The PSP Association (@PSPAssociation) header
The PSP Association (@PSPAssociation) profile picture

The PSP Association

@PSPAssociation

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

 United Kingdom
pspassociation.org.uk/news/wear-eds-lace-to-raise-awareness-of-psp-cbd/
Joined January 2011
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  • Following1.8K
  • Followers4.2K
We would like to congratulate Professor James Rowe, @CambridgeFTD on his 30 years in this field and for being an integral part of PSPA including being a Trustee and on our Research Committee!
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Our Director of Policy and Influencing, Mark Jackson, is exhibiting our PSPA poster at the @ISPORorg Europe Conference in Vienna. Do stop by and say hi! #ISPOREurope #HealthPolicy #PatientCare
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Image from The PSP Association (@PSPAssociation)
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The PSP Association retweeted
Dan Smith👁👁 (@AttentionLab) profile picture
Dan Smith👁👁@AttentionLabNov 6
Been very busy for the last couple of days doing some excellent hobnobbing at the @PSPAssociation #Neuro2026 poster sessions 😁
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The PSP Association retweeted
Bowles Lab (@bowles_lab) profile picture
Bowles Lab@bowles_labNov 7
Congratulations Paula Beltran-Lobo for winning the poster prize at #Neuro2026, and congratulations @CurePSP and @PSPAssociation for a fantastic meeting!
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In the final sessions of #Neuro26 we heard the latest from researchers from Nigeria, Taiwan, Brazil and the UK’s PROSPECT-ExPRESS cohort from Riona Fumi. It’s important to collect data from these global cohorts as PSP & CBD are global diseases.
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
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The afternoon sessions and panel was all about the first stages of getting trials off the ground and how they can be used in the future. #Neuro26 #ClinicalTrials #Research
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Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
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We finished out the morning sessions with Lightning Poster Presentations, where 4 presenters each had 5 minutes to present their research poster #Neuro26
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Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
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The PSP Association retweeted
Dan Smith👁👁 (@AttentionLab) profile picture
Dan Smith👁👁@AttentionLabNov 6
New paper from our @VivensaF project: Visual search as a cognitive marker to discriminate progressive supranuclear palsy from Parkinson’s disease academic.oup.com/braincomms/… @PSPAssociation @Alchev_ @durhamps
Visual search as a cognitive marker to discriminate progressive supranuclear palsy from Parkinson’s...

Visual search as a cognitive marker to discriminate progressive supranuclear palsy from Parkinson’s...

Delayed diagnosis is common in Progressive Supranuclear Palsy. Here, Smith et al., report that the Bells test (a test of visuospatial attention) discrimina

academic.oup.com
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After coffee, we had a session focused on the genetic factors that can influence PSP & CBD and the progress made through global collaborations like GP2. The panel also spoke about how lots of genetic factors can affect our brains and how it change over time. #Neuro26
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Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
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We had more fascinating talks from Jocelyn Jiao on the role of palliative care, Miriam Rafferty on rehabilitation care paths & Michelle Troche on managing changes in swallowing and communication. Followed by a great panel discussion led by Dr Boyd Ghosh #Neuro26
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Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
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We’re here on day 2 of #Neuro26. We started with an insightful talk about lived experiences from John and Andrew Manitara on caring for their wife and mum Gillian, and Mike and Lisa Rodrigues on living with CBD.
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Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
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The last session of day 1 of #Neuro26 highlights the increased understanding the roles of inflammation, microglia, and astrocytes play in the development and prognosis of PSP & CBD. We ended with an all female panel! #Neuro2026 #Research #ResearchConference
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Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
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It was exciting to hear insights from multiple pharmaceutical companies about current and past studies which can help inform future trial design. #Neuro2026 #ResearchConference
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It was good to see a whole session focused on CBD, with an understanding of clinical presentation. It finished with the hope that a trial will happen for CBD. #Neuro2026 #CBD #Research #ResearchConference
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Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
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We’re excited to be at #Neuro2026! We’ve had insightful sessions so far about the difficulties around clinical diagnosis, but how a multi-arm and multip-protein approach can provide hope for the future.
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
Image from The PSP Association (@PSPAssociation)
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The PSP Association retweeted
Matt Webley (@mrwebleyteach) profile picture
Matt Webley@mrwebleyteachNov 1
Was nice to keep Dad in mind whilst running in Tenerife over half-term, he absolutely loved the island, many a special memory had there. Under 6 months now until I run the @LondonMarathon for @PSPAssociation any support for my fundraiser gratefully received! #running #charity 2027tcslondonmarathon.enthus…
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Missed our #Masterclass for #health & #social care professionals? Gillian McKinley shared expert tips on communication & swallowing in PSP & CBD. Watch & share the recording: ow.ly/WOP750ZZmtb #Communication #Neurological
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#Health & social care professionals in #England: ImproveAPS wants your insights! Join an online focus group on services for people with CBD, PSP, or MSA. 75 mins, shopping vouchers. Based in Midlands/East Anglia? Email [email protected]. Closes 3 Nov—please share! #Research
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We welcome the one-off £100 payment for some council tax bands to help with energy bills. More people are seeking Support Grants for daily costs. The new taper to Carer’s Allowance is a step forward, but we urge the government to do more for carers. #Budget #CostofLiving #Carers
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Diagnosis of PSP & CBD can take 3–5 years. Our Eye Red Flag Poster helps opticians spot 3 key signs: 👁️ Eye movements 👁️‍🗨️ Eye lids 🎯 Fixation #Opticians: Download & share the poster to help improve early diagnosis: ow.ly/Ma5I50ZZnuo #EyeHealth #EarlyDiagnosis
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