PSPA_Matters_Edition_4

PSPASSOCIATION.ORG.UK

M TTERS

PSPA

EDITION 4 / 2025

UNDERSTOOD FUND POWERING DISCOVERY TURN TO PAGE 10

IN THIS ISSUE • News • Awareness • Personal Experience • Research • Information and Support • Fundraising • Volunteering

PSPAMATTERS

HERE FOR YOU Our Helpline Care Navigators are here to support everyone affected by PSP & CBD. Each Helpline Care Navigator has a designated area (see map) where they provide proactive support, including: • Information on all aspects of living with PSP & CBD, such as symptom management, benefits and entitlements and everyday living • Emotional and practical support • Contact details for local support, which may include Support Groups • Information about how PSPA can support you • Information about health and social care and how to access these services • Signposting to other sources of information • Referral for non-means tested benefits applications via Department of Work and Pensions (DWP) home visiting service • Supporting evidence about PSP & CBD for Blue Badge applications and Continuing Healthcare applications

AMANDA POTTAYYA

• Provide specific information written for health and social care professionals and access to Education Volunteers.

Our Helpline and information service is available Monday to Friday 9am to 9pm.

Tel: 0300 0110 122 or email helpline@pspassociation.org.uk

JAVERIA SHAFIQ

DEB RUDDOCK

DIONNE WARD

PSPA Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes, MK9 3BN Registered charity number England and Wales 1037087 and Scotland SCO41199.

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KAYSHA MARLOW CATHY MOUGHTON

WELCOME There is so much to celebrate in this edition of PSPA Matters that it’s hard to know where to begin! From the latest research updates and practical tips for staying well this winter, to the launch of our Bauble Appeal, there is something for everyone.

One of the true highlights for me has been learning about the impact of our new Masterclass series, run by Carol Amirghiasvand with the support of Trustee Greg Richardson.

This initiative, launched earlier this year, has already reached over 500 health and social care professionals, equipping them with the knowledge and skills to improve diagnosis and standards of care. As a charity, it’s vital we continue to innovate and find new ways to support people affected by PSP & CBD, and this is a brilliant step forward.

This quarter, I was delighted to welcome Peggy, our new Helpline and Support Services Manager. The Helpline is one of our most important services, offering vital support to families, and I’m confident Peggy will be a fantastic addition to the team. Alongside this, we’ve also expanded our capacity by creating a new Communications and Website Officer role. Pooja, who joined us in October, will be focused on keeping the website fresh, accessible and impactful.

In September, I had the pleasure of meeting some of our wonderful volunteers at the Volunteer Development Day in Nottingham. Many of our volunteers have personal experience of PSP & CBD, and their feedback helps us to shape and improve what we do. PSPA simply couldn’t achieve half as much without their passion and commitment.

As this is my final introduction to PSPA Matters, I want to thank you all for your support, dedication, and passion for such an important cause. It has been a privilege to work alongside you, and I hope you enjoy reading my reflections on page six.

With warmest wishes, and every success for the future.

CONTENTS 04

PSPA NEWS

06

REBECCA’S GOODBYE

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LATEST RESEARCH

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THE UNDERSTOOD FUND

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NEW RESEARCH GRANTS

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DAVID’S JOURNEY

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SUPPORT GRANTS

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STAYING WELL AT WINTER

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DR ANNALISA CASARIN

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BAUBLE APPEAL

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MASTERCLASS

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HELLO TO PEGGY

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PATHWAY TO PROGRESS

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INFLUENCING FOR BETTER CARE

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VOLUNTEER DEVELOPMENT DAY

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LONDON WINTER WALKS

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VITAL VOLUNTEERS

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GRAHAM WRIGHT

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PROMOTING PSP & CBD

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HONOURING TONY

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THANK YOUS

USEFUL CONTACTS Main contact 01327 322410 info@pspassociation.org.uk Helpline 0300 0110 122 helpline@pspassociation.org.uk Fundraising 01327 322414 fundraising@pspassociation.org.uk Volunteering 01327 368597 volunteering@pspassociation.org.uk Rebecca Packwood, CEO 01327 322413 rebecca.packwood@pspassociation.org.uk

Rebecca Packwood PSPA CEO

Carol Amirghiasvand,​​​​ Director of Service Improvement and Development | Deputy CEO 01327 356137 carol.amirghiasvand@pspassociation.org.uk Helen Chapman, PSPA Matters Editor 01327 356135 helen.chapman@pspassociation.org.uk Megan Hodgson, Research Coordinator 01327 322418 research@pspassociation.org.uk

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PSPAMATTERS

PSPA NEWS NEW CEO FOR PSPA We are delighted to announce the appointment of Dr James Cusack as the new Chief Executive Officer of PSPA. James joins PSPA with over a decade of experience in the charity sector, having previously served as CEO of Austistica, the UK’s national autism research charity. His leadership and commitment to driving progress in neurological and neurodevelopmental research will be invaluable as PSPA continues to expand its impact and reach.

James said: “I feel proud to join such a brilliant and well-run organisation. PSPA plays a pivotal role in providing support, seeking answers and advocating for those affected by PSP & CBD.”

THANK YOU TEAMPSPA A huge thank you to our incredible team of runners who took part in this year’s Great North Run. Together they raised an amazing £21,600.

If this is an event you would like to take part in, keep an eye out for the public ballot in January.

To register a reminder for the January ballot, visit www.greatrun.org/events/great-north-run.

To maximise chances of running in the event, why not apply for a PSPA charity place and enter the public ballot.

FEELING INSPIRED You can apply for our charity places on our website by scanning the QR code.

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OFF TO A TEE The PSPA Golf Day is a treasured Raised annual tradition that PSPA has over hosted since the first gathering in £5,000 November 2010. Loyally attended each year by PSPA founder Michael Koe and his family, the event continues to grow with more teams coming together in support of PSPA. This year’s Golf Day raised over £5,000 to fund our vital information and support services. A big congratulations to Team Bluph who claimed victory on the day! Thank you to everyone who took part. We look forward to another fantastic day on the green in 2026.

NEWS

NEURO2026 We are proud to be teaming up with CurePSP again next year to host Neuro2026. The PSP & CBD International Research Symposium will bring together experts from all over the world to share the latest scientific developments and breakthroughs.

The symposium will showcase PSP & CBD research conducted by world leading neuroscientists and is open to all researchers and healthcare professionals.

Updates about the event will be available next year.

BE A COMMUNITY CHAMPION Are you passionate about raising awareness and inspiring others to take action? Do you enjoy connecting with people and making a difference in your community? If so, you could be the perfect Community Champion for PSPA! We’re looking for enthusiastic volunteers across the UK to represent PSPA at local events and help spread the word about PSP & CBD. As a Community Champion you’ll play a vital role by: • attending local fundraising events and speaking engagements to represent PSPA • acting as a friendly point of contact at events, providing information and answering questions about PSP & CBD and the work of PSPA • supporting fundraising events throughout the year.

In return, you’ll become a valued part of the team, connect with incredible fundraisers and help make a positive difference to families affected by PSP & CBD.

FIND OUT MORE For more information on our new Community Champion micro volunteering role please contact volunteering@pspassociation.org.uk

HELLO TO POOJA We are delighted to welcome Pooja Pandya as our new Communications and Website Officer. Pooja joined the team in October and brings with her a strong background in digital marketing and content creation.

With experience as a self-employed content marketer, Pooja has helped small businesses grow their brand through website and social media content marketing. She also previously worked as a marketing assistant for a travel company.

Pooja said: “I’m looking forward to joining PSPA and strengthening its digital presence to raise vital awareness and better support the PSP & CBD communities as well as researchers."

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PSPAMATTERS

LOOKING BACK WITH GRATITUDE AT MY FOUR YEARS AT PSPA

BY REBECCA PACKWOOD, CEO

WITH TRUSTEES JON AND GREG AT THE LONDON MARATHON

MEETING WES STREETING, THE SECRETARY OF STATE FOR HEALTH TO DISCUSS PSP RED FLAGS

As I prepare to step down as Chief Executive of PSPA, I’ve found myself reflecting on what an incredible journey these past four years have been. Leading PSPA has been an enormous privilege, and I feel blessed to have worked alongside such a supportive Board of Trustees, a dedicated and talented staff team, and an inspiring network of passionate volunteers.

PSPA may be a small charity, but the impact we have made together is something I will always be proud of.

The PSP & CBD community has been the greatest source of inspiration throughout my time here. The courage, determination, and generosity of families living with PSP & CBD, and the friends, families, and supporters who walk this journey alongside them, is remarkable.

REBECCA AT A LOCAL SUPPORT GROUP

We also strengthened our Helpline by recruiting new colleagues in Scotland and Wales.

• Empowering clinicians and driving awareness: We created new Masterclasses for healthcare professionals, released a powerful CBD animation to improve diagnosis, and partnered with ITV News on My Unique Brain to raise public awareness.

• Shaping the future: Implementing and delivering a new strategy, including an investment in a new policy and influencing role.

• Investing in future discovery: Following the Understood Research Appeal we have invested more than £780,000 in research grants and a new fellowship.

Some of my favourite memories are of standing at the cheer point of the London Marathon, cheering on the runners and speaking with families who have travelled miles to support their loved one. Those conversations have been a reminder of why our work matters so much and why we must keep going.

