UK charity, PSPA, is launching a £2 million appeal to increase research into two rare neurological conditions, Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).

The UNDERSTOOD appeal aims to progress research into PSP & CBD in order to unlock quick and accurate diagnosis, immediate treatment and consistent care.

The conditions, which are caused by an abnormal build up of a protein called tau in the brain, over time causes people to experience difficulties with mobility, vision, speech, swallowing and cognition. As life-limiting, progressive conditions, life span following onset of symptoms, is only approximately five to seven years.

The charity feels research into establishing a diagnostic test, treatment to slow the disease progression and creating consistent standards of care, is central to their purpose, creating a better future for everyone affected by PSP & CBD. The appeal was inspired by a kind legacy donation from a supporter, Elizabeth Fiddler, alongside survey results which highlighted the impact delays in diagnosis can have. 

The 2022 survey of people living with PSP & CBD highlighted 60% of people living with the condition were initially misdiagnosed, and that on average it takes around three years for an individual to receive an accurate diagnosis. The survey also identified that access to appropriate care was also a key area needing improvement. Currently, the care support provided can vary, according to where you live in the UK. 

Rebecca Packwood, PSPA CEO, explains: “The very generous donation from Elizabeth Fiddler, inspired us to generate a much-needed step-change in PSP & CBD research. PSP & CBD are currently very underfunded areas of research, when compared with better-known conditions such as Motor Neuron Disease. We want to ensure anyone who is diagnosed with PSP or CBD in the future has better experiences.

“We know, currently, diagnosis takes too long. Once people are diagnosed, there is no treatment available to help slow the progression, and that access to appropriate care can vary, depending on where you live in the UK. This is not good enough.

“We are ambitious in our plans for progressing research, and this translates into the target we want to achieve with the UNDERSTOOD appeal. Already, kind donations to the appeal have enabled us to launch five new research grants this year, totaling £350,000. And we want to do more. We know it is a big ask, but we hope supporters UK wide will get behind the initiative and help us to create better future for everyone within the PSP & CBD community.”

If you’re able to donate any amount, large or small, please head to our website atwww.pspassociation.org.uk/research/understood/to contribute.

You can also help us reach further. If you know someone–a friend, colleague, or contact–who may be able to make a significant gift, or who represents a company that might be interested in supporting our Understood appeal, we’d love to speak with them. Please consider introducing them to us or getting in touch so we can follow up directly – you can get in touch by email at understood@pspassociation.org.uk or on 07753236471.

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