We welcome progress for the MND community, but our PSP & CBD community faces similar challenges: fragmented care, delayed #diagnosis, financial strain & carers under pressure. We continue to campaign for better coordinated care. Read more: ow.ly/cb3B50ZzNkv #CoordinatedCare #HealthReform

PM Andy Burnham’s call for social care reform must include NHS Continuing #Healthcare (CHC) funding. Our 2025 report shows 1 in 4 with PSP & CBD waited over a month for a CHC decision, with only 5% approved in some regions. Fair access is essential. More: ow.ly/O9rS50ZvIYf #CHCFunding #NHS

Clinical researchers—apply now! The ABN 2027 Clinical #Research Training #Fellowship Scheme is open, including the PSPA Fellowship. Up to £350,000 over 3 years to advance PSP & CBD research. Make a difference—apply by 20 Sept 2026: ow.ly/h0tR50ZvOkA #ClinicalResearch #ResearchFunding

We’re thrilled to announce PSPA has achieved the Investing in Volunteers (IiV) award! 🎉Thank you to Lavonne and all our amazing volunteers for your dedication to people living with PSP & CBD. We couldn’t do it without you! 💜 @ncvo.bsky.social #IiVUK #TeamPSPA #Volunteers #InvestinginVolunteers

Only 38% of people with PSP or CBD have a #healthcare professional coordinating their care. This must change. We need a Modern Service Framework for #neurological conditions. Support the Neurological Alliance #petition and help make a difference by signing here: ow.ly/4Bcw50Zu5SQ #NHS #Government

CBD/CBS is often harder to diagnose than PSP. Professor Huw Morris explains key symptoms and how #healthcare professionals can help at every stage. 🎥 Watch: youtu.be/-posfXd3o_4 💻Learn more: www.pspassociation.org.uk/what-is-cbd/ #CBD #CorticobasalDegeneration #Diagnosis #Symptoms #Medical

Could it be Corticobasal Degeneration?

YouTube video by PSPA

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🚀 2027 ABN Clinical Research #Training Fellowship applications are open! PSPA is offering up to £350,000 funding for #research to improve understanding, diagnosis & care of PSP & CBD. Apply: www.theabn.org/page/Fellows... Deadline: 20 Sept 2026 #ResearchFunding #MedicalFellowship #Healthcare

We are supporting BT's #DontPutOffTheSwitch campaign. The digital landline switchover in January 2027 could affect services you rely on as a carer. When your provider contacts you about the switch, be sure to take action. Learn more: https://bit.pulse.ly/jtdo2fnegd #BT #ConnectedTogether

Our CEO, James Cusack, shared his thoughts about new PM @andyburnham.bsky.social speech on social care and how coordinated care is needed for people living with PSP, CBD and their carers and families. Watch here👇 #SocialCare #CoordinatedCare #HealthPolicy #PatientCare #Government

Health & social care professionals in #Essex: Join us Thurs 24 Sept for our #FREE Regional Awareness event! Learn to spot & manage PSP & CBD, with expert speakers and practical tips. Book now: ow.ly/HQ1Y50Zseom #PSP #CBD #Training #NHS #MedicalEvent

Our #Guide to #Cognition in PSP & CBD is designed for the Primary Healthcare Team. It covers cognitive and behavioural changes, dementia, and practical management tips. Download and share with your team: ow.ly/ioTt50ZpZ2A #PSP #CBD #HealthcareProfessionals #Neurology #Guides #BrainHealth

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: ow.ly/Rxcy50ZpYzG #ImpactReport #Research

#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: ow.ly/c50G50ZjAsY @amrc-uk.bsky.social #UKResearch

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: ow.ly/orkg50ZfyKM #NHS #MentalHealth #Wellbeing #Report

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: ow.ly/5aV550Zfy0r #CareCoordination

For 67% of people it takes up to two years, or longer, to receive a #diagnosis, according to the PSPA #Survey. Maggie and Chris waited 4 years, read their story below. Earlier recognition can help people sooner. Register for our free diagnosis masterclass: ow.ly/R4vT50Zfgzo #webinar #onlinelearning

