MAKING
OF PSPA MATTER
Rebecca Packwood PSPA CEO
Rowena Ironside Chair, PSPA Board of Trustees
2024 was a milestone year for PSPA, one that gave us the opportunity to reflect on three decades of progress while looking ahead to the changes we still need to make for everyone affected by PSP & CBD.
In the past 30 years PSPA has grown into a force for change, but there is still much to do. Diagnoses of PSP & CBD must be faster, access to care must be equitable across the UK, and awareness of the conditions must reach further. To drive these changes, in 2024 we launched new services, funded vital research, and introduced key roles to strengthen our awareness raising and influencing activity.
Our 30th Anniversary year has also been marked by an incredible show of generosity from our community. More people than ever took on fundraising challenges, volunteers gave their time and energy to support people affected by PSP & CBD, and donors, Trusts, and Foundations stepped up their support. Together, we achieved record-breaking income, nowhere more evident than in the success of our Walk for Hope, where families and friends came together to make a real difference.
With this momentum, we have set our sights on 2025 as a year of action. We will invest more in research, expand awareness among health and social care professionals, and enhance support for those living with PSP & CBD. Our plans are clear: to improve lives now and drive forward the breakthroughs of tomorrow.
To our dedicated supporters and volunteers—you are at the heart of everything we do.
Thank you for all your support and hard work.
GOAL 1 SUPPORT AND INFORMATION
The lack of information and support available to families affected by PSP & CBD sparked the creation of PSPA. In 2024, our focus remained on developing and delivering services to enhance the lives of those impacted by PSP & CBD.
A generous grant from The National Lottery Community Fund allowed us to introduce two new services as part of our Mind, Body and Soul project: online exercise sessions with Neuro Heroes and counselling provided by RareMinds. Additionally, we have expanded our support to families by offering information tailored to help young people understand how they can assist a family member living with PSP or CBD.
OUR SUCCESSES IN 2024 INCLUDE:
• Expanding our community by 1,500 people living with PSP & CBD, carers, and family members, meaning a total of 5,660 people are receiving support and information to enable them to live their best lives possible
• People affected by PSP & CBD received emotional and practical support through 9,580 contacts with the Helpline
• Carers received support through 656 attendances at online Carer Support Groups. With 72% of attendees reporting the meetings improved their wellbeing
• People gained support and made valuable connections with others living with the conditions at our 12 online and 18 in-person support groups
• 100% of people felt better equipped to manage the emotional impact of their diagnosis after receiving counselling support
• 15,900 publications were downloaded from our website, helping to increase understanding of PSP and CBD.
To reach more families impacted by PSP & CBD, we are committed to enhancing our service provision in 2025. This includes expanding our Helpline team, introducing additional Carers Support Groups tailored to specific needs, and updating our publication: Your Personal Guide to PSP & CBD.
“I CAN PARTICIPATE MORE IN EVERYDAY LIFE, AND I HAVE MORE ENERGY THANKS TO PSPA’S EXERCISE CLASSES.”
We delivered
61 people felt more confident and capable of moving around after taking part in our Online Exercise Sessions.
one-to-one counselling sessions to help people feel better equipped to manage the emotional impact of their diagnosis
THE FAMILIES WE SUPPORT
A key learning during our 30 years of history is how wide the impact of PSP & CBD spreads amongst a network of family and friends.
As our founder Michael Koe learned, a diagnosis can be overwhelming and isolating without support. Here Vanessa Sutcliffe shares how PSPA has supported her family since her mum was diagnosed with PSP, and how she wanted to give something back.
“OVER THE LAST TWO YEARS, PSPA SUPPORT GRANTS HAVE HELPED US TO PURCHASE NECESSARY EQUIPMENT FOR MUM.”
“AFTER ALL THE VARIOUS SUPPORT WE’VE RECEIVED FROM PSPA, I WAS KEEN TO GIVE SOMETHING BACK.”
“My mum, Nancy, was diagnosed with PSP in August 2022, following two years of unexplained falls and impaired vision.
“Initially we were overwhelmed by her diagnosis. So, Mum’s neurologist recommended we seek support from PSPA, and we are glad we did. I was contacted by our regional Helpline Care Navigator who helped answer some of the many questions we had and prompted me to think of things I didn’t already know about, like applying for Attendance Allowance.
“Over the last two years, PSPA Support Grants have helped us to purchase necessary equipment. First this included a rollator to use when out and about, a personal call alarm system and a bedside touch lamp. Then last year, the grant helped us to purchase a new wheelchair.
“In addition, I have found attending the charity’s monthly Carer’s Support Group meetings invaluable and so encouraging to connect with other people in the same situation. Thanks to information sessions, we also learned more about research studies mum could take part in.
“After all the support we’ve received from PSPA, I was keen to give something back. I volunteered to take part in a focus group helping to develop A Guide to PSP & CBD for Carers. The group input into the content, adding information that we felt was important to others looking after someone with PSP or CBD.
“I have also raised money for PSPA through a sale of Mum’s books, raising £85 in cash and organising a Walk for Hope last summer, raising £1,420!”
GOAL 2 RESEARCH AND AWARENESS RAISING
Over the past 30 years, PSPA has demonstrated the importance of early diagnosis and increased awareness in facilitating coordinated, consistent, and compassionate care.
Recognising this, we have expanded our efforts in research and awareness initiatives. This includes funding five new research projects and establishing a new role dedicated to our policy and advocacy work.