And, of course, none of this would have been possible without our incredible volunteers. Whether running Regional Support Groups, organising events, or offering a listening ear on the Helpline, they are the heartbeat of PSPA. I will miss their warmth, passion and yes, their legendary cakes very much!

But what makes me proudest is the progress we’ve made together:

As I hand over to James Cusack, I do so with huge pride in what we have built together. I will be cheering you all on from the sidelines and cannot wait to see how the charity continues to grow and create a better future for people living with PSP & CBD.

• Diversifying our support: We launched the Link Volunteer Service in 2022, (now developed into the PSPA Befriending Service) new carers’ groups in 2023, and in 2024 we introduced online exercise classes and a counselling service.

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Thank you for welcoming me into this extraordinary community and for making my four years at PSPA so meaningful.

RESEARCH

EXPLORING THE LATEST IN PSP & CBD RESEARCH

Dr Annalisa Casarin

Professor Sanjay Manohar

Mimi Tambi

This summer, PSPA hosted its second online Research Information Session of 2025, bringing together five leading researchers to share their latest work into PSP & CBD. First, we heard from a familiar face, PSPA’s previous Research Coordinator, Dr Annalisa Casarin who is now a Senior Research Fellow at the University of Hertfordshire. Dr Casarin talked about working on a National Institute of Health and Care Research funded project called ImproveAPS (read more about this project on page 18).

Next, Professor Sanjay Manohar, Associate Professor and Honorary Consultant Neurologist at the University of Oxford, presented findings from a recent study co-authored with Professor Michele Hu. Their research explores how cognitive and neuropsychiatric profiles can help distinguish between PSP, CBS and MSA. For example, people with PSP often struggle with speech and show higher levels of apathy, while those with CBS showed higher levels of anxiety and depression.

We then heard from Mimi Tambi, Research Administrator at the Queen Square Brain Bank.

Mimi discussed the Neurodegenerative Disease Human Tissue Project, which aims to expand the Brain Bank into a leading global resource. The team is also exploring barriers to brain donation and how to improve access and understanding for people affected by neurodegenerative conditions.

Tia Gandhi

Aditi Bisen

After the break, Tia Gandhi, a postgraduate researcher at Durham University, shared her study examining how bodily emotion recognition differs between people with PSP and Parkinson’s. Unlike previous research focusing on facial or vocal cues, this study isolates body movement to understand how emotion is processed without context.

Finally, Aditi Bisen presented early findings from a PSPA-funded project on gastrostomy outcomes in Atypical Parkinsonian syndromes, led by Dr Boyd Ghosh and Jade Donnelly. While quality of life scores were similar across groups, those who received gastrostomy feeding had improved survival rates, highlighting an important area for future care decisions.

We’re incredibly grateful to the researchers who share their knowledge with our community.

If you’re working on PSP or CBD research and would like to speak at a session in 2026, please email research@pspassociation.org.uk

"IT WAS SO INFORMATIVE AND GAVE A GOOD INSIGHT INTO WHAT IS HAPPENING IN PSP & CBD RESEARCH RIGHT NOW."

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PSPAMATTERS

INTRODUCING THE UNDERSTOOD FUND How donations to our research appeal are helping us transform PSP & CBD diagnosis, treatment and care.

JON GARRARD OUTSIDE BROADCASTING HOUSE

In 2024 we launched a bold appeal to raise funds to progress research into PSP & CBD. Through the Understood Appeal, we aimed to inject a substantial pot of money to help science get closer to establishing: • A fast and accurate diagnosis – ending years of uncertainty for families • Life-changing treatments – to help improve the quality of life of people diagnosed • Exceptional care – establishing consistent standards of care to people affected across the UK. With your help over the past two years, our bid to raise funds for research has been successful. The Understood Research Appeal in total raised over £780,000!

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AMPLIFYING OUR CALL To amplify our call for the urgent need for more research funding, we secured a BBC Radio 4 Appeal.

The appeal was broadcast from 19 to 25 October, with our Trustee, Jon Garrard, sharing his own personal experience to make the heartfelt call for support.

Over the course of the week our BBC Radio 4 Appeal was live, Jon’s story was heard by thousands of listeners who donated £17,092 for research. A kind PSPA supporter also offered to match fund the amount raised by the BBC Radio 4 Appeal, which means in total we were able to add £34,057 to the total raised by the Understood Research Appeal.

FUNDRAISING

WHAT THE UNDERSTOOD APPEAL WILL FUND

JON IN THE BBC STUDIOS

Thanks to the support of donors, the £780,000 raised by the Understood Research Appeal will be invested in: •F our Small Research Grants up to £25,000 each • One Project Research Grant up to £250,000 •O ne three-year £360,000 PSPA Fellowship in partnership with the Association of British Neurologists.

Jon’s father, Chris was diagnosed with PSP in 2004.

In the appeal, Jon shared the emotional journey of his family’s experience and the urgent need for better diagnosis, treatment and care.

Jon said: “Dad was my strength and my best friend, so watching him deteriorate so quickly was heartbreaking. We felt helpless.

“We’re getting closer to breakthroughs in diagnosis and treatment, but we need donations to the appeal to turn this life changing research into reality. I was incredibly proud to head up the BBC Radio 4 Appeal on behalf of PSPA. I couldn’t be happier with how much it has raised. I know Dad would have been so proud that I was sharing our experience on Radio 4.

It was a lovely thing to do in his memory and I’m very grateful to everyone who donated. By coming together I really do believe we can stop families in the future going through what we did.”

0.5%

0.4%

2.6%

Read page ten, to learn more about the Small Research Grants which have been awarded and will begin in 2026.

Now the funds are beginning to be allocated to research projects, the Understood Research Appeal will close. Instead, the Understood Research Fund will track the progress being made in funded studies, running between January 2026 and December 2030.

With updates tracking outcomes given on a regular basis.

We want to extend a huge thank you to everyone who donated to make this progressive research possible.

Whether your donation was motivated by the journey someone in your life is currently experiencing, or given in memory of someone you have lost, every penny matters and will be used to ensure people’s experiences of PSP & CBD are transformed.

HOW MONEY WAS RAISED FOR THE UNDERSTOOD RESEARCH APPEAL

0.3%

■ Legacies ■ In-memory ■ Direct donations ■ Trusts and foundations ■ Corporate ■ Challenge events ■ Community fundraising ■ BBC Radio 4 Appeal

4.4%

24.9%

£435,973 £88,494 £195,035 £4,000 £2,750 £20,575 £2,368 £34,057

55.7%

11.3%

WANT MORE INFO? To learn more about the Understood Research Fund, scan the QR code or visit, www.pspassociation.org.uk/ research/understood

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PSPAMATTERS

UNDERSTOOD FUND ALREADY POWERING DISCOVERY Thanks to the incredible power of our PSP & CBD community getting behind the Understood Appeal, we are excited to announce four new research grants helping to push forward vital progress in understanding PSP & CBD.

Dr Dianne Lopez

Dr Filipa Henderson Sousa

The money raised from the Understood Appeal has established the Understood Fund, a dedicated source of funding that will drive forward progress by supporting new and innovative research projects.

Back in April, we opened applications for projects up to the value of £25,000. We received 10 proposals, the most we’ve ever had for a small grant round, showing the growing momentum and interest in PSP & CBD research. Here are the four projects funded so far through our Understood Fund.

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. Astrocytes are ‘support cells’ which help the brain clean up waste like misfolded tau, the protein that accumulates in PSP. Dr Lopez will grow human brain cells in the lab to study how astrocytes deal with

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Professor Michele Hu

Dr Sumi Bez

harmful and healthy tau. The cells they grow contain genetic changes that make them produce the type of tau found in people with PSP. Her team will track how these cells break down and release tau to understand if astrocytes help spread tau around the brain, and the potential for new ways to slow or stop the disease in the future. Long term goals are focused on how astrocytes could be targeted in future PSP treatments to protect the brain. The funding from the Understood Fund will support key components of the study such as reagents to help with cell culture, antibodies and use of a specialist microscope for detailed cellular analysis.

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.

In healthy brains, cells maintain a balance of making, folding and breaking down proteins. When this

RESEARCH

process fails and misfolded proteins build up, this triggers a stress response in the cell which leads to cell death. Dr Henderson Sousa’s research will explore how disease-causing genetic changes in the tau gene disrupt proteostasis in neurons and the astrocytes.

someone, with nine different forms of PSP currently identified. TRIM11 is part of the ‘quality control’ system in the brain, helping to clear harmful tau, and it is thought that higher levels of TRIM11 in the brain are protective against misfolded tau.

By inducing stress in cell models, the team will see how these disease-causing mutations affect a cell’s ability to recover, leading to insights that could help identify early warning markers and future drug targets.

The Understood funding will be used to culture and maintain the cells for the study as well as mass spectrometry costs for analysis of samples.

Dr Bez will investigate the effect of genetics on levels of TRIM11 in the brain, how it interacts with tau and will measure TRIM11 levels in patient samples. They aim to pave the way for therapies that may boost TRIM11 levels, to slow PSP progression. PSPA’s funding will cover laboratory costs including the use of specialised equipment, TRIM11 protein materials and detailed data analysis.

