Back in October, Milton Keynes-based PSPA, the only UK charity dedicated to supporting people living with rare, neurological conditions called Progressive Supranuclear Palsy and Corticobasal Degeneration, broadcast a BBC Radio 4 Appeal.
The appeal was led by PSPA Trustee, Jon Garrard, whose dad’s was diagnosed and died of PSP.
Jon shared his personal experience to highlight the need for funds to help progress release into the conditions.
“Receiving Dad’s PSP diagnosis was like being handed a ticking time bomb,” Jon said, “The lack of awareness and understanding means all you can do is live day to day, never truly knowing what fresh challenge the next moment will bring.
“Challenges like losing the ability to feed himself, speak and move independently.”
Speaking about the reason for his involvement, Jon added: “PSPA was a lifeline for my family after dad’s diagnosis. Raising awareness and funds in his name means the world to me. It’s my chance to help ensure other families don’t have to endure the uncertainty we did.”
The appeal has raised just over £34,000, funds which will be added to the total raised for PSPA’s research appeal, which to date has generated £780,000 for PSP & CBD research.
PSPA has so far awarded £100,000 from the research appeal to four small research grants to scientists based at the University of Edinburgh, Oxford University and Cambridge University.
Early in 2026, a larger grant of up to £250,000 will be awarded, together with a three-year research fellowship in partnership with the Association of British Neurologists.
