Motivated by his family’s own experience of PSP, Brigadier Michael Koe established PSPA in April 1994, driving forward an ambition of creating a better future. Here we look back at key PSPA moments.
Michael’s wife, Sara, was diagnosed with PSP in 1993 after developing worrying symptoms including problems with balance, speech, swallowing and looking up and down.
Local neurologists were unable to determine what was wrong.
Undeterred, the family continued investigations into Sara’s symptoms. This led to a week’s stay at the National Hospital for Neurology at Queen’s Square, London, under the care of Professor Martin Rossor and Professor Andrew Lees. During this stay, Sara received a diagnosis of PSP.
Driven by the bleak prognosis, Michael began researching what help was available.
He visited the American PSP Association, where he heard one specialist, Dr Irene Litvan, may be close to a cure. Unfortunately, this was incorrect.
Although the trip, was unsuccessful in terms of aiding Sara’s condition, it planted a seed in Michael’s mind. Setting up a charity in the UK to help other people affected by the condition.
When discussing the decision to set up PSPA, Michael said: “Sara and I were upset that no one knew, or seemed to care much about PSP. We were keen to do something to draw public attention to this particularly nasty brain disease and help others living with PSP. We also were determined to raise awareness and funds for research.”
So, in 1994 Michael joined forces with local MP, Michael Morris and friends; Sir Michael Carlton Smith, James Stanford and Sir John Greenaway to establish the UK PSP Association.
On 25 September 1996, Professor Larry Golbe was one of the leading professionals to speak at the first PSP & CBD Research Workshop in Kent (a summary provided in the Society of Progressive Supranuclear Palsy newsletter above).
The workshop was organised by Michael Koe, who was the CEO of PSPA at the time and marked the start of a great relationship with SPSP, now CurePSP. The workshop continued to be held bi-annually until 2018, when it was rebranded as the PSP & CBD International Research Symposium.
Professor Huw Morris has been working with PSPA since 1997 when he was hired as the charity’s first research fellow.
Here Professor Morris shares some insight into how his research career began and his continued relationship with PSPA.
With magnolias being Sara Koe’s favourite flower, it was no surprise, one of PSPA’s big fundraising dinners was named The Magnolia Ball in her honour.
The event was held at Stowe School in Northamptonshire, where more than 200 guests including the charity’s Royal Patron HRH The Duchess of Gloucester, gathered. Guests enjoyed a three-course meal, and lots of dancing. Fundraising was helped by ticket sales and an auction, with prizes ranging from a week’s holiday in a luxury villa in the Algarve, tickets to Wimbledon and weekends away.
The event took a lot of organisation, however, it was worth it, with £25,000 raised!
Debbie Benadie was one of the first PSPA employees to be hired. Now working as the PSPA Office Manager, Debbie looks back over the 22 years she has been working for the charity.