USING SMARTPHONES AND AI TO IMPROVE DIAGNOSIS

THE MONEY RAISED

Professor Michele Hu, Nuffield Department of Clinical Neurosciences, University of Oxford

FROM THE UNDERSTOOD

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 UNDERSTOOD FUND

Both diseases often begin with very similar symptoms like slow movement, tremors and stiffness, which often leads to delayed or incorrect diagnoses. This impacts how quickly a patient may receive the correct care or support, or signposting to services like PSPA. The app Professor Hu is going to be testing has been validated in people with PD and has been used to collect data from people with Atypical Parkinsonism.

APPEAL HAS ESTABLISHED

These groundbreaking studies are a crucial step forwards in our shared mission to transform PSP & CBD diagnosis, treatment and care. In the next edition of PSPA Matters, we’ll reveal the recipient of our Understood Project Grant, worth up to £250,000.

By using Artificial Intelligence (AI), the team aim to identify patterns that can distinguish between them.

With a version already being used in a trial within the NHS, the team at Oxford hope new data from this project can be added to the app to be ready for further clinical testing. 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.

UNCOVERING THE ROLE OF TRIM11 IN PSP Dr Sumi Bez, University of Cambridge Our final project takes us to Cambridge where Research Fellow Dr Sumi Bez will spend seven months investigating a gene called TRIM11, which may influence why PSP affects people differently.

TRIM11 has been identified by researchers as potentially influencing the variation in how PSP affects

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PSPAMATTERS

DAVID’S JOURNEY TOWARDS A CURE David’s search for clinical trials offering promising new treatments for PSP took him from his home in New Zealand all the way to England to join the global effort to find a cure.

SARAH AND DAVID BOOTH

For someone as sociable as retired property developer David Booth, his gradual withdrawal from family life was the first sign to his wife Sarah, that something wasn’t right. David also began struggling to find his words and became increasingly unsteady. But it was a change in his eye movements that led to the swift and unexpected diagnosis of PSP. With that news, David started scouring the internet for answers.

“We’ve always been the sort of people to meet things head on,” says Sarah, who has been married to David for 38 years. “And David, especially, is incredibly determined. Once we got the diagnosis, he went straight into research mode. He was on the computer

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every day looking for clinical trials, contacting people all over the world.”

David’s persistence paid off. Earlier this year, the couple left their home in Christchurch, New Zealand, where they have lived since 2003, and moved back to the UK to take part in PROSPER, a ground-breaking international clinical trial to test a novel molecule called FNP-223, developed by the pharmaceutical company Ferrer. The goal is to find out whether this medicine can help slow down the progression of PSP. It is understood that David became the first person in the UK to take part in this study.

PERSONAL EXPERIENCE

DAVID IS THE FIRST PATIENT IN THE UK TO TAKE PART

area before, we decided to settle here as it is so familiar.

BEING PART OF A CLINICAL TRIAL David officially joined the PROSPER trial in May 2025 after completing a rigorous set of eligibility screenings, including brain scans, bloodwork, and neurological assessments. The speed of his diagnosis is likely to have increased his chances of fitting the criteria because he is earlier on in his PSP journey.

“We go to Southampton about every three months in person, and in between we get phone calls from the team,” Sarah explains. The team is fantastic. We see the same people every time, and we can contact them whenever we have questions. It’s very reassuring.”

Sarah also keeps a daily online diary as part of the trial’s data collection. “It’s not an unrealistic commitment,” she says. “It’s part of the routine now.”

Neither David nor his doctors know whether he is receiving the active treatment or a placebo. That’s the nature of a double-blind study but, just being part of the trial has changed their outlook.

David’s enquiries led him to Dr Boyd Ghosh, a Neurologist based at University Hospital Southampton, one of the participating sites for Ferrer’s PROSPER trial. The trial is a randomised, double-blind, placebocontrolled Phase II study designed to evaluate the safety and effectiveness of FNP-223 in slowing the progression of PSP. Ferrer had previously demonstrated in preclinical models that FNP-223 could prevent the buildup of tau proteins. The PROSPER study, involving 220 participants across the US, UK, and EU is designed to confirm the efficacy of FNP-223 in individuals living with PSP. “We contacted Ferrer and that led us to getting in touch with Dr Ghosh. Once we got the information needed, we made the decision to move back to England to try and secure a place on the trial,” says Sarah. With only around 200 known PSP cases in New Zealand, there are no current plans for trials and the couple wanted to be where the research is happening.

The couple travelled to the UK in 2024 to meet Dr Ghosh, after getting referred by a UK GP. In early 2025, they relocated permanently, supported by their daughter, a former nurse, and son-in-law, who moved over with their children and the couple’s two dogs to help.

Sarah said: “We’ve turned the move into a positive family experience. Having lived in the Worcestershire

“Having this opportunity gives David focus and hope,” Sarah says. “He’s someone who gets fixed on something and gives it everything. Instead of feeling helpless, we’ve got something to fight for. Even if this doesn’t help him directly, it might help someone else down the line.”

The trial runs for 52 weeks, with a final follow-up scheduled for May 2026. “I get emotional when I think about the opportunity David has been given,” Sarah admits. “You do all this planning and researching and to have the chance to be involved has been amazing and we are truly grateful.” David nods in agreement.

“I wanted to do something,” he says. “I didn’t want to just wait for it to get worse. This gives me purpose.”

The Booths have also connected with PSPA since arriving in the UK. “We’d never met anyone else with PSP until we came here,” says Sarah. “We’ve joined online meetings and went to a local get-together.

That support is invaluable.”

WANT MORE INFO? To learn more about PSP and clinical trials like PROSPER, scan the QR code or visit www.pspassociation.org.uk/ research/get-involved-inresearch/

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PSPAMATTERS

SUPPORT GRANTS TO MAKE LIFE A LITTLE EASIER ANDREW THORP AND HIS WIFE CATHERINE

OUR GRANTS ARE DESIGNED TO HELP ENABLE PEOPLE TO LIVE AS WELL AS POSSIBLE AS THEIR PSP & CBD PROGRESSES

With PSP & CBD everyday tasks that were once simple can become challenging, and the emotional and financial pressures of adapting to new realities can feel overwhelming. That’s why we fund Support Grants to provide practical help when it’s needed.

Since they launched two years ago, our Support Grants have funded a range of items from mobility aids and home adaptations to specialist equipment and therapy sessions. Our grants are designed to help enable people to live as well as possible as their PSP & CBD progresses. They are also there to help provide support to carers.

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Catherine and her husband Andrew Thorp, who lives with CBD, took an important step in preparing for the future, through voice banking. With a grant from PSPA, Andrew was able to record and preserve his own voice using a microphone and headset funded by PSPA's Support Grant scheme, so that even as his condition progresses, he can continue to communicate using an app, using a voice that feels ‘his’.

Catherine said: “When my husband, Andrew, was diagnosed with CBD we both took early retirement.

We wanted to make the most out of every day and make the most of our time together.

INFORMATION AND SUPPORT

“Even though Andrew is still quite mobile, there are daily frustrations. Simple tasks like tying shoelaces or putting on the dog’s harness is difficult. His speech has also deteriorated. He speaks much more softly now, and if he’s tired it can be hard to understand him.

“At his Neurologist’s suggestion, we were referred to a Speech and Language Therapist, who gave us practical advice for managing his speech and introduced us to the idea of voice banking. She explained that, as Andrew’s condition progresses, he will eventually lose the ability to speak, and that recording his voice now could allow him to communicate in the future using a digital version that still sounds like him.

“THE PROCESS WAS INCREDIBLY STRAIGHTFORWARD. I FILLED OUT THE FORM, ATTACHED THE RECEIPT, AND WITHIN LESS THAN A WEEK, PSPA APPROVED THE GRANT. IT WAS SUCH A RELIEF."

“We’d already heard of voice banking through the PSPA WhatsApp group, where other people with CBD had shared their experiences. The speech therapist explained that, sometimes to capture the best quality recordings, Andrew might need a high-quality microphone and headset. It is often better to use a separate microphone and headset than the built-in laptop microphone. She recommended some models and said that a PSPA Support Grant may be able to cover the costs.

“The process was incredibly straightforward. I filled out the form, attached the receipt, and within less than a week, PSPA approved the grant. It was such a relief. It felt like someone understood what we were going through and wanted to make this next step easier for us.

“With the microphone and headset purchased, Andrew and I spent several sessions recording his voice. The speech therapist visited a few times to help guide us through it, and we sent the recordings to a company called SpeakUnique. They created five versions of Andrew’s voice, and together we chose the one that sounded most like him. The speech therapist, who had worked closely with Andrew, agreed it was a good match. It’s comforting to know that, when the time comes, his voice will still be his.

“IT’S GIVEN HIM BACK

ANDREW BANKING HIS VOICE

“The PSPA Support Grant has given Andrew the chance to preserve something deeply personal and meaningful. Losing your voice is such a profound part of this condition, but thanks to the grant, Andrew has been able to hold on to a part of his identity and independence for the future.”

A SENSE OF FREEDOM.”

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PSPAMATTERS

"IT WAS AN ONLINE SEARCH THAT FINALLY LED ME TO PSPA, AND FROM THAT MOMENT, EVERYTHING BEGAN TO CHANGE."

