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Progressive Supranuclear Palsy (PSP) Association
The overriding philosophy of the PSP Association is that they are "working for a world free of PSP".
The three main objectives of the PSP Association are to:
- promote and sponsor research worldwide into the cause, effective treatment and eventual cure of PSP
- provide information and support for families afflicted by this disease across Europe
- engender awareness, particularly amongst relevant medical professionals, of PSP and of the Association, mainly within the UK
Some key facts about PSP are:
- there is no treatment or cure for the disease
- average life expectancy with the disease is only seven years, the last two the patient being invariably wheelchair or bed-bound
- sufferers are ultimately trapped with a sound mind in a broken body, unable to walk, talk, see or swallow
The PSP Association was established in 1994 by Brigadier Michael Koe and his wife Sara, after she was diagnosed as having PSP. The family were distressed by the lack of knowledge concerning this comparatively rare neurological disorder and appalled to learn that there was so little research seeking treatment or cure, at the time. The PSP Association was registered as a charity in April 1994. Sara Koe sadly died in January 1995 from aspirational pneumonia, a not uncommon complication of PSP. The Association has steadily grown and currently has 1,300 subscribers and numerous supporters across the UK. They have provided support and help to over 2000 sufferers and their families and have invested over £2m into research.
We have supported this group since 2005.
During 2007:
- We gave a Medical Fellowship grant of £2,000 to support the International Medical Workshop "Clinical Trials in Progressive Supranuclear Palsy" held on 27 June 2007
Our funding represents 0.25 per cent of their income overall.
