The Understood Fund is not just a programme of research; it is our direct response to the profound challenges faced by people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).
For too long, families living with these terminal and incurable conditions have experienced long periods of uncertainty, delayed diagnoses and inconsistent access to support.
Thanks to generous donations to our appeal, the Understood Fund actions our commitment to transforming people’s PSP & CBD experiences through research.
From January 2026 to December 2029, the Understood Fund will drive targeted and impactful PSP & CBD research. We are investing in studies designed to deliver real, tangible outcomes to enable:
- Fast and accurate diagnosis – ending the long and frustrating wait for answers
- Life-changing treatments – improving the quality of life for people living with the diseases
- Exceptional care – establishing consistent standards of care for people affected across the UK.
The Understood Fund brings together lead investigators, healthcare professionals, students, and most importantly, people living with PSP & CBD to fight for change. A community progressing research and fuelling hope of a future where PSP & CBD are not just known but understood.
What is the Understood Fund?
The Understood Fund has been made possible thanks to the generous support of our Understood Appeal.
Running from January 2024 to December 2025, the Understood Appeal raised £1,003,000 stemming from donations and fundraising activities from loyal supporters, and our BBC Radio 4 Appeal.
The Understood Fund allocates monies raised to specific CBD & PSP research studies that meet the key aims of the Understood Appeal.
What are the key aims of the Understood Appeal and Fund?
The purpose of the Understood Appeal was to raise funds to help propel research into PSP & CBD forward in three key areas:
- Fast and accurate diagnosis
- Immediate treatments
- Consistent standards of care across the UK.
What has the Understood Fund invested in?
Thanks to the support of donors, the Understood Fund has invested in
- Four Small Research Grants up to £25,000 each
- Two Project Research Grants up to £250,000
- One three-year £350,000 PSPA Fellowship in partnership with the Association of British Neurologists.
What specific studies will the Understood Fund finance?
UNDERSTANDING ASTROCYTES – THE BRAIN’S HIDDEN HELPERS
Dr Dianne Lopez, UK Dementia Research Institute, University of Edinburgh
Dr Dianne Lopez is a post-doctoral research fellow in the Bowles Lab, which is part of the UK Dementia Research Institute at the University of Edinburgh. She has received 12 months funding to study cells in the brain called astrocytes, which are affected by PSP. The Understood Fund will support key components of the study, such as reagents to help with cell culture, antibodies and the use of a specialist microscope for detailed cellular analysis. This project is being funded by the Fred Piper Research Grant.
INVESTIGATING PROTEIN IMBALANCE IN PSP
Dr Filipa Henderson Sousa, UK Dementia Research Institute, University of Edinburgh
Also based in the Bowles Lab, Dr Henderson Sousa will receive 24 months of support from the Understood Fund to explore how PSP disrupts the delicate balance of protein production, folding and breakdown, a process known as proteostasis. The Understood Fund will be used to culture and maintain the cells for the study, as well as mass spectrometry costs for analysis of samples. This project is being funded by the Aileen and David Heath Memorial Grant.
USING SMARTPHONES AND AI TO IMPROVE DIAGNOSIS
Professor Michele Hu, Nuffield Department of Clinical Neurosciences, University of Oxford
Professor Michele Hu, also an Honorary Consultant Neurologist at Oxford University Hospitals, is working on a project that could transform how we distinguish PSP from Parkinson’s Disease (PD) at earlier stages by using a smartphone app to measure movement. The funding from PSPA will fund a PhD student working as the lead analyst, helping to move this promising tool closer to use in more extensive NHS trials within two years. This project is being funded by the Aileen and David Heath Memorial Grant.
UNCOVERING THE ROLE OF TRIM11 IN PSP
Dr Sumi Bez, University College London
Research Fellow, Dr Sumi Bez of University College London, will spend seven months investigating a gene called TRIM11, which may influence why PSP affects people differently. PSPA’s funding will cover laboratory costs, including the use of specialised equipment, TRIM11 protein materials and detailed data analysis.
More grants from the Understood Fund will be awarded in the near future, including a Project Research Grant and a Fellowship in partnership with ABN.
We want to thank all the researchers, healthcare professionals, and students for their continued interest and work towards improving the diagnosis and management of PSP & CBD. You can find out more about our funding opportunities and current research by contacting us on 01327 322418 or by emailing us at Research@pspassociation.org.uk.
Further donation opportunities
The Understood Appeal is now closed. But donations towards PSP & CBD research are still encouraged and received gratefully. This will either assist our general research investment or specific topics or projects, which can be discussed. There are several ways of making a donation to PSPA to help us fund research and support those living with Progressive Supranuclear Palsy and Corticobasal Degeneration.
Frequently Asked Questions
How long will the Understood Fund be active?
The Understood Fund will be active for the duration of the grants funded. Therefore, it is expected that the fund will close by the end of 2029 when each research project will close.
I donated to the Understood Appeal. How do I stay in touch with research developments?
Updates from the Understood Appeal will be regularly circulated via PSPA’s channels, including PSPA Matters, our newsletters, our website and social media. Key researchers will have the opportunity to provide updates at our regular Research Information Sessions. We are also exploring other events, including an annual lecture, specifically for people who have donated to the Understood Appeal.
Can I donate to the Understood Fund?
The Understood Appeal, which actively encouraged donations to help propel research into diagnosis, treatments and care, closed in December 2025. The Understood Fund focuses on the delivery of research funded by this appeal.
Why is PSP & CBD research so important?
Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are rare, complex neurological conditions that are often misdiagnosed or diagnosed late. Investing in CBD & PSP research is vital for improving diagnosis, management and quality of life for people living with these conditions.
Can organisations partner with PSPA for PSP & CBD research?
Yes, PSPA welcomes collaboration and strategic partnerships from institutions, organisations, and companies to expand investment into neurological disease research with special focus on Progressive Supranuclear Palsy and Corticobasal Degeneration.
