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’.
"In 1991, my attractive, young looking, intelligent and outgoing wife, Sara, hit her head on a sharp edge of scaffolding, following which she started to fall unexpectedly and complain of headaches and vision problems. A year later, things were much worse and she was diagnosed at the National Hospital for Neurology as having PSP. In April 1994, Sara and I set up The PSP Association, because we were so appalled at the lack of interest in and knowledge of this disease, even amongst the relevant medical professionals". – Michael Koe.
Sara Koe sadly died in January 1995 from aspiration pneumonia, a not uncommon complication of PSP. Her Memorial Service was held the following April and since then, April 8th has been known as the PSP Association’s ‘Magnolia Day’ after the magnolia which was Sara’s favourite flower. Each year, National PSP Awareness Week falls in the month of April.
Since 2005 The PSP Association has also supported those with the closely related, but rarer, disease Cortico Basal Degeneration (CBD).
Until recently, much of the work of the charity was administered by a team of part-time staff from an outbuilding at the home of Michael Koe in the small village of Wappenham in rural Northamptonshire. Following an unexpected legacy from Mr William Stanley Megenis, and funds raised by The PSP Association’s Vice-Chairman Sebastian Coe with celebrity Nell McAndrew on a charity edition of the TV show ‘Who Wants to be a Millionaire?’, the charity purchased new offices and moved to ‘PSP House’ in central Towcester, Northamptonshire, on 7th June 2007.
This move has allowed the recruitment of several new staff and a team of volunteers to enable further growth of the charity as it seeks to fulfil its long term objectives.
PSP House was formerly opened by The PSP Association’s Patron, HRH the Duchess of Gloucester, GCVO, in October 2007. The charity’s move to new headquarters coincided with Michael Koe's planned decision to step down as CEO. He succeeded Sir Michael Carleton-Smith as Chair of Trustees.
Jane Hardy, formerly Head of Banking at cahoot, took over as the new Chief Executive in November 2007. Jane lost her own mother to PSP in 2006, followed shortly by the death of her husband from cancer. Armed with her personal experience of PSP and formidable financial expertise she successfully led the charity through the next phase of its development until August 2010.
"Mother and George dying so close together made me re-evaluate what was important to me in life. I wanted something good to come out of the deeply harrowing years I’d been through. What I gained from these dreadful life events is first hand knowledge, experience and understanding of the pain and suffering, and the obstacles and frustrations that beset caring for people with a terminal illness. I know what others in a similar situation are going through and I want to make things better for them. In my new role I will be able to fulfil my personal ambition - to make a real difference to the lives of people with PSP and CBD and their families". - Jane Hardy.
From August 2010 The PSP Association's Chief Executive is John Chandler, CBE.