PSPA Impact – Making a Difference for People Affected by PSP & CBD
Thank you for helping create a better future for everyone affected by Progressive Supranuclear Palsy and Corticobasal Degeneration.
Across the UK, 10,000 people are living with PSP & CBD. Every one of them, and every family supporting them, deserves timely answers, specialist care, and a community that understands what they’re going through. Thanks to you, in 2025, we reached more people than ever before. For example:
- We expanded our community of people living with PSP & CBD, families, and carers, from 5,660 members in 2024 to 6,131 members in 2025.
- Our Helpline supported more people in 2025, answering 9,984 enquiries (by phone and email), compared to 9,580 in 2024.
Why Your Support Matters
Your support matters because too many people still face their diagnosis alone and struggle to receive adequate support and care.
This is why your generosity is so vital.
In 2025, you helped us deliver specialist support, raise awareness, and make sure more families felt informed, connected, and less alone on their journey.
Now, we’re proud to share the impact you made possible.
Thanks to you, people living with PSP & CBD, as well as their carers and family members, are living their best lives possible with high-quality support and information.
The Impact of Your Support
Maggie’s Story
Maggie and Chris Chapman have always taken on life together, the good times, the big decisions, and any challenges. When Chris was diagnosed with PSP in 2021, Maggie suddenly found herself making decisions they would normally have made as a team. But Maggie stresses that she never truly felt alone, thanks to the support of their daughters, other carers and PSPA.
“The carers I’ve met through PSPA have been invaluable. If I have a question or a challenge, I can turn to our WhatsApp group or meet other Carers I’ve met through PSPA for a cuppa and get answers and understanding (and importantly relax and share a laugh) from people who really get it.
Peer support from the monthly PSPA Carers group and via the online forum, Health Unlocked, has helped with countless practical decisions, including around Chris’s deteriorating swallowing.
I don’t know what I would do without the support I’ve had from PSPA and the carers I’ve met. Their insight, encouragement and shared experience have been truly invaluable.” – Maggie Chapman
Hope For A Better Future
Thanks to your support, people affected by PSP & CBD have been given hope for more effective treatments, faster diagnosis, and better care, through investment in research and through the education of healthcare professionals.
A research project using data from the PSPA-funded PROSPECT-M-UK study found no evidence that changes in the C9orf72 gene (called repeat expansions) increase the risk of developing PSP or CBD. Ruling out this particular gene change is an important step in the search for a reliable biomarker that could be used in clinical trials of treatments designed to slow disease progression.
As a result of the preliminary data gathered by Dr Ed Jabbari during a recent PSPA-funded research project, Dr Jabbari has been awarded a Clinician Scientist Fellowship by the MRC worth £2.3 million to further his research into the development of a diagnostic test for PSP & CBD called a seed amplification assay.
91% of attendees of our Masterclass aimed at Ophthalmologists said that they felt more confident in referring people to other healthcare professionals if they suspected PSP.
94% of attendees of our Masterclass aimed at Physiotherapists said that the Masterclass enhanced their ability to recognise disease progression and adjust mobility interventions for people with PSP or CBD accordingly.
Danielle’s Experience
“As an Advanced Clinical Practitioner at the Memory Assessment Service, I often meet patients presenting with atypical symptoms of Alzheimer’s.
“Because of the area I work in, I had heard of PSP & CBD before but didn’t know too much about them. The conditions have come up in conversations with colleagues, and more recently, I have looked into them more for my own development. As part of this, I attended PSPA’s recent Masterclass focusing on cognition and mental health in people living with PSP & CBD.
“The Masterclass was extremely informative, well presented, and helpful for me to further understand these conditions. Going forward, it has given me more insight into what symptoms to look for, as well as the confidence to look at patients from a differential diagnosis perspective. The impact of this will be that if I suspect PSP or CBD, I can refer the patient to relevant services faster.” – Danielle Calvert, Advanced Clinical Practitioner and Non-Medical Prescriber, Pennine Memory Assessment Service, Burnley.
Leslie’s Story
When Leslie Ferrar’s Aunt Beth was diagnosed with Progressive Supranuclear Palsy after two years of misdiagnoses and appointment waiting lists, the news was hard to take in.
But instead of giving up, Leslie put on her walking boots.
To mark her 70th birthday, Leslie set a daunting goal: 630 miles in six months. As a retired accountant, she planned the journey with precision, averaging four miles a day, with the stories of her aunt and others living with the challenges PSP & CBD bring, which kept her moving.
“PSPA gave us the support we needed to prepare for the future. And after hearing about PSPA’s Pathway to Progress event, I knew I had one big fundraiser left in me, one more chance to make a difference, to ensure no other family had to walk this path alone.” – Leslie Ferrar
Leslie achieved her goal of 630 miles in six months and smashed the fundraising target she had set herself, by raising over £20,000 in the end.
Details about our activities in 2025, including income and expenditure, will be available soon in our annual report.
On behalf of everyone living with PSP & CBD, and their families and carers, thank you for your support.
