The PSP Association
@pspassociation.bsky.social
Helping people living with Progressive Supranuclear Palsy & Corticobasal Degeneration to live the best life they can #TeamPSPA🧠
Sign-up to our Pathway to Progress Challenge here: https://www.pspassociation.org.uk/pathway-to-progress/
Sign-up to our Pathway to Progress Challenge here: https://www.pspassociation.org.uk/pathway-to-progress/
Reposted by The PSP Association
Rising costs and inconsistent funding have pushed hospices to breaking point. Without funding reform for hospices, vital end of life care could be cut, just as demand is rising.
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January 12, 2026 at 5:24 PM
Rising costs and inconsistent funding have pushed hospices to breaking point. Without funding reform for hospices, vital end of life care could be cut, just as demand is rising.
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Reposted by The PSP Association
It is reassuring to hear this in today's Public Accounts Committee on the financial sustainability of adult hospices in England.
Hospices care for 270,000 people every year in England. Yet on average, they receive just 40% of the cost of care from statutory funding.
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Hospices care for 270,000 people every year in England. Yet on average, they receive just 40% of the cost of care from statutory funding.
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January 12, 2026 at 5:24 PM
It is reassuring to hear this in today's Public Accounts Committee on the financial sustainability of adult hospices in England.
Hospices care for 270,000 people every year in England. Yet on average, they receive just 40% of the cost of care from statutory funding.
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Hospices care for 270,000 people every year in England. Yet on average, they receive just 40% of the cost of care from statutory funding.
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Reposted by The PSP Association
"None of us believe that end of life care and the services to provide it is where we would like it to be... We are committed to making sure that reform happens in practise." - Samantha Jones, Permanent Secretary at the Department for Health and Social Care.
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January 12, 2026 at 5:22 PM
"None of us believe that end of life care and the services to provide it is where we would like it to be... We are committed to making sure that reform happens in practise." - Samantha Jones, Permanent Secretary at the Department for Health and Social Care.
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🔬Announcement: We’re proud to fund Dr Michele Hu (University of Oxford) through the Aileen and David Heath Memorial Grant as she develops a smartphone + AI tool to help distinguish PSP from Parkinson’s earlier in the disease course.
#PSP #MovementDisorders #NeuroResearch #Research
#PSP #MovementDisorders #NeuroResearch #Research
January 12, 2026 at 4:05 PM
🔬Announcement: We’re proud to fund Dr Michele Hu (University of Oxford) through the Aileen and David Heath Memorial Grant as she develops a smartphone + AI tool to help distinguish PSP from Parkinson’s earlier in the disease course.
#PSP #MovementDisorders #NeuroResearch #Research
#PSP #MovementDisorders #NeuroResearch #Research
🔬Announcement: We’re proud to fund @ProfMicheleHu (University of Oxford) through the Aileen and David Heath Memorial Grant as she develops a smartphone + AI tool to help distinguish PSP from Parkinson’s earlier in the disease course.
#PSP #MovementDisorders #NeuroResearch
#PSP #MovementDisorders #NeuroResearch
January 12, 2026 at 3:05 PM
🔬Announcement: We’re proud to fund @ProfMicheleHu (University of Oxford) through the Aileen and David Heath Memorial Grant as she develops a smartphone + AI tool to help distinguish PSP from Parkinson’s earlier in the disease course.
#PSP #MovementDisorders #NeuroResearch
#PSP #MovementDisorders #NeuroResearch
Calling all #HCPs and specialists in PSP & CBD! 🧠
Help families understand their care options by joining our monthly online Support Groups. Share your insight and make a direct impact.
Interested? Contact Carol at: carol.amirghiasvand@pspassociation.org.uk 📩
Help families understand their care options by joining our monthly online Support Groups. Share your insight and make a direct impact.
Interested? Contact Carol at: carol.amirghiasvand@pspassociation.org.uk 📩
January 9, 2026 at 1:37 PM
Calling all #HCPs and specialists in PSP & CBD! 🧠
Help families understand their care options by joining our monthly online Support Groups. Share your insight and make a direct impact.
Interested? Contact Carol at: carol.amirghiasvand@pspassociation.org.uk 📩
Help families understand their care options by joining our monthly online Support Groups. Share your insight and make a direct impact.
