New city charity PSPA has been selected by BBC Radio 4 to feature as part of its weekly programme this October.
PSPA is using the opportunity to raise awareness, and also much needed funds, for research to help science get closer to a diagnostic test, treatments to improve quality of life and establish consistent care guidelines across the uk.
PSPA supports people living with the neurological conditions Progressive Supranuclear Palsy and Corticobasal Degeneration. These conditions affect up to 10,000 people in the UK. Currently there is no cure and no treatment to help slow the progression of the disease.
BBC Radio 4 listeners will hear a powerful personal story from charity trustee Jon Garrard, who will launch a heartfelt appeal to fund life-changing research into Progressive Supranuclear Palsy (PSP), a rare and devastating neurological condition.
Jon’s father Chris was diagnosed with PSP in 2004 after initially being misdiagnosed with Parkinson’s disease. In the appeal, Jon will share the emotional journey of his family’s experience and the urgent need for better diagnosis, treatment, and care.
“Dad was my strength, and my best friend, so when he started falling and his personality changed, I knew something was wrong.” Jon recalls. “At a GP appointment, we were told it was Parkinson’s before dad had even sat down. But after more tests, we received a diagnosis we’d never heard of—PSP. It felt like we’d been handed a ticking time bomb.”
PSP causes progressive damage to the brain, affecting balance, speech, vision, swallowing, and mobility. It often progresses fast, with many losing their battle just five to seven years from their symptoms beginning. Jon saw his own dad transformed by the condition within a year of diagnosis, to a point where his father could no longer walk or talk and required full-time care. He passed away just three years later.
“Watching Dad deteriorate so quickly was heartbreaking. We felt helpless,” Jon says. “That’s why I’m supporting the PSP Association’s appeal—to help change the future for other families.”
The PSP Association is aiming to raise £2 million to accelerate research into this terminal and currently incurable disease. Funds raised through the Radio 4 Appeal will support targeted projects focused on fast and accurate diagnosis, early intervention and treatment, and consistent, high-quality care.
“We’re getting closer to breakthroughs in diagnosis and treatment,” Jon said, “But we need donations to the appeal to turn this life-changing research into reality. No family should have to go through what we did.”
Donations of up to £50,000 will be matched funded by an anonymous supporter of the charity.
Listeners can tune in to Jon’s story on BBC Radio 4 on Sunday 19 October.
To learn more or donate, visit pspassociation.org.uk/research/understood
