousin’ Motor Neurone Disease.

The PSP Association was established as a registered charity in 1994 by Brigadier Michael Koe, OBE and his wife Sara after she was diagnosed as having PSP.  They were appalled to learn that so little was known about this disease and established the charity to ‘conquer PSP through effective research, education, welfare and communication’.  This aim is supported by the following objectives:

– promoting and sponsoring PSP research,

– providing information and support for patients and their carers, and

– engendering awareness of PSP amongst relevant health and welfare professionals and the public.