ANN AND MALCOLM HODGES

Ann cares for her husband Malcolm Hodges, who was diagnosed with PSP in February 2024. With his mobility deteriorating Ann was fearful of falls, making it challenging for them when they went out. A grant from PSPA funded a rollator, giving both Malcolm and Ann the ability to enjoy days out together.

Ann said: “When my husband Malcolm was diagnosed with PSP our world suddenly became very small. I remember feeling utterly lost. It was an online search that finally led me to PSPA, and from that moment, everything began to change.

“At the Kent Support Group I noticed someone was using a rollator. It struck me that it could help Malcolm with his growing unsteadiness. We applied for a Support Grant to buy one. The difference it has made to our lives is hard to put into words. The rollator has given Malcolm back a sense of freedom and it’s really Malcolm’s link to the outside world.

“He is so unsteady, I feared he would fall, even while holding onto me (and potentially taking me down with him). Now, the rollator gives him stability and helps me get him out to coffee shops and garden centres about four times a week.

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“The support didn't stop with Malcolm. I discovered PSPA grants are available to carers as well. Caring for Malcolm is very physical and I had developed a painful knee. When I mentioned needing physiotherapy to strengthen my knee, PSPA stepped in.

“PSPA helped cover the cost of private physiotherapy, which included ultrasound and acupuncture treatments. It’s made such a difference. I feel stronger and have been able to avoid knee, replacement surgery for now.

"Caring for someone living with PSP is allencompassing. I’m always on high alert for falls, and I have a never-ending list of tasks to tackle. But knowing PSPA is on the end of the phone and has a range of services and grants that can help, that’s truly reassuring."

LEARN MORE! To learn more about Support Grants simply scan the QR code.

INFORMATION AND SUPPORT

STAYING WELL THIS WINTER As winter draws in, colder weather, shorter days and the increased risk of seasonal bugs can make life a little harder for people living with PSP & CBD, and their carers.

The season can bring extra challenges around staying warm, getting outdoors, and keeping spirits up, but a few simple steps can make a big difference.

Taking a few calm minutes with your hands wrapped around a mug can also help ease tension and lift your mood.

STAY CONNECTED Cold, dark days can make it harder to see friends and family. Try to reach out by phone, video call or message if you can’t meet in person. Staying emotionally connected is just as important as keeping physically warm. Remember that PSPA’s Helpline, online Support Groups and its Befriending Volunteer Service all aim to reduce isolation and provide emotional and practical support.

KEEP MOVING AND INTERESTED

KEEP WARM Staying warm isn’t just about comfort it’s important for your health. Try to keep the rooms you use most at a minimum of 18°C. Layer clothing, close curtains as soon as it gets dark, and use draft excluders to keep heat in. Hot water bottles, microwaveable heat packs or “warmies” can be wonderful for taking the chill off.

If you are moving around to care for someone, a small portable heat pack can be handy. Check whether you’re eligible for schemes such as the Warm Home Discount, Winter Fuel Payment or Cold Weather Payment on the government website and your energy supplier can advise on the best tariff. You can also join the Priority Services Register with their energy and water company. This means people will get priority support should there be a power cut.

EAT WELL Hearty, warming meals such as porridge, soups, stews and crumbles keep you cosy from the inside out. Keep a flask or favourite mug nearby for regular hot drinks.

A short walk or gentle stretching indoors can boost circulation and lift your spirits. Even light chores count as movement. Get some company and inspiration for your movement by joining our Online Exercise Sessions. Keep your mind active with small projects, hobbies or books, many local libraries run the Reading Well scheme with helpful resources on wellbeing.

STEP OUTSIDE WHEN YOU CAN Wrap up warm and try to get outside for a few minutes of daylight each day to top up your vitamin D and enjoy the fresh air.

Winter may test our perseverance, but with planning, support and a little self-care, we can stay well, warm and connected until spring returns.

i

HOW WE KEEP WARM “Keeping the whole house warm can be quite expensive when you are at home most of the time, not moving around much. We found portable, oil radiators great resources for topping up room warmth, keeping the living room or bedroom cosy for my parents, without affecting their overall gas bill."

Helen, carer

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PSPAMATTERS

TRANSFORMING CARE FOR PEOPLE WITH ATYPICAL PARKINSONIAN SYNDROMES

BY DR ANNALISA CASARIN

ANNALISA PRESENTING AT NEURO 2023

Across the UK, thousands of people living with Atypical Parkinsonian Syndromes (APS) face a daily struggle, often unseen, often misunderstood. Unlike typical Parkinson’s disease, APS includes rare and complex conditions such as Corticobasal Degeneration (CBD), Multiple System Atrophy (MSA), and Progressive Supranuclear Palsy (PSP). These illnesses go beyond tremors or slowed movement; they affect balance, thinking, mood, speech, swallowing, and even vision.

Yet, despite the severity of these symptoms, many people with APS do not receive the care, support, or understanding they urgently need. A new research project, funded by the National Institute for Health and Care Research (NIHR), is set to change that.

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THE CHALLENGE: UNEQUAL ACCESS, UNEQUAL OUTCOMES Around 15,000 people in the UK live with APS. The conditions progress rapidly, and individuals often become dependent on family members or carers within a short time. As their needs grow, so does the importance of timely, specialist, and coordinated care.

Unfortunately, many families report having to battle for basic support, with long delays, misdiagnoses, and limited awareness among health and social care professionals.

Access to quality care shouldn’t depend on your postcode, but it often does. Services vary dramatically across regions, leading to stark inequalities. In one area, someone may receive timely referrals,

RESEARCH

multi-disciplinary support, and adapted home care; in another, they may face repeated emergency hospital visits simply because local services don’t understand the condition.

This inconsistency is not only distressing for patients and carers, it’s costly for the healthcare system.

Avoidable hospital admissions, delayed diagnoses, and poorly coordinated care all increase strain on already stretched NHS resources.

THE AIM: UNDERSTANDING THE GAPS TO BUILD A BETTER SYSTEM The new study, led by researchers and shaped by those with lived experience like the PRIM group (PSPA Research Involvement Members), seeks to understand why people with APS aren’t getting the care they need and what can be done about it.

The team will begin by reviewing existing policies, clinical guidelines, and best practice examples from across the UK. This "realist review" approach will help build a picture of what should be happening when someone is diagnosed with APS. Next, researchers will speak with 24 people living with APS and their carers to hear about their journeys: the barriers they’ve faced, the services they’ve used (or couldn’t access), and what helped or hindered their ability to live well with their condition.

CO-DESIGNED AND CO-PRODUCED WITH PEOPLE WHO KNOW BEST What makes this study stand out is its public contribution. From the outset, it has been shaped by people who have cared for loved ones with APS. Their insight has directed the study’s focus: challenges like poor communication between services, lack of knowledgeable professionals, and the emotional toll of caring without adequate support.

“Experts by experience” will help analyse the data, shape the service map, and co-create materials to share the findings with the wider public, professionals, and decision-makers. By embedding lived experience at every stage, the study ensures its recommendations reflect real-world needs.

A PATH TOWARD FAIRER, SMARTER CARE While APS may be rare, the principles of this research equity, person-centred care, and meaningful co-design are relevant to many conditions where services fall short.

Charities, patient organisations, and communities all have a role to play. By supporting and amplifying this research, we can help ensure that the findings reach those in power, and that change follows. It’s about building a more compassionate, intelligent, and responsive system for everyone who faces the unexpected, the complex, or the rare.

Around 30 Health and Social Care professionals will also be interviewed to understand the pressures and constraints they face in trying to deliver appropriate care. Are there gaps in training? Is the system simply not set up to accommodate rare and fast-progressing conditions like APS? MAPPING THE MAZE: CREATING A VISUAL UNDERSTANDING OF SERVICES The result will be a "system map" – a visual representation of the networks, services, and support systems that people with APS have (or don’t have) access to in different areas.

The research team will then bring together participants, carers, clinicians, and service designers in two collaborative workshops. These sessions will explore potential solutions, drawn from the best examples found across the country that can work within the realities of today’s health and social care systems. The team will then use these ideas to design a questionnaire to ask people affected by APS what they prefer, ensuring that the voices of a broader and more diverse group are heard before any national recommendations are made.

INTERESTED IN TAKING PART? Thank you to those who have already expressed interest in participating. If you are interested in taking part in the project, as patient, carer or professional, please email the study lead at annalisa.casarin@nihr.ac.uk or contact PSPA.

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PSPAMATTERS

BRING HOPE AND COMFORT TO FAMILIES LIKE YOURS Learn how your donation to our annual Bauble Appeal can bring support and comfort to families living with a PSP or CBD diagnosis.

Wherever you are on your PSP or CBD journey, no one wants to feel like they are facing life alone and unsupported. Findings from our recent PSPA survey back this up, with responses highlighting that being connected to others living with similar experiences is beneficial for resilience and wellbeing.

Being part of a like-minded community can bring hope and comfort as Chrys found after his wife, Prema, was diagnosed with CBD in 2024.

various aspects of CBD, and the feeling of not being alone. Without PSPA, I don’t know how I would’ve coped with the impact of the diagnosis. It has literally been a lifeline."

HOW YOUR DONATION CAN HELP In 2024, PSPA connected families through 30 Support Groups, which meet monthly. But this vital face-to-face support is only made possible thanks to the generosity of our supporters and volunteers.

