iiinova — where your digital self keeps evolving

The PSP Association @pspassociation.bsky.social · 29/09/2026

Spaces still available for #Neuro2026! Join us and CurePSP to hear experts share the latest in PSP & CBD research. Book your tickets for 5-6 Nov at Hilton Bankside, London: ow.ly/Htw550ZQ501 #PSP #CBD #ResearchEvent #Conference #MedicalConference #MedicalEvent #Neurology #Researchers

021

The PSP Association @pspassociation.bsky.social · 24/09/2026

We’re in Basildon today for our Regional Awareness event—bringing health and social care professionals together to learn from experts like Professor Huw Morris and strengthen support for people with PSP & CBD. #BasildonEvents #HealthCareProfessionals #SocialCare #Seminar #HealthEvent

010

The PSP Association @pspassociation.bsky.social · 23/09/2026

Are you a health or social care professional? Our guides to PSP & CBD cover: 🧠 Standards of care 🧠 Symptoms 🧠 Key differences from conditions like Parkinson’s Download #resources to support your practice: ow.ly/emow50ZOkv5 #HealthCare #SocialCare #MedicalGuides #PSP #CBD #Neurology

000

The PSP Association @pspassociation.bsky.social · 21/09/2026

⏰ Last chance! Apply for our #Helpline Care Navigator role by Sunday 27 September. Make a difference for people living with PSP & CBD. Join #TeamPSPA to support people and connect with #health & social care professionals. Full-time, permanent. Apply: ow.ly/hUc450ZObG2 #CharityJobs #ApplyNow

021

The PSP Association @pspassociation.bsky.social · 17/09/2026

Applications for the ABN #Fellowship close on Sunday 20 September 2026. Don’t miss your chance to apply for the 2027 Clinical Research #Training Fellowship Scheme. You can learn more about how to apply and find helpful resources here: ow.ly/USz950ZNQkz #ClinicalResearch

011

The PSP Association @pspassociation.bsky.social · 16/09/2026

We’re #hiring a #Helpline Care Navigator! Join PSPA and help support people affected by PSP & CBD across the South, Southwest & West Midlands. Full-time, permanent role with some evenings/weekends. Apply by Sunday 27 September: ow.ly/YuzS50ZOaUL #CharityJobs #Recruitment #SupportServices

131

The PSP Association @pspassociation.bsky.social · 11/09/2026

📢 Free online #Masterclass: Communication & Swallowing in PSP & CBD 🗓️ Wed 7 Oct, 6:30–8pm (Zoom) With Gillian McKinley, Speech & Language Therapist. Learn about swallowing, communication, and practical strategies for safe eating. Book free: ow.ly/sfyL50ZLbyB #Webinar #SpeechTherapy #Communication

001

The PSP Association @pspassociation.bsky.social · 27/08/2026

Professionals: Join Dr Annalisa Casarin’s focus groups on access to services for people with APS, including CBD & MSA. Share your perspective and help improve care. Interested? Email: ImproveAPS@herts.ac.uk #ParkinsonianSyndromes #NeurologyResearch #FocusGroups #Research

011

The PSP Association @pspassociation.bsky.social · 26/08/2026

🚀 We’re hiring a Research Coordinator (Maternity Cover) to support PSP & CBD research! Help drive funding, build partnerships, and empower patient voices. Make a real impact—apply now: www.pspassociation.org.uk/about-us/wor... #CharityJobs #ResearchJobs #Recruitment

021

The PSP Association @pspassociation.bsky.social · 25/08/2026

#Health & social care professionals: Join Kaysha, our Helpline Care Navigator, at our #Basildon event on Thurs 24 Sept! Learn about PSP & CBD, connect with peers, and hear from experts. Watch the video & book free tickets: ow.ly/8ZBv50ZF7Ig #FreeEvents #Healthcare #MedicalEducation #Essex

020

Reposted by The PSP Association

NIHR PRU in Dementia and Neurodegeneration Exeter @denpruexeter.bsky.social · 21/08/2026

Do you live with #dementia or a neurological condition? Do you care for someone with such? Want to share your stories on digital health services like eConsults, the NHS app or virtual appointments? Our FRIEND group are running roundtables in September! Sign up now! 👀👇

121

The PSP Association @pspassociation.bsky.social · 21/08/2026

New research: Diagnosing Corticobasal Syndrome (CBS) is complex—#CBD, PSP or #Alzheimer’s can be the cause. Biomarker tests like CSF or PET scans help pinpoint the #diagnosis and support targeted #treatments. Read more: ow.ly/4AYT50ZyRsj #Research #ResearchPaper #CorticobasalDegeneration

000

The PSP Association @pspassociation.bsky.social · 14/08/2026

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

020

The PSP Association @pspassociation.bsky.social · 12/08/2026

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

000

The PSP Association @pspassociation.bsky.social · 11/08/2026

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

000

The PSP Association @pspassociation.bsky.social · 06/08/2026

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

010

The PSP Association @pspassociation.bsky.social · 05/08/2026

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

000

The PSP Association @pspassociation.bsky.social · 04/08/2026

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

youtu.be

Could it be Corticobasal Degeneration?

