Behind every phone call answered, every family supported, and every step forward in research in 2025 are the people who chose to support PSPA and the PSP & CBD community.
People who donated, fundraised, shared stories, took on challenges, and offered their time, energy and compassion so that no family faces Progressive Supranuclear Palsy and Corticobasal Degeneration alone.
Because of your support, PSPA has been able to reach more people than ever before, with support, hope and understanding when they need it most. For many people affected by these conditions, this support arrives during some of the hardest moments imaginable. Often after months or even years of uncertainty, families suddenly find themselves facing a diagnosis they had never heard of before, that changes everyday life in ways they could never have prepared for.
But as evident in PSPA’s 2025 Impact Report, when we work together as a community, we make a meaningful difference for everyone affected by PSP & CBD.
To every supporter who took on a challenge, donated, campaigned, fundraised, volunteered or simply chose to care and support us, we want to say, THANK YOU. This report reflects what your support has made possible over the past year.
Finding support after diagnosis
Across the UK, around 10,000 people are living with Progressive Supranuclear Palsy and Corticobasal Degeneration, two devastating neurological conditions that many people have never even heard of until diagnosis changes everything.
That’s why the work we do matters so deeply.
In 2025, our community grew from 5,660 people to 6,131. More families found support. More carers found people who understood. More individuals living with PSP & CBD found somewhere they could turn to when life suddenly felt difficult and uncertain.
The Helpline responded to 9,984 calls and emails last year. Nearly ten thousand moments where somebody needed reassurance, practical guidance, or simply another human voice who listens and cares, at the end of the phone.
Whether it is providing or signposting to the right information, helping someone navigate benefits or care, or simply reminding somebody that they are not carrying this on their own, we were able to better support people who needed us.
And it was you, our supporters, who helped us make all of this happen.
The importance of support and connection
Living with PSP or CBD can be isolating, affecting not only physical health but also emotional wellbeing, confidence and connection to others. Our impact report highlights the importance of getting the right support at the right time.
Whether through a conversation with a qualified healthcare professional, the reassurance of a Helpline call, the encouragement of an exercise session or the understanding found within a support group, people found more than a service, they found connection, understanding and hope.
The feedback we have received shows that our services are helping people feel less alone, more informed and better equipped to navigate the challenges of their condition.
Driving research forward
At the same time, your support is helping us drive research forward too.
In 2025, PSPA continued funding projects focused on improving diagnosis, treatment, and quality of life for people living with PSP & CBD.
One PSPA-funded study helped rule out a genetic change previously thought to potentially increase the risk of PSP or CBD, an important step towards finding reliable biomarkers and future treatments.
Another breakthrough came through the work of Dr Ed Jabbari, whose earlier PSPA-funded research helped secure a £2.3 million fellowship from the Medical Research Council to continue developing a diagnostic test for PSP & CBD.
For families waiting years for answers, research like this represents hope.
Hope that one day a correct diagnosis can be made earlier.
Hope that treatments may slow progression.
Hope that future families may not have to walk the same path.
Raising awareness among healthcare professionals
For rare neurodegenerative conditions like Progressive Supranuclear Palsy and Corticobasal Degeneration, awareness is just as important as research.
That is why PSPA’s education work with healthcare professionals continues to have such an impact.
In 2025, 91% of ophthalmologists attending PSPA Masterclasses said they felt more confident referring patients if they suspected PSP. Meanwhile, 94% of physiotherapists said the Mobility and Falls training improved their ability to recognise disease progression and adapt care appropriately.
This means someone living with PSP or CBD receiving the right support months earlier than usual. It means fewer misdiagnoses, faster referrals, and families spending less time searching for answers.
Personal challenges that made a difference
A special thanks goes to the supporters who turned their grief and frustration into something extraordinary.
People like Leslie Ferrar.
After her Aunt Beth was diagnosed with PSP following years of delays and misdiagnoses, Leslie decided to mark her 70th birthday by walking 630 miles in six months.
What began as a personal challenge became something far bigger.
By the end, Leslie had raised more than £20,000 for PSPA!
Supporters like Leslie helped us ensure that others facing PSP & CBD can access the support, information and community they need, when they need it the most.
The impact we made together
Every call answered, every family supported, every research area explored, and every life touched is made possible by the people who choose to stand with the PSP & CBD community. By donating, fundraising, volunteering or raising awareness, you help ensure that no one faces these devastating conditions alone.
Together, we can continue to provide hope, support and understanding today, and drive forward research that creates a better future for everyone affected by Progressive Supranuclear Palsy and Corticobasal Degeneration.
You can view PSPA’s 2025 Impact Report here.