Chrys explains: “By the time Prema was diagnosed with CBD, I had already become her full-time carer, fulfilling her wish to stay at home throughout her illness. Although we weren't short of love, with family and friends visiting us regularly, in those early days after her diagnosis, we felt very much alone. No support was offered. Just a follow-up appointment scheduled six months away.

To ensure we can continue to host regular Support Group meetings across the UK, could you donate to our 2025 Bauble Appeal?

“I am thankful we found PSPA soon after. With their help, we immediately felt the warmth of a supportive community. The Newly Diagnosed Group helped us understand the condition we were facing, replacing fear with knowledge. For me, the Carers Support Group became essential. Sharing experiences, tips, information, and forming deep friendships gave me help and comfort during the hardest time of my life.

Now the Bereaved Carers Support Group is helping me along as I process my loss and move forward without Prema.”

You can dedicate your donation to a loved one, with your personally selected bauble shining brightly on PSPA’s digital Christmas tree or in our head office in Milton Keynes.

Jonathan, who was diagnosed with CBD in 2024, echoes Chrys’s thoughts:

OF THE DIAGNOSIS. IT HAS

"It was a huge shock to be diagnosed with CBD. Few healthcare professionals have heard of the condition, let alone know how to support someone living with it.

“Luckily, I found PSPA. The Support Groups I've attended have been incredibly informative. Sharing experiences, helpful suggestions on how to deal with

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Donating £30 this festive season could help us to continue bringing families together at a Support Group meeting to share information, provide tips and build lasting friendships.

"WITHOUT PSPA, I DON’T KNOW HOW I WOULD’VE COPED WITH THE IMPACT LITERALLY BEEN A LIFELINE."

FUNDRAISING

Please donate to our

BAUBLE APPEAL

DONATE To donate to the Bauble Appeal, and ensure no one faces PSP or CBD alone, scan the QR code, visit www.pspassociation.org.uk/christmas or call us on 01327 322414.

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PSPAMATTERS

PSPA MASTERCLASS ON MOBILITY MANAGEMENT IN PSP & CBD Healthcare professionals from across the UK came together online on Wednesday 24 September for PSPA’s latest educational masterclass, “Falls and Mobility Management in PSP & CBD.” The session attracted 250 health professionals, reflecting the growing interest among clinicians in improving care and outcomes for people living with PSP & CBD. This was the third masterclass of the year delivered as part of our new online education programme, designed to support healthcare professionals in improving symptom management and promoting earlier diagnosis of PSP & CBD. The free Zoom session was led by Jade Donnelly, Specialist Physiotherapist and ACP Coordinator at University Hospital Southampton NHS Foundation Trust. Jade, who has extensive experience in managing complex neurological conditions, provided expert insight into the mobility challenges faced by people living with PSP & CBD, focusing on practical strategies to improve safety and independence.

Participants praised the masterclass for its clear, practical guidance and clinical relevance, with many highlighting how Jade’s expertise enhanced their confidence in supporting patients with PSP & CBD. “Fantastic presentation, building awareness of how to support people with PSP & CBD. Lots of fantastic clinical information which I need to consolidate and improve my practice.”

“It was such a good lecture, so many practical tips, very visual learning, lots of important info.

I thought it was really first class.”

“Perfect session. I’m a nurse but very helpful identifying PSP & CBD, lots to take away and apply to my practice. Thanks for another great webinar.”

The interactive session attracted physiotherapists, occupational therapists, and other allied healthcare professionals, all keen to deepen their clinical understanding and refine their practical skills in this highly specialist field.

“Falls and mobility issues can have a profound impact on the lives of people with PSP & CBD,” Jade explained.

“By understanding the specific movement patterns and progression of these conditions, we can design more effective, individualised interventions that truly make a difference.”

Attendees gained valuable knowledge in key areas, including: • Understanding the unique mobility challenges associated with PSP & CBD, such as postural instability, motor impairment, and gait disturbance.

• Developing tailored strategies to promote independence and safety, using evidence-based approaches to mobility and falls management.

• Recognising and anticipating disease progression, enabling proactive planning and timely adjustments to care.

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MASTERCLASS 2026 The PSPA Masterclass series will continue throughout 2026, with the first taking place on 25 March, offering further opportunities for professional development and knowledge sharing among healthcare practitioners dedicated to improving the lives of those affected by PSP & CBD. For details of upcoming sessions and resources, visit www.pspassociation.org.uk.

INFORMATION AND SUPPORT

MEET PEGGY, PSPA’S NEW HELPLINE MANAGER PSPA is delighted to welcome Peggy Newton, our new Helpline and Support Services Manager. With a career spent developing support services for people and their families, Peggy brings an understanding of what it means to help people through some of the most difficult moments in life. In her own words, Peggy shares her first impressions of PSPA, and how she wants to help develop the charity’s support in the future.

“I’M GENUINELY EXCITED AND PROUD TO BE PART OF THE PSPA TEAM."

“When my children were little I decided to take on some volunteer work. I started volunteering with Home-Start, supporting families with children under five. It was just a few hours a week, but it sparked something in me. That’s really where my love of support work began.

“When my children were in school, I decided to study for a degree in social work. After graduating, I worked as a Family Support Worker, focusing on early intervention to prevent families from reaching crisis point.

“Over time, I became more involved in adult education and worked within the education system, supporting young people and their families. But I found it increasingly difficult when the level of support I knew was needed didn’t match the priorities of the local council. That’s when I started looking for a role that aligned more closely with my values.

“That led me to Young Lives vs Cancer. I worked across the Thames Valley area supporting families emotionally, practically, and socially, either on hospital wards at John Radcliffe or through home visits. I ran support groups too. It was emotionally challenging work, often involving children and families facing new diagnoses, difficult treatment journeys, or end-of-life care. I learned so much, and I absolutely loved it,

especially seeing the real impact good support could make.

When I saw the Helpline Manager opportunity come up at PSPA, I was drawn to the charity’s smaller, more personal approach. The focus on delivering real support to people living with PSP & CBD, and their carers, really stood out. At interview, I felt that excitement and now I’m here, I feel genuinely at home.

“As Helpline and Support Services Manager, I oversee the operation of our Helpline and the delivery of support services provided through it. This newly expanded role allows me to focus on identifying opportunities for improvement, enhancing accessibility, and ensuring that everyone who reaches out receives the highest quality of care and support.”

“In my first few weeks, I’ve met so many warm, welcoming people and have been learning about the Helpline, the various roles within the charity, and diving into resources and podcasts to better understand both conditions. Over the next few weeks I’m going to be joining support groups to meet more of our PSP & CBD community.

“I’m genuinely excited and proud to be part of the PSPA team, I’m looking forward to helping the charity grow its services and make a lasting difference for everyone affected by PSP & CBD.”

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PSPAMATTERS

TOGETHER ON OUR PATHWAY TO PROGRESS This summer, family, friends, neighbours and colleagues took to footpaths, coastlines and countryside trails across the UK and beyond, all to take part in our Pathway to Progress fundraising walk.

Rachel Mason

John Maskill

Natalie and Carol

Leslie Ferrar

Valerie Richardson

Lali Shurrey

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Mary Crackles

FUNDRAISING

With match funding, our incredible community raised more than £90,000 for PSPA. From family strolls to 84 mile coastal treks, every step taken is strengthening our fight against PSP & CBD. Here are just some of the incredible people who made this year’s Pathway to Progress one to remember.

Rachel Mason

Valerie Richardson

Rachel Mason and her family got together this summer to raise money and awareness of PSP & CBD and through their 5km group walk. They raised over £2,290 and more than 40 loved ones joined their walk to help raise awareness.

For the third year the Richardson family organised their summer walk for PSPA in memory of their loved one, Alan. Members of the family have also taken part in events like the Great North Run.

John Maskill

£21,000

£2,290

£1,700

Walking in memory of his wife, Suzanne, John took on the 21 mile walk from Whitby to Scarborough with his step-daughter Naomi. Together they made some fantastic memories and raised an incredible amount for PSPA.

Natalie and Carol

£2,500

Longtime friends Natalie and Carol took on the 22 mile circular walk of Cheltenham’s three hills, in honour of their mums. Natalie’s mum Helen has PSP, and Carol’s mum Isobel has CBD.

£3,150

Leslie Ferrar With almost 700 miles travelled and multiple countries explored, Leslie’s family have embraced this challenge right from the very beginning in honour of Leslie’s aunt Beth, who is living with PSP.

Lali Shurrey

£2,400

In a corporate challenge, the UKINOR team completed a 12.6 mile hike for PSPA in support of their colleague Lali who has a family member living with PSP.

Mary Crackles

£7,600

The Crackles family organised an awareness walk, bike ride and BBQ, to honour their loved one Mike, and his journey with CBD.

Thank you to everyone who took part. Your efforts will enable PSPA to provide its vital support and information services including our guides, Support Groups and Support Grants.

