An outpouring of generosity from BBC Radio 4 listeners has resulted in £34,057 being raised for vital research, offering hope in the battle against rare brain conditions: Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).

The powerful appeal was led by charity Trustee, Jon Garrard, on behalf of the PSP Association. Jon’s personal commitment is rooted in the memory of his beloved dad, Chris, who passed away from PSP in 2018.

Jon shared the raw reality of his family’s experience, from the moment of his dad’s terminal diagnosis to the heartbreaking progression of the disease. He did this to champion PSPA’s dedication to transforming the diagnosis, treatment, and care for everyone affected by PSP & CBD.

Jon explains: “Receiving Dad’s PSP diagnosis was like being handed a ticking time bomb. 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”

He revealed the reason for his involvement: “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.”

Heartbreakingly, 60% of people like Jon’s dad are initially misdiagnosed with other conditions such as Parkinson’s, stroke, or depression. This lack of clarity means it can take up to three years for an accurate PSP or CBD diagnosis, by which time, people may be halfway through the disease’s life expectancy.

Jon urges: “Research is the only path forward. It is the only way we can unlock the mysteries of PSP & CBD and get closer to that crucial diagnostic test. A test that can finally give answers. As devastating as the diagnosis is, knowing what you are fighting means you can access the emotional and financial life-support you desperately need.”

The appeal, which aired between Sunday, 19 October, and Saturday, 25 October, saw BBC Radio 4 listeners reach into their pockets to contribute. The collective donations and Gift Aid reached an incredible £17,029. Thanks to a generous PSPA supporter who match-funded every penny, the overall total has been doubled to a grand total of £34,057!

Jon concludes: “I am so grateful to every single person who donated. I also want to thank everyone who sent messages of support after hearing my story. Your kindness meant so much, and I’m proud to be part of such a supportive and active community fighting for change.”

The funds raised by the appeal will now be added to PSPA’s wider Understood Appeal, which has raised over £780,000. This collective generosity will allow PSPA to fund six critical research studies across the UK, accelerating the drive for a better future of accurate diagnosis, effective treatment, and consistent care for everyone affected by PSP & CBD.

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Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are two rare neuro-degenerative diseases.

They are caused by the loss of neurons in certain parts of the brain. Over time, this leads to difficulties with balance, mobility, speech, vision, swallowing and cognition.

Both conditions are life limiting. There is no treatment and no cure.

Currently, around 60% of people living with either disease, are initially misdiagnosed with other conditions including Parkinson’s, stroke and depression.

PSPA is the only UK charity dedicated to creating a better future for every affected by PSP & CBD.

We will do this by:

• Providing information and support to enable families living with PSP & CBD to live their best possible lives

• Improving the quality of life for people living with the condition via research and awareness raising

• Putting the voice of the PSP & CBD community at the heart of what we do.

For more information please visit www.pspassociation.org.uk

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