The PSP Association

Our achievements to date include:

• Investing over £2m into research that will lead to a greater understanding of PSP and CBD, the causes, possible prevention and ways to achieve earlier and better diagnosis and the development of effective treatments. In 2008/09 alone, we invested £400,000 into research.
• Setting up the Sara Koe PSP Research Centre at the Institute of Neurology in London - the first such Centre in the world to be established for research into PSP.
• Running the first ever International Medical Workshop devoted solely to PSP in 1996; and further such workshops on a biennial basis since then.
• Providing support, information and advice to people with PSP and CBD, their carers and families, and the health and social welfare professionals involved in their management and care. The Association has steadily grown and currently has well over 2,000 subscribers.
• Establishing the only Telephone Support Service dedicated to those affected by PSP and CBD. The service is run by qualified nurses with specialist training in PSP and CBD and is for patients, carers and health care professionals.
• Setting up over 25 Local Support Groups across the UK and Ireland for patients and carers, and an informal local networking service.
• Running annually, a Symposium for Carers and Therapists with presentations and updates on the latest in research and care. The location varies from year to year, for example in 2007 it was London, 2008 Manchester and in 2009 it was Cardiff.
• Organising events and teaching sessions for health and social welfare professionals and raising awareness regionally across the UK through our team of Development Officers.
• Raising awareness amongst the general public of PSP and CBD. Awareness was heightened with the untimely deaths from PSP of actor and musician Dudley Moore in 2002 and former Daily Mail newspaper columnist, Nigel Dempster, in 2007.
• In 2008 "Afternoon Tea for PSP" was launched to coincide with our awareness week held annually in April.This resulted in hundreds of tea parties being held across the whole of the UK generating media coverage in newspapers and on radio and television that reached some millions of new people, significantly raising awareness of PSP and CBD.

Despite achieving so much in a relatively short space of time, we constantly need to raise more funds in order to support this vital and fast growing work.