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PSPAMATTERS

POLICY AND INFLUENCING

PUSHING FOR BETTER CARE FOR PEOPLE WITH PSP & CBD MARK JACKSON, DIRECTOR OF POLICY AND INFLUENCING

More than 260 of you wrote to your MPs, sharing personal stories and calling for change. You highlighted the need for better training for NHS staff, involving condition experts in assessments, and fully funding the system. Thanks to your efforts, PSPA was able to engage with several MPs, with written questions to the Secretary of State for Health & Social Care on NHS CHC. Thank you to everyone who wrote to their MP and contributed to the #FixCHC campaign. Every email has helped raise awareness and push for a fairer CHC system for people with PSP & CBD. I’d also like to thank everybody who has completed the PSPA Survey 2025.

Your feedback shapes everything we do; from the services we provide to the campaigns we undertake on your behalf. Nearly 500 people completed the online survey this summer, and paper copies have been sent to those who couldn’t take part online.

One of our top priorities has been shining a light on the challenges many people with PSP & CBD face in getting access to NHS Continuing Healthcare (CHC).

CHC is a package of care provided outside hospital for people with complex, ongoing health needs. For those living with PSP & CBD, it can be life-changing, covering the cost of care and supporting joined-up, personcentred services.

Our State of NHS Continuing Healthcare report, published in May, found that fewer than one in five people in England and Wales who applies for the ‘standard pathway’ of CHC receives it. Many face long waits and there are stark postcode lotteries. These findings reflect what we hear from our community, with many describing the system as “broken.”

In response, we launched our #FixCHC campaign as part of June’s PSP & CBD Awareness Week.

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Early findings show that many familiar challenges remain, from long waits for diagnosis, frequent misdiagnosis (often as Parkinson’s), and a lack of understanding about PSP & CBD among healthcare professionals. Carers have also told us about the emotional and physical strain of caring, and the toll it takes on their wellbeing.

If you’ve received a paper copy but haven’t yet sent it back, please do. The more feedback we receive, the better we can represent the PSP & CBD community and ensure your priorities shape our future plans.

We’ll share the results from the survey in PSPA Matters next year.

Looking ahead to 2026, we’ll continue to raise the profile of PSP & CBD among policymakers and healthcare leaders. Plans include hosting a Westminster briefing event, attending key medical and care conferences, and keeping PSP & CBD firmly on the agenda in national debates from NHS and social care reform to discussions on assisted dying.

Thank you once again to everyone who has supported our work this year. Together, we’re ensuring that the voices of people affected by PSP & CBD are heard.

VOLUNTEERING

A DAY OF CONNECTION Volunteers from across the country gathered in Nottinghamshire in September for PSPA’s annual Volunteer Development Day, a two day event designed to support and thank volunteers.

Held at Eastwood Hall, the gathering brought together 24 volunteers and PSPA staff for a packed programme.

Designed to equip volunteers with new knowledge while offering space to connect with one another, the weekend began with a relaxed evening meal on Friday.

For many volunteers, it was their first time meeting face-to-face.

“I really enjoyed the day and the evening before, when we all had time to socialise and get to know each other,” said Sally Reynolds, a PSPA volunteer who led an informative session on grief and loss during the event. “It was lovely to be with so many people I had only met online before.”

Sally’s session drew on her years of experience in hospice care and bereavement support, as well as her experience of PSP. Sally invited the volunteers to think about grief not just in terms of death, but as something that touches daily life.

“I wanted to surprise people and use images and ideas they may not have come across before,” Sally explained. “I also felt it was important to give some examples from my own experience of caring for my husband. Grief is so universal, even animals experience it, and yet it’s still not well understood.

Saturday’s programme included presentations from six PSPA team members, offering updates on services, fundraising, research and communications. The morning sessions gave volunteers insight into the organisation’s priorities and developments, helping them feel even more connected to the wider mission of PSPA.

“Good to be together with other volunteers, share experiences and make connections.”

“Found session about understanding grief and loss very valuable. Also got the opportunity to chat to new volunteers, particularly those with a different role.”

“Great networking opportunities and got the chance to learn about roles I don’t currently do.”

“Fabulous. There was so much useful information. Fun and engaging. It was good to meet other volunteers and share stories and information.”

The afternoon featured breakout groups focused on volunteer roles, including support groups, befriending, education and Helpline services. Each group reflected on what’s working, what could be improved and shared ideas for the future.

As the day came to a close, volunteers shared reflections. As one volunteer put it: “It was good to meet other volunteers and swap stories and information. A wonderful day.”

SALLY REYNOLDS, PSPA VOLUNTEER

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PSPAMATTERS

HELPING RAISE FUNDS AT THE LONDON WINTER WALKS

MARY ANN PASHIGIAN AND HER FAMILY DO THE WINTER WALK IN MEMORY OF AUNT SU

“AN ICONIC WALK FOR MY INCREDIBLE AUNT”

brain autopsy by Massachusetts General Hospital posthumously revealed.

Last January, Mary Ann Pashigian completed the London Winter Walk to raise money for PSPA with five members of her family. They were walking in memory of Aunt Su. Taking on an iconic walk in the capital felt like the perfect way to honour Su, whose spirit of adventure saw her hike in far-flung places from Antarctica to the Galapagos. Their six-strong team of ‘Su’s Supporters’ raised over £900.

“When she got her diagnosis, she faced it head-on.

She told me, ‘I’m going to make the most of the time I’ve got left,’ and that’s exactly what she did. She began to direct her life with purpose, grounded in her early Lutheran and later Catholic faith.

Mary Ann said: “Doing the Winter Walk for PSPA was the perfect way to honour my aunt Su. Su faced PSP with great determination and remained in control until her final days.

“Su was a lifelong New Yorker, having lived in the city for over 50 years. In 2019, she started experiencing health issues that persisted. She kept going to the doctor, but no one could figure out what was going on.

“Su read voraciously and was particularly eloquent, having had a thriving 40-year career in the fashion industry. Watching her lose the ability to express herself was heartbreaking. She was finally diagnosed with PSP in 2022. Her own mum also had PSP, a

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“My aunt accepted support with so much grace, whether it came from hospice, medical professionals, or carers. She made peace with her diagnosis and educated herself every step of the way. She wasn’t afraid. In her last months, together with her death doula Bob, a member of her care team, Su crafted a legacy and farewell document, recapping the key events of her life with a tribute to all those whom she cherished. Bob read this document at her Celebration of Life ceremony this past February on what would have been her 78th birthday.

“Su died in November 2024. The Winter Walk was just two months later. We knew we wanted to do something in her memory. Something that felt meaningful. A month earlier, my husband had run the Chicago marathon in her honour, wearing a t-shirt with her image screen printed on it. But when I saw the

FUNDRAISING

Winter Walk listed on PSPA’s website, I knew this was something the whole family could do.

“We invited family from America to come along and my brother and two cousins flew over. My husband, daughter and I joined them on the walk. It turned into a beautiful day of remembrance, despite the non-stop rain. We walked along the Thames, past scores of iconic London landmarks, laughing, sharing memories, and just enjoying being together.”

“I’VE DONE CHARITY WALKS BEFORE, BUT THIS ONE WAS CLOSE TO HOME” Last year, Malcolm Doughty, his wife Ann and their family came together to take part in the Winter Walks for PSPA, raising an incredible £4,000 for the charity. Ann, who is living with PSP completed the 10km walk in her wheelchair, accompanied

by Malcolm, daughters Kirsty and Kate, and granddaughter Gaby.

“It felt especially meaningful because my aunt had been such an adventurer. She’d hiked all over the world and loved being outdoors hiking. So walking 10k in her memory, in a city she had visited and loved, felt like exactly the right way to celebrate how much she meant to us.”

I met a brother and sister in their early 30s who had sadly lost their mum to PSP just the year before. It makes you realise you’re not alone, even though it’s heartbreaking to hear other people’s stories.

“Outside of the walk, I’ve also raised money by donating profits from my Avon sales. I chose a popular product to sell to raise funds for PSPA, and I’m planning to do it again after Christmas. I’m also very tempted to do the Winter Walk again too!"

The walk, which followed a route from the Oval Cricket Ground along London’s South Bank and back, turned into a memorable family weekend.

Malcolm said: “I’ve done walks for other charities in the past, but this one was closer to home.

“When Ann was diagnosed with PSP I contacted PSPA straightaway. For the past three years we’ve attended the Kenilworth and Rugby Support Groups. It’s been so helpful to speak to others and share experiences. We’ve learned a great deal from the group.

“We wanted to do something to support the charity.

We made a weekend of it with a family reunion in London. It was nice to connect with relatives and also do something together to raise money for the charity. We even got a medal at the end.”

For Kirsty the walk was a good opportunity to raise awareness. Kirsty said: “It was a time for us to all be together doing something positive to raise awareness of PSP. We all wore PSPA t-shirts and before we’d even started, people were coming up to me to share their own experiences of PSP.

MALCOLM, WIFE ANN AND THEIR FAMILY

SIGN UP TODAY! Gather your family and friends to create special memories, raise awareness and funds at the London Winter Walk on Saturday 24 and Sunday 25 January 2026. To sign up simply scan the QR code or visit www.pspassociation.org.uk/events-list/london-winter-walk

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PSPAMATTERS

THE VITAL SUPPORT OF OUR VOLUNTEERS Volunteers are a vital part of our support services. Some volunteer roles require regular commitment, such as becoming a Support Group Coordinator or a Helpline Volunteer. Others are more flexible, like micro-volunteering tasks that can be completed in short bursts of time.

Here two volunteers share how they volunteer for PSPA and their personal reasons for getting involved.