SUCCESS THROUGHOUT 2024 INCLUDES:
• To deepen our understanding of PSP & CBD, how they develop, and the care people need, we increased our research investment by 4% to £152,000
• We funded 11 research projects to investigate core topics including accurate diagnosis, coordination of care and improving quality of life
• 250 carers and people living with PSP & CBD have better understanding and awareness of current research studies after attending two online Research Information Sessions
• We sent our new resource for MPs to all UK politicians
• Raised awareness of PSP & CBD by contributing to five service consultations and policy briefings including providing evidence on a 10-Year Plan for NHS in England, and for the Health and Social Care Committee’s inquiry into inaction on social care reform.
With a bold vision for the future of research and awareness, our goal for 2025 is to launch five new research grants totalling £350,000 as part of our Understood Research Appeal.
Furthermore, we are committed to reimagining educational events for health and social care professionals. Quarterly masterclasses tailored to specific professions will provide valuable insights and knowledge, while regional study days will offer hands-on learning experiences. Our policy efforts will be focused on breaking down barriers to accessing coordinated care, with a particular emphasis on the challenges of obtaining Continuing Healthcare Funding.
“IT WAS GOOD TO HAVE AN OVERVIEW OF WHAT SUPPORT IS AVAILABLE FOR PEOPLE LIVING WITH PSP OR CBD AND THEIR CARERS, AND TO UNDERSTAND HOW WE CAN WORK CLOSELY WITH PSPA.”
£160,000
The Understood Research Appeal has so far raised £650,000, with £160,000 generously donated in 2024
of health and social care professionals who attended our PSP & CBD training sessions feel more confident in supporting people with PSP & CBD 73%
THE SCIENCE BEHIND THE STRATEGY
Enriching our knowledge of PSP & CBD and empowering those affected to lead fulfilling lives at every stage of the diseases, is at the core of our dedication to research.
This dedication dates back to the early days of the charity, when we appointed our first Research Fellow, Professor Huw Morris, in 1997. Recognising the importance of fostering further research into PSP & CBD and nurturing research careers, we have continued to invest in fellowships. Dr. Rob Durcan currently serves as PSPA’s Research Fellow, focusing on understanding how the brain’s noradrenaline system influences symptoms like apathy and impulsiveness, ultimately improving the quality of life for patients.
Dr Rob Durcan shares an update on how his study is progressing: “With funding from PSPA, I worked towards delivering a clinical trial (NORAPS) exploring if we can improve symptoms by reversing the noradrenaline deficit PSP causes. This trial is just about to complete recruitment, and we anticipate the results in late 2025.
“Preliminary results, using brain scans to measure the area of the brain that produces noradrenaline, support what we already know about the degeneration caused by disease severity, depression, anxiety and impulsivity. By the end of the trial, I hope to establish if the degree of degeneration seen at the beginning of the trial can predict potential response to drug treatment with atomoxetine.
“I will also be looking at over 350 proteins in blood samples, which are markers of brain health and brain inflammation and how they might change over time. And if the drug could have a potentially helpful effect on these blood proteins. This builds upon recent work, identifying patterns in blood proteins that may help with PSP diagnosis and finding targets for treatments.”
In addition to larger research investments, we also have been increasing our funding to smaller projects. Such projects are particularly important for early career researchers, such as Dr Mansoureh Hnazaee, Dr Patrick Cullinane and Dr Maura Malpetti.
GOAL 3 INVOLVEMENT
Throughout our charity’s 30-year history, we have kept the experience of people affected by PSP & CBD at the heart of everything we do.
Central to this has been the recruitment of a dedicated volunteering community to assist PSPA in the delivery of support services, the development of resources and input into research design.
Our volunteers come from diverse backgrounds - former family members, current caregivers, individuals living with PSP & CBD, and healthcare professionals. Their valuable input drives our forward planning, and we are immensely grateful for the time and dedication they contribute.
INVOLVEMENT SUCCESSES IN 2024 INCLUDE:
• Our volunteers delivered 1,465 hours of support to people affected by PSP & CBD
• Learned valuable insights about our services and research programme from 35 consultations and engagement events
• We updated our website content, voice banking funding, 30th Anniversary Awards and research grant applications based on engagement with our members during the course of the year
• Enriched awareness and interest in PSP & CBD with details of PSPA funded research shared in five professional journals and publications such as Movement Disorders Journal.
Enhancing our understanding of how PSP & CBD impacts on families, access to care and opportunities to become involved in research studies, in 2025, we will collect experiences from our community via our survey of people living with PSP & CBD. We also aim to review our Link Volunteer Service and ensure any content produced meets our supporters’ needs.
Growing our community of volunteers by 8% bringing the total number to 211
Broadening opportunities for people living with PSP & CBD and family members to take part in research by increasing our register of people interested in research by 92 to 235 people 8% 235
2024 FINANCIALS
We ended 2024 in a strong position, with £400,000 surplus. Continuing our investment in research, £350,000 will be released in 2025 for five new research grants. This additional funding has been made possible thanks to the generous donations made to the Understood Research Appeal.
PSPA trustees have also proposed the release of up to £350,000 for a three-year research fellowship, scheduled to commence in September 2026. The funding commitment remains subject to final approval and contractual arrangements. As this event occurred after the balance sheet date and no obligation existed at year-end, it is treated as a non-adjusting post balance sheet event.
GET IN TOUCH
If you would like to support PSPA, please get in touch
Visit: www.pspassociation.org.uk Tel: 01327 322414
Email: fundraising@pspassociation.org.uk