YouTube video by PSPA

010

The PSP Association @pspassociation.bsky.social · 03/08/2026

🚀 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

000

Reposted by The PSP Association

Carers UK @carers-uk.bsky.social · 30/07/2026

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: bit.pulse.ly/jtdo2fnegd #BT #ConnectedTogether

051

The PSP Association @pspassociation.bsky.social · 30/07/2026

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

031

The PSP Association @pspassociation.bsky.social · 29/07/2026

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

010

The PSP Association @pspassociation.bsky.social · 23/07/2026

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

000

The PSP Association @pspassociation.bsky.social · 21/07/2026

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

000

The PSP Association @pspassociation.bsky.social · 03/07/2026

#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

041

The PSP Association @pspassociation.bsky.social · 26/06/2026

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

020

The PSP Association @pspassociation.bsky.social · 25/06/2026

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

020

The PSP Association @pspassociation.bsky.social · 23/06/2026

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

010

Reposted by The PSP Association

Neurological Alliance of Scotland @neuroalscotland.bsky.social · 22/06/2026

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 and CBD Awareness week infographic. 58% of people were initially misdiagnosed with another condition. 38% of people with PSP or CBD have a named healthcare professional coordinating their care- another 36% would like one but don't have one. 60% of people with PSP or CBD regularly experience feelings of depression, anxiety, frustration or stress related to their condition. 77% of PSP and CBD carers say caring has negatively affected their wellbeing.

121

The PSP Association @pspassociation.bsky.social · 22/06/2026

📢 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

010

The PSP Association @pspassociation.bsky.social · 15/06/2026

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

010

Reposted by The PSP Association

Carers Week @carers-week.bsky.social · 11/06/2026

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: bit.pulse.ly/zbk3fajufc

042

The PSP Association @pspassociation.bsky.social · 03/06/2026

#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

010

The PSP Association @pspassociation.bsky.social · 02/06/2026

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

010

The PSP Association @pspassociation.bsky.social · 28/05/2026

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.

021

The PSP Association @pspassociation.bsky.social · 20/05/2026

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

010

The PSP Association @pspassociation.bsky.social · 19/05/2026

#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

010

Reposted by The PSP Association

Neurological Alliance of Scotland @neuroalscotland.bsky.social · 11/05/2026

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.

infographic advertising policy group meeting. image of a coffee cup on a table. Text says: Neuro Policy Networking Meeting #25. Neurological Issues of the Day. Registration open. members only. Tuesday 12 May 2026, 11-12. Chaired by mark jackson director of policy and influencing at PSPA.

011

The PSP Association @pspassociation.bsky.social · 21/04/2026

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

010

The PSP Association @pspassociation.bsky.social · 17/04/2026

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

010

The PSP Association @pspassociation.bsky.social · 02/04/2026

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

010

The PSP Association @pspassociation.bsky.social · 01/04/2026

The new edition of PSPA Matters is here! 🎉 Featuring: 🔬 Our Research Strategy 🗣️ Partnership with ElevenLabs for Voice Banking 🧠 PSP & CBD research updates 👉Download now: ow.ly/4FJ950YxYWj #Magazine #Research #Updates #News #Neurology

030

Reposted by The PSP Association

Carers Scotland @carersscotland.bsky.social · 31/03/2026

Take part in the study of a support app designed to help you manage acute stress, wellbeing, and emotional impact of challenging or traumatic incidents. Participate here: hass.eu.qualtrics.com/jfe/form/SV_... Or contact Bill Hodgson: Hass-sentinelprojects@strath.ac.uk Tel: 0141 548 5979

011

The PSP Association @pspassociation.bsky.social · 26/03/2026

Thank you to Ayoub Khan MP for bringing a Westminster Hall debate on Continuing #Healthcare. CHC funding should be a lifeline for people with PSP & CBD, but our State of CHC report shows the system is broken - fewer than 1/4 applications are successful. Report: tinyurl.com/3abzdyhy #NHS #CHCFunding

010

The PSP Association @pspassociation.bsky.social · 25/03/2026

We’re in Lincolnshire today for our Regional Awareness event, supporting families living with PSP & CBD. Hear from our Helpline & Support Services Manager, Peggy, about what the day will include! #Events #FreeEvents #Lincolnshire #HealthcareProfressionals #Research

000

The PSP Association @pspassociation.bsky.social · 25/03/2026

Diagnosing PSP & CBD can be tough. Our posters highlight key red flags to help professionals during consultations. Find them and more resources here: ow.ly/Znjw50YxuMH #PSP #CBD #Diagnosis #Resources #Downloads #MedicalPosters

000

The PSP Association @pspassociation.bsky.social · 20/03/2026

Professor Johannes Attems, Professor of Neuropathology and member of the PSPA Research Committee chaired a session and presented at #ADPD2026 yesterday. His session was called ‘Linking Pathology and Biomarkers across Neurodegenerative #Disorders’ which looked at PSP & CBD. #MedicalConference

000

The PSP Association @pspassociation.bsky.social · 19/03/2026

Our Helpline Care Navigator's Cathy and Kaysha had a great day presenting about PSP & CBD and meeting healthcare professionals at the #Neurodegenerative Conditions Awareness event with @inspireneuroc in Farnborough today! #Healthcare #Awareness #neurology

010

The PSP Association @pspassociation.bsky.social · 18/03/2026

Watch our Research Coordinator, Megan share more about PSPA's poster from #ADPD2026 #research #researchposter #medicalconference

030