“AS A HELPLINE VOLUNTEER YOU HAVE TO REALLY UNDERSTAND THE CONDITION SO YOU CAN OFFER THE RIGHT SUPPORT. " “From my teaching career I’m very comfortable with presenting. So becoming an Education Volunteer felt like a good fit and was a very practical way that I could raise awareness about PSP & CBD. MANDY SMITH

“VOLUNTEERING ENABLES ME TO USE MY SKILLS TO HELP THE CHARITY” Mandy Smith is both an Education Volunteer and a Helpline Volunteer. Drawing on her background in education and her personal connection to PSP, Mandy uses her skills and experience to raise awareness and support others affected by the condition. Here, she shares what volunteering means to her.

“When my uncle was diagnosed with PSP around seven years ago he was just 62. It was a huge shock for our family. He had always been fit and active.

Despite losing his independence to such a debilitating condition, he has shown only immense courage and bravery and this has been inspiring.

“Since his diagnosis, friends and family have raised money for PSPA through marathons and sponsored walks. That’s how I first came across the charity. As I’ve retired from my job as Assistant Headteacher to help care for my grandchildren, I have more time on my hands, so I decided to volunteer.

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“Soon after completing my training I got my first presentation request. I was asked if I could deliver a Zoom session to a care home in Warwickshire. I’ll admit, I'm not the most tech-savvy person. Luckily, my daughter, who’s also a teacher, helped set up the Zoom and manage the slides from her end. The care home staff were really engaged. We ended up having a great discussion.

“Alongside the educator role, I’ve also trained as a Helpline Volunteer. This has been a very different volunteering experience. The training is quite detailed and involves a lot of reading. Naturally as a Helpline Volunteer you have to really understand the condition so you can offer the right support.

“I joined the Helpline rota in October and have five evening shifts allocated until Christmas. During the training I listened to a couple of calls, both from elderly people. It really brought home how involved caring is, and how much carers have to do. Both calls also highlighted how people need information, but they also simply need to talk to someone who understands what they are dealing with. Volunteering for PSPA is my way of contributing, of supporting my uncle, and of helping others who are affected by PSP & CBD.”

VOLUNTEERING

“MICRO VOLUNTEERING FITS INTO MY BUSY LIFE” Micro-volunteering is ideal for those with busy lives, offering opportunities to contribute without timeheavy commitments. Jill Kent wanted to find a way to give back to PSPA, but with a full-time job and a family to care for, she needed a role that could fit around the demands of daily life. Here she shares her recent micro volunteering experience and her motivations for getting involved.

“I FIRST FOUND THE CHARITY ONLINE ABOUT A YEAR AGO, WHEN A CLOSE FAMILY MEMBER WAS DIAGNOSED WITH PSP."

“I first found the charity online about a year ago, when a close family member was diagnosed with PSP. My relative lives abroad so I feel a sense of helplessness being so far away. They’ve gone from being an incredibly active, capable person to someone who’s now managing to walk but can’t do much else. It’s tough watching that change from a distance. There’s not a lot I can do for them day-to-day, so I decided to do something to help others affected by this devastating condition.

“I looked through the volunteer roles for PSPA and came across micro volunteering. This role offered something I could do in small, defined chunks of time.

My first micro volunteering experience was helping out at the Volunteer Development Day (page 27).

“It was wonderful to meet other volunteers and hear the many ways volunteers contribute to the charity. It was inspiring to see the commitment and passion in the room. Hearing people’s personal stories, why they got involved and how PSP or CBD has touched their lives, reminded me that I’m not alone in this.

“That sense of community and shared understanding helped me to feel part of something. I had the most wonderful time and I’m looking forward to my next volunteering moment.”

JILL KENT

If you’re considering volunteering with PSPA, now is a great time to get involved. Just like Mandy and Jill, you can find a role that fits your life, uses your strengths, and makes a meaningful difference to others.

Do you have a few hours to spare each month to support the PSP & CBD community?

We are currently looking for Helpers to assist with the following groups:

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• Two volunteers needed to assist the Devon and Cornwall Support Group Coordinator with groups in Okehampton and Truro.

• One volunteer needed to support the monthly Recently Bereaved Carers Zoom group. You’ll need basic Zoom skills and experience or knowledge around grief and loss.

• One volunteer needed to assist the Portsmouth Support Group Coordinator.

If you're interested in these roles, or other volunteering opportunities please get in touch with Lavonne McCormack, Volunteering Coordinator, at volunteering@pspassociation.org.uk.

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PSPAMATTERS

BEING BUSY HELPS ME REMAIN POSITIVE After living a healthy and active lifestyle for many years, it was a shock when Graham Wright was diagnosed with PSP in January 2025. Once the shock subsided, Graham and his wife, Ruth, set about preparing for the future and upholding relationships to keep them busy and positive. Here, he tells his story.

GRAHAM WITH HIS WIFE RUTH

“I’ll admit I had probably been brushing off some of my initial symptoms for much longer than I should have. I developed a bit of a lopsided walk and balance problems, which led to numerous backwards falls.

quickly. I think my GP sending the Neurologist a video of me walking, perhaps aided this. My PSP diagnosis came within weeks of being moved to a specialist Parkinson’s team at the hospital and after the results of some scans.

“After around four years of living with these progressing symptoms, my wife finally pushed me to go to my GP and get things sorted. I received a direct referral to a Neurologist and appointments lined up

“The diagnosis was quite a shock. Up until around 2000, I had been a very fit and active man. I ran regularly, not just on my own, but also weekly with a group. With one friend I often took on a running

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PERSONAL EXPERIENCE

GRAHAM WAS A KEEN RUNNER

challenge like the Great North Run, to raise funds for charities. To go from that to the debilitating symptoms and diagnosis, was a lot. Initially it was difficult and took some time for us both to wrap our heads around what PSP was and how it would impact our lives.

“Once the shock had subsided, we set about planning for the future. Already being cared for by a healthcare team that has good knowledge of PSP really helped this to progress fast. It took just weeks to have assessments with physiotherapists and occupational therapists in the team, who suggested the right aids and adaptations for me and how my PSP is likely to progress.

“I now use a walking stick to give me a little more stability. And we’ve moved our house around, transforming our dining room and summer room into bedrooms downstairs and investing in a wet room on the ground floor too.

“I am not currently at the stage of needing to use the downstairs facilities, I can still currently make it up to the bedroom and bathroom safely. But it is reassuring to know things are in place, as and when I need them.

“I couldn’t possibly run now my balance is so bad, which is sad, but I keep busy. Being busy helps us to remain positive and uphold social connections with our friends and family. Things are just at a different pace now.

“I do stay in touch with one friend from the running group, this helps me to maintain a good friendship and stay up-to-date with news from the group.

GRAHAM'S GARDEN

“I ALSO DO ENJOY MY GARDEN STILL. I DO HAVE A GARDENER COME IN TO HELP WITH THE BIGGER MAINTENANCE JOBS NOW, BUT I DO THE SMALLER ONES." We eat out with friends we know well, people I am comfortable seeing the changes in me that are occurring. And family visit regularly too.

“I also do enjoy my garden still. I do have a gardener come in to help with the bigger maintenance jobs now, but I do the smaller ones, potting and repotting plants and vegetables, watering, that sort of thing. Tasks that sometimes frustrates my wife – as I can be out in the garden for hours! Falling can still be a problem; I fell backwards a couple of times this summer. But the sunny weather this summer has enabled me to be in the garden a lot which I find uplifting.

“I know things will change, that there will come a time I can’t get out for meals or potter around the garden, but for now I try to be philosophical and remain as busy as I can be.”

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PSPAMATTERS

MAKING MOVES TO PROMOTE PSP & CBD How we worked with the Movers and Shakers Podcast to broaden our awareness raising reach.

The Movers and Shakers podcast features a group of famous friends, gathering regularly to share experiences of living with Parkinson’s disease. Since its launch in 2023, we’ve been aware and following the podcast, wondering how we can get PSP & CBD discussed by the presenters, which include Jeremy Paxton, Rory Cellan-Jones, Gillian Lacey-Solymar and Mark Mardell.

It really struck me about how many people are affected by these conditions and how few people have heard of them. I felt it would be important to highlight the conditions on the podcast and help people living with a diagnosis feel less alone.”

After reaching out with various ideas, we finally received an invitation to take part in an episode of the award-winning podcast with Rory Cellan-Jones in May.

On 9 June, we headed to Notting Hill in London to meet Rory and the team to record the podcast episode. PSPA Supporter, Lisa Rodrigues, and her husband, Mike, joined Rebecca, our CEO, to give insight into PSP & CBD, alongside Karl Perkins who is living with Lewy Body Dementia.

Rory said: “We’d been approached by a few people about different Atypical Parkinsonian Syndromes.

Rory added: “On the day of the recording, I was a little apprehensive about meeting Lisa and Karl.

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AWARENESS

WE FINALLY RECEIVED AN INVITATION TO TAKE PART IN AN EPISODE OF THE AWARD-WINNING PODCAST WITH RORY CELLAN-JONES IN MAY. But they both quickly put me at ease. Despite such a terrible diagnosis, there’s something quite joyful about Lisa, so it really was a pleasure speaking to her.