This PSP and CBD Awareness Week @pspassociation.bsky.social have published a new report revealing a staggering lack of progress in diagnosing Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD)- both terminal, progressive neurological conditions. Read more 👉 bit.ly/4oIb9FK

📢 PSP & CBD Awareness Week 2026. Our latest PSPA Survey findings highlights the experiences of people affected by PSP and CBD, from diagnosis through to progression and the impact on carers. What can we do to improve the patient journey? Read the report: ow.ly/4fhN50Zf5XR #Survey #Report #Awareness

Discover the difference your support makes! Our #CEO, James Cusack, shares the most powerful insights from our latest Impact Report—highlighting the real stories, progress, and hope made possible by our community. Dive into the key findings: ow.ly/MnoM50ZbL0Y #ImpactReport #Volunteers #CharityUpdate

Today’s #Carers Week’s focus is education. 46% of young carers leave school with five GCSEs, compared to 60-65% of peers without caring responsibilities. Explore the Building Carer Friendly Communities blueprint for ways to inspire action in education. Learn more: https://bit.pulse.ly/zbk3fajufc

#Health & social care professionals: Join us in #Aberdare, South #Wales on Fri 3 July for our free PSPA Awareness Event! Learn to spot signs of PSP & CBD, understand progression, and explore support. Hear from our Helpline Care Navigator, Dionne. Book free: ow.ly/yC9x50Z73Go #FreeEvents #Healthcare

Only 1 in 5 people get #NHS Continuing Healthcare (CHC) funding, with postcode lotteries making access unfair. We’re supporting Dementia UK's call to #FIXCHC for fairer assessments and funding. Sign @dementiauk.bsky.social petition: ow.ly/S90x50Z6CJ9 #healthcare

We support @mariecurieuk.bsky.social’s call on the #government to ensure people living with #terminal conditions like PSP & CBD can access #financial support easier. Our recent #survey found 65% of people with PSP & CBD experience new costs they didn’t have before.

Marie Curie UK@mariecurieuk.bsky.social · 3mo ago

People living with life-limiting illnesses that will only get worse shouldn’t have to be put through repeated benefits reassessments. They add stress and paperwork at a time when people are already dealing with so much. It has to stop. 🛑 www.independent.co.uk/news/uk/home...

It's promising interest in #ClinicalTrials for Progressive Supranuclear Palsy has been increasing in recent years. PSPA Trustee, Dr Boyd Ghosh, shares how there are more PSP trials than ever, with more to come. #ClinicalTrialsDay

#Healthcare professionals: Join us in #Stirling on 18 June for our #free PSPA Regional #Awareness event! Learn to spot PSP & CBD, understand progression, and improve support. Book now: ow.ly/jmWP50YY2aO #PSP #CBD #Scotland

PSPA's CEO James Cusack, and Research Coordinator Megan Hodgson are excited to be at his year's #TauGlobalConference in #Washingston which started yesterday! @alzassociation.bsky.social @curepsp.bsky.social #RainwaterCharitableFoundation #Tau #TauResearch #Tau2026 #Conference

Our next policy group meeting is taking place tomorrow, 11:00-12:00, on Teams. The meeting will be a chance to discuss the results from Scotland's elections and learn a bit about the make up of the new Scottish Parliament. Thank you to Mark Jackson from @pspassociation.bsky.social for chairing.

Join us at Neuro2026: The PSP & CBD International #Research Symposium with #CurePSP on 5–6 Nov 2026 at Hilton London Bankside for the latest in PSP & CBD research. Open to all researchers and #medical professionals. More info & tickets: ow.ly/fWsP50YMthA #Neuro2026 #Research

Nature Partner Journals are seeking essays from clinicians, researchers & advocates on all forms of Dementia. Help shape “The Human Connection” journal. Find out more & submit your experience: ow.ly/CSNi50YIRfx #NeuroScience #BrainHealth #MedicalJournals

We have a range of resources to help you support your patients living with PSP or CBD. From publications, to support groups, support grants to our Helpline, find out more about how you can best support your patients: ow.ly/oObr50YxZgn #HealthProfessionals #PatientSupport