The PSP Association

Helping people living with Progressive Supranuclear Palsy & Corticobasal Degeneration to live the best life they can #TeamPSPA 🧠

[The PSP Association @PSPAssociation]

Our 2025 Impact Report is out! Last year, we delivered vital training to health and social care professionals, funded innovative research, and helped drive progress in diagnosis and care for people with PSP & CBD. See the highlights: https://t.co/zGBfFqixDf #ImpactReport2025

[The PSP Association @PSPAssociation]

Thank you for taking on the London Marathon for PSPA! We look forward to cheering you on the day 💜🧡

[Matt Webley @mrwebleyteach]

Delighted to have secured a spot to run the @LondonMarathon for #teampspa @PSPAssociation in memory of my Dad, Peter. I would be very grateful if you have a read through my fundraising page! ⬇️

https://t.co/yl9B45BbOH

[The PSP Association @PSPAssociation]

Have you read the latest edition of PSPA Matters, as usual we have a great variety of stories, updates and interesting reads for you to explore. You can download the virtual copy, or if you prefer, listen to the audio files or podcast: https://t.co/t08vSUPKTr #magazine

[The PSP Association @PSPAssociation]

Our 2025 PSPA #Survey #Report is out! We heard from 650 people with PSP or CBD and their carers. 90% lost independence, 84% say the impact is severe, and 60% regularly experience depression, anxiety, or stress. Read more: https://t.co/nDe0fvFgNI

[The PSP Association @PSPAssociation]

67% of people with PSP & CBD wait up to 2 years—or longer—for a #diagnosis (PSPA #Survey Report). Early recognition is vital. Our Introduction to PSP & CBD guide offers key info for #health & social care professionals, plus support #resources. Explore: https://t.co/yiJhjuuhmK

[The PSP Association @PSPAssociation]

Don’t worry if you missed the launch of our brand-new #Research for Impact: Research Strategy 2026-2030 a few months back. You can watch this video: https://t.co/Od1i9ZvvOf. Which shares more about our key objectives and ambitions and what’s driving us forward as a charity.

[The PSP Association @PSPAssociation]

58% of people with PSP & CBD were first misdiagnosed (PSPA Survey 2026). Join our free #masterclass for health & social care professionals with Dr Boyd Ghosh to learn how to spot early signs, improve diagnosis, and more. 🗓️ Mon 20 July, 6:30pm (Zoom) Book: https://t.co/lk6JkUNvz6

[The PSP Association @PSPAssociation]

Dr Ed Jabbari’s PSPA-funded #research has led to a £2.3m MRC #Fellowship to develop a new #diagnostic test for PSP & CBD using seed amplification assay. We’re proud to fund research that makes a difference. More: https://t.co/P6zQYjLmMn @AMRC #UKResearch

[The PSP Association @PSPAssociation]

Watch our Director of #Policy and Influencing, Mark Jackson, shares his thanks to everyone who participated in PSP & CBD Awareness Week and provide a little reminder to sign our Open #Letter to the Secretary of State, if you haven’t already. Sign it here: https://t.co/oMnKdygkOR

[The PSP Association @PSPAssociation]

Our Helpline Care Navigator, Dionne and the rest of the team are excited to be in Aberdare, South Wales to welcome health and social care professionals to our Regional Awareness event this afternoon!
#Healthcare #AberdareEvents #RegionalAwareness #SouthWalesHealth #MedicalEvents

[The PSP Association @PSPAssociation]

#Research from the PSPA-funded PROSPECT-M-UK study shows C9orf72 gene changes don’t increase PSP or CBD risk. This helps us focus on finding reliable biomarkers for future clinical trials. Read more in our 2025 #Impact Report: https://t.co/bq9Q1juwQd @AMRC #UKResearch

[The PSP Association @PSPAssociation]

Missed our masterclass on Cognition and Mental Health? 🎥

Dr Susan O’Connell shared key insights on:
🧠 Cognitive & mental health in PSP & CBD
🛠️ Assessment tips
🤝 Support for patients & families

Watch and share: https://t.co/saNAmYcY16
#CognitiveHealth #Masterclass

[The PSP Association @PSPAssociation]

Delayed diagnosis is a big challenge for people with PSP & CBD. Join our free Masterclass for healthcare professionals to learn more about diagnosis, with Dr Boyd Ghosh and former carer Denise Hunt. 🗓️ Mon 20 July, 6:30pm (Zoom) Book: https://t.co/WL3oEwgwwa #PSP #CBD #Webinar

[RARE Revolution Magazine® @RareRevolutionM]

A national survey released by UK charity the PSP Association (PSPA) has exposed a staggering lack of progress in diagnosing two terminal, progressive neurological conditions: progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).

https://t.co/hrHJnyxeYo
@PSPAssociation
#PSP #CBD #ProgressiveSupranuclearPalsy #CorticobasalDegeneration

[The PSP Association @PSPAssociation]

📢 Health & social care professionals in South Wales: Join us this Friday for an awareness event on PSP & CBD! Learn to recognise symptoms, understand progression, and explore management strategies. Free tickets 👉 https://t.co/Ry17FlFO9H #SouthWales #HealthcareEvents #FreeEvents

[The PSP Association @PSPAssociation]

Thank you to everyone who's engaged with PSP & CBD #Awareness Week 2026. The Survey #Report not only highlights key challenges in PSP & CBD care, but also sets out #recommendations for improving diagnosis, support and service provision. Read more on p44:https://t.co/LGYkV62X6n ).

[The PSP Association @PSPAssociation]

63% of #carers of people with PSP or CBD provide 50+ hours of care each week (PSPA #Survey). John his story of caring for his wife Gilly: https://t.co/qJajTesnbY. Signpost carers to our #Wellbeing Hub, which offers support to help protect their wellbeing: https://t.co/2JjCSvtHTr

[The PSP Association @PSPAssociation]

The PSPA #Survey found that 84% of people diagnosed with PSP or CBD 3–5 years ago report a severe impact on their lives. How can #health & social care services ensure support keeps pace with disease progression? Share our #SupportGrants with your patients: https://t.co/nSXRnRXIWS

[The PSP Association @PSPAssociation]

60% of people with PSP & CBD regularly experience depression, #anxiety, frustration, or stress related to their condition (PSPA Survey 2025). What can #healthcare, research and #policy do to reduce the financial burden on patients? Learn more: https://t.co/aeNxiuIdor #NHS

[The PSP Association @PSPAssociation]

Only 38% with PSP or CBD have a named #healthcare professional coordinating their care – another 36% would like one but don’t have one (PSPA #Survey 2025). What more can health & #research communities do to improve care coordination? Sign our open letter: https://t.co/lfIAX33L1K