Interested? Contact Carol at: carol.amirghiasvand@pspassociation.org.uk 📩
🔬 New research alert! This month, Dr. Filipa Henderson Sousa @BowlesLab begins a vital @PSPA-funded study into the breakdown of proteostasis in #PSP. By exploring how tau mutations disrupt protein balance in neurons vs. astrocytes, we're one step closer to targeted therapies🧬
January 7, 2026 at 1:18 PM
🔬 New research alert! This month, Dr. Filipa Henderson Sousa @BowlesLab begins a vital @PSPA-funded study into the breakdown of proteostasis in #PSP. By exploring how tau mutations disrupt protein balance in neurons vs. astrocytes, we're one step closer to targeted therapies🧬
Have you read the latest edition of PSPA Matters yet? It’s another packed edition filled with research updates and personal stories. You can check out and download the new edition here: ow.ly/fXMx50XMX4g #magazine #charitynews #news
January 2, 2026 at 11:45 AM
Have you read the latest edition of PSPA Matters yet? It’s another packed edition filled with research updates and personal stories. You can check out and download the new edition here: ow.ly/fXMx50XMX4g #magazine #charitynews #news
Thanks to kind donations to our Understood Appeal, we've awarded four Small #Research Grants.
One grant recipient is confirmed as Dr Dianne Lopez who has received 12 months funding to study cells in the brain called astrocytes, which are affected by PSP.
www.pspassociation.org.uk/introducing-...
One grant recipient is confirmed as Dr Dianne Lopez who has received 12 months funding to study cells in the brain called astrocytes, which are affected by PSP.
www.pspassociation.org.uk/introducing-...
December 30, 2025 at 9:35 AM
Thanks to kind donations to our Understood Appeal, we've awarded four Small #Research Grants.
One grant recipient is confirmed as Dr Dianne Lopez who has received 12 months funding to study cells in the brain called astrocytes, which are affected by PSP.
www.pspassociation.org.uk/introducing-...
One grant recipient is confirmed as Dr Dianne Lopez who has received 12 months funding to study cells in the brain called astrocytes, which are affected by PSP.
www.pspassociation.org.uk/introducing-...
Our CEO James Cusack shared a thank you on behalf of everyone at PSPA. We appreciate all the support, fundraising, volunteering and more that you have all done this year. You can watch his message here: www.pspassociation.org.uk/news/thank-y... #yearinreview #ceomessage
December 29, 2025 at 9:33 AM
Our CEO James Cusack shared a thank you on behalf of everyone at PSPA. We appreciate all the support, fundraising, volunteering and more that you have all done this year. You can watch his message here: www.pspassociation.org.uk/news/thank-y... #yearinreview #ceomessage
Reposted by The PSP Association
💡We're hiring!💡
Opportunity for a Research Assistant to join @soyonhonglab.bsky.social (UK DRI at UCL).
The Hong Lab investigates glia-immune mechanisms of synapse loss in age-related neurodegenerative diseases, including Alzheimer’s and Parkinson’s.
🗓️ Deadline: 7 Jan 2026
👉 lnkd.in/eQiEeipU
Opportunity for a Research Assistant to join @soyonhonglab.bsky.social (UK DRI at UCL).
The Hong Lab investigates glia-immune mechanisms of synapse loss in age-related neurodegenerative diseases, including Alzheimer’s and Parkinson’s.
🗓️ Deadline: 7 Jan 2026
👉 lnkd.in/eQiEeipU
December 23, 2025 at 9:30 AM
💡We're hiring!💡
Opportunity for a Research Assistant to join @soyonhonglab.bsky.social (UK DRI at UCL).
The Hong Lab investigates glia-immune mechanisms of synapse loss in age-related neurodegenerative diseases, including Alzheimer’s and Parkinson’s.
🗓️ Deadline: 7 Jan 2026
👉 lnkd.in/eQiEeipU
Opportunity for a Research Assistant to join @soyonhonglab.bsky.social (UK DRI at UCL).
The Hong Lab investigates glia-immune mechanisms of synapse loss in age-related neurodegenerative diseases, including Alzheimer’s and Parkinson’s.
🗓️ Deadline: 7 Jan 2026
👉 lnkd.in/eQiEeipU
Read the latest edition of PSPA Matters now! It features more on our Understood Research Appeal, how our support grants help the quality of life of those with the conditions, and a review of our Pathway to Progress event. Download it here ow.ly/fLUC50XJw9O #magazine #news
December 23, 2025 at 10:35 AM
Read the latest edition of PSPA Matters now! It features more on our Understood Research Appeal, how our support grants help the quality of life of those with the conditions, and a review of our Pathway to Progress event. Download it here ow.ly/fLUC50XJw9O #magazine #news
This week’s #MondayMotivation is our very own Hampshire Support Group who recently held their annual festive celebrations! With a raffle and loads of festive fun, together they raised over £350 for PSPA! A huge thank you to everyone involved 💜🧡 #Hampshire #ChristmasFun
December 22, 2025 at 9:29 AM
This week’s #MondayMotivation is our very own Hampshire Support Group who recently held their annual festive celebrations! With a raffle and loads of festive fun, together they raised over £350 for PSPA! A huge thank you to everyone involved 💜🧡 #Hampshire #ChristmasFun
The recordings from our final #Research Information Day of the year are now available to watch on our YouTube! We had some fantastic speakers sharing the latest on their research projects. Watch them here: Session 1: www.youtube.com/watch?v=lK6M...
Session 2: www.youtube.com/watch?v=pr8f... #Webinar
Session 2: www.youtube.com/watch?v=pr8f... #Webinar
December 18, 2025 at 10:48 AM
The recordings from our final #Research Information Day of the year are now available to watch on our YouTube! We had some fantastic speakers sharing the latest on their research projects. Watch them here: Session 1: www.youtube.com/watch?v=lK6M...
Session 2: www.youtube.com/watch?v=pr8f... #Webinar
Session 2: www.youtube.com/watch?v=pr8f... #Webinar
Our Christmas opening times are now live on our website. We understand the festive period can be a difficult time, but our Helpline is still here to support you throughout this time. ow.ly/L1nP50XG9qb #ChristmasOpeningTimes #Support #Helpline #Christmas
December 17, 2025 at 12:12 PM
Our Christmas opening times are now live on our website. We understand the festive period can be a difficult time, but our Helpline is still here to support you throughout this time. ow.ly/L1nP50XG9qb #ChristmasOpeningTimes #Support #Helpline #Christmas
Our poster has been designed to support Health and Social Care professionals in delivering the best care to their patients. Take a look at this and even more resources available on our website here: ow.ly/ex8250XG9NS #healthcare #supportservices #healthprofessionals #resources
December 16, 2025 at 3:31 PM
Our poster has been designed to support Health and Social Care professionals in delivering the best care to their patients. Take a look at this and even more resources available on our website here: ow.ly/ex8250XG9NS #healthcare #supportservices #healthprofessionals #resources
With the festive season fast approaching, we want to ensure everyone's aware of our adjusted opening hours and Helpline times. You can find the adjusted schedule here: ow.ly/83jt50XCP5x #ChristmasOpeningHours #FestiveSeason #Helpline #CharityUpdates #CommunitySupport
December 11, 2025 at 12:25 PM
With the festive season fast approaching, we want to ensure everyone's aware of our adjusted opening hours and Helpline times. You can find the adjusted schedule here: ow.ly/83jt50XCP5x #ChristmasOpeningHours #FestiveSeason #Helpline #CharityUpdates #CommunitySupport
“Now the Bereaved Carers Support Group is helping me along as I process my loss and move forward without Prema.” Our Bauble Appeal funds vital support for carers who have lost a loved one to PSP or CBD. Dedicated a bauble here: ow.ly/3xAl50XAz4N #ChristmasAppeal #ChristmasGiving #Fundraising
December 10, 2025 at 4:22 PM
“Now the Bereaved Carers Support Group is helping me along as I process my loss and move forward without Prema.” Our Bauble Appeal funds vital support for carers who have lost a loved one to PSP or CBD. Dedicated a bauble here: ow.ly/3xAl50XAz4N #ChristmasAppeal #ChristmasGiving #Fundraising
The Nature Partner Journals Dementia are looking for essays from clinicians and researchers who have experience with all forms of Dementia. The essays will be collated together to create "The Human Connection". Learn more here: ow.ly/9yrK50XAyH1 #researchers #journal #essays #personalexperiences
December 9, 2025 at 11:45 AM
The Nature Partner Journals Dementia are looking for essays from clinicians and researchers who have experience with all forms of Dementia. The essays will be collated together to create "The Human Connection". Learn more here: ow.ly/9yrK50XAyH1 #researchers #journal #essays #personalexperiences
We are delighted to be joined by our Trustees in the office today for our end-of-year meeting! The Trustees have lunch, catch-up with staff and meet with the senior management team to look back at 2025, discuss plans for 2026 and welcome our new CEO James. #Trustees #Charities #Meeting #Connection