I’m glad we decided to record the episode and hope it helps raise awareness and make people feel more seen.”

During the episode, you can hear Rebecca introduce the conditions and common symptoms people experience. Lisa then provides an intimate insight into her diagnosis of CBD. As well as detailing how her symptoms have progressed and what that has meant in terms of changes to her lifestyle. Despite acknowledging the sadness, she feels about the changes CBD has brought to her personality and routine, Lisa’s zest for life and fun, shines through as she shares how she makes the most of life whilst she can.

Lisa says of the experience: “Before my CBD symptoms began, around nine years ago, I was the life and soul of every party and gathering. But then something changed. I became clumsy and weaker along my right side. I was regularly falling off the step at my aerobics class, and unable to coordinate the movement to swim, whilst on holiday. It was a confusing time.

“Doctors initially diagnosed Vertigo Migranous, but it just didn’t feel right, so I asked for a second opinion and more investigations. When I finally received my CBD diagnosis, I felt like it couldn’t be right either.

Me, diagnosed with a terminal condition? I was experiencing multiple different symptoms but no way terminal. But seeing PSPA’s literature, made me realise my symptoms ticked every box. So, I had to just accept it and get on with my life.

“Experiencing a misdiagnosis, and the confused looks of peoples’ faces when I explain what condition I have, has meant raising awareness has been important to me. It was a privilege to be part of the ‘Movers and Shakers’ conversation. By sharing my story to listeners, I hope to provide clarity and comfort to others who may be on a similar journey and show how to live a full life for as long as you can.”

WANT TO LISTEN? You can listen to the Movers and Shakers Podcast featuring Rebecca Packwood and Lisa Rodrigues simply by scanning the QR code.

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PSPAMATTERS

“THIS FEELS LIKE THE RIGHT WAY TO HONOUR TONY” Jackie Brierton is taking on a new challenge as a Volunteer Support Group Coordinator for East Central Scotland.

Having cared for her husband Tony, who was diagnosed with PSP in his 80s, Jackie understands the challenges of living with the condition and the importance of connection. Now retired, she decided to volunteer as a Support Group Coordinator, to help people affected by PSP & CBD find connection to reduce isolation. Here, she tells her story.

“Back around 2016, my husband Tony began showing small but worrying signs that something wasn’t quite right. One of the first things I noticed was that he kept falling backwards. At the time we thought it might be related to him needing a hip replacement, but following the operation, things got worse.

“Doctors initially suspected Parkinson’s, but eventually a consultant told us it was PSP. He was very honest.

He said it was a degenerative condition, and there wasn’t anything they could do to stop it. Tony was already 83 by then, but he had always been incredibly

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fit and active. He was running well into his 70s, and the diagnosis hit him hard.

“At the time, I was managing an organisation, and I had to make a decision about whether to step away from that role. But Tony was adamant he wanted me to continue to work, so we secured carers to help Tony during the day.”

“RESEARCHING THE CONDITION I CAME ACROSS PSPA. THE RESOURCES, INFORMATION AND ONLINE FORUMS BECAME AN ABSOLUTE LIFELINE."

VOLUNTEERING

FINDING PSPA AND THE IMPORTANCE OF CONNECTION “Researching the condition I came across PSPA. The resources, information and online forums became an absolute lifeline. I would often visit the forum just to read people’s experiences. It was reassuring to know I wasn’t alone, even if we were scattered across the country. Sadly there wasn’t an in-person support group close to us, but if there had been we would have attended it.

“As Tony’s condition progressed, his mobility declined rapidly. He needed a hospital bed in the house, a hoist and eventually, a PEG for feeding. He lost the ability to write, which as a journalist and writer was difficult for him to accept. It was a painful, challenging time, but being able to connect with people who understood what we were going through made such a difference.

“One of the biggest challenges, I found, was navigating all the different professionals involved in Tony’s care from community nurses to consultants and occupational therapists. Everyone seemed to operate in silos, and coordinating all of it was left to us.

“Tony died in February 2020, just a few weeks before the first COVID lockdown. The transition into grief and then immediate isolation was incredibly hard. It would have been helpful to have been able to attend a support group at the time.

“Not long after, I connected with another carer in Edinburgh whose family member had PSP. We were able to support each other and talk openly about our experiences. That connection helped me to process Tony’s illness in a way I hadn’t before.”

“THIS FELT LIKE THE PERFECT ROLE” “Until recently, I hadn’t been in a position to volunteer and help out with fundraising appeals and donations where I could. But now that I’ve stepped back from full-time work, I finally have the time to give more.

That’s when I saw that PSPA was looking for someone to take on the role of Support Group Coordinator for East Central Scotland. This felt like the perfect role for me. I have experienced how important connection is and I’d like to help others connect with those who understand.

“I’ve completed a couple of online training sessions and have spoken with the Volunteering Coordinator about what the role entails. We’ve talked about the importance of balancing face-to-face meetings with online options. I think there’s huge value in both.

We’ve learned during COVID that Zoom can work well, especially once you’ve built a connection in person. But face-to-face is also really important where possible.”

HONOURING TONY’S LEGACY “Tony was an amazing man, an accomplished journalist and humorous writer, with a passion for jazz and whisky. He wrote for The Scotsman, contributed to jazz magazines, reviewed hundreds of concerts, and provided expert articles on all aspects of the whisky industry. He had a brilliant and quirky sense of humour. We still have boxes of his newspaper clippings covering a career of more than 50 years. He was warm, curious, and deeply sociable, the kind of man who never talked about himself but was always genuinely interested in others.

“I recently remarried and my husband, Bill, is also a jazz fan. He has been hugely supportive in my desire to volunteer in Tony’s memory. I think offering support to others who are now walking the same road we once did, feels like the right way to honour Tony.”

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EXPANDING OUR NETWORK We want to expand our network of Local Support Groups and are looking to set-up new groups in Liverpool, Lincolnshire and South Wales (ideally in Newport, Cardiff or Swansea).

To make this happen, we’re looking for volunteers to take on the roles of Support Group Coordinator or Support Group Helper.

If you are interested please contact Lavonne, Volunteer Coordinator on volunteering@ pspassociation.org.uk to find out more about the roles and what’s involved. Even if you live in a different area, but are interested in volunteering, we’d still love to hear from you so that we can explore opportunities based on local demand.

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PSPAMATTERS

TO ALL OUR SUPPORTERS

£770 ROTHERHAM SHOW John Fearnside and the South Yorkshire Support Group raised almost £770 at the Rotherham Show with a family friendly treasure hunt, tombola and a charity table sale. A fantastic team effort!

£325 £3,080 MADE OF IRON In memory of his friend Terry, Erem Derimel has taken on a series of tough physical challenges including the Inverness Half Marathon, Loch Ness Etape, Bolton Ironman and most recently the Inverness Marathon. He has raised an incredible £3,080.

Truly made of iron!

£1,000

£5,000 BOSTON BOUND Louis Jones ran the Boston Marathon in support of his fiancé’s family. Louis raised over £5,000 for PSPA, an incredible amount that will help people living with PSP & CBD.

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READY, STEADY BAKE! At just 11 years old, Alexis Ruddick, made a huge impact when she decided to raise money for PSPA. She was inspired by her grandfather who is living with PSP. Alexis created her own drinks, baked biscuits and hosted a fundraising stall. She worked so hard to make it happen, and her family are very proud!

MARATHON MILESTONE Running in memory of his Grandpa, Will Robinson ran the Edinburgh Marathon raising just over £1,000.

He said: “Taking part in the Edinburgh Marathon has been incredible, and it’s been a true privilege to support the PSPA throughout the entire journey."

FUNDRAISING

£380

FOR BOB In memory of his wife’s Uncle Bob, Steve Lamb took on the Middlesbrough 10K and smashed his target, raising £380 for PSPA.

£960

£745

RUGBY BAKES Led by Support Group Coordinator Jenny Knight, the Rugby Support Group hosted their annual bake sale at Wren Hall, raising over £960 with their delicious homemade treats.

PICTURE PERFECT In honour of her mum, recently diagnosed with PSP, Christy Evans hosted a fundraising photoshoot capturing precious family moments. Her heartfelt project raised a fantastic amount.

TEAM POWER The HR team at Central Bedfordshire Council, led by Sarah Reed, have joined forces to hold a series of events including a sponsored walk, leaving do and a Christmas raffle, to raise funds for PSPA. The team have so far raised over £500 and counting.

£500

£250

£555 JACK AND CALLUM’S 10K Friends Jack and Callum took on the Men’s Edinburgh 10K in September for PSPA. The pair smashed their target.

£540 INTO THE WOODS Sue Warner, with Gary and Christine at Lodge Farm, hosted a Woodland Open Day with raffles, art sales and woodland walks. The day was a big hit and raised £250.

NORWICH STEPS OUT The Norwich Support Group did a sponsored five mile walk in Eaton Park, followed by a picnic. Their efforts raised over £500 for PSPA.

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MAKE A

DONATION

TO OUR BAUBLE APPEAL

To provide comfort and support to families living with PSP & CBD SCAN THE QR CODE TO DONATE TO OUR BAUBLE APPEAL!

PSPA Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes MK9 3BN 01327 322410 | info@pspassociation.org.uk | pspassociation.org.uk Registered charity number England and Wales 1037087 and Scotland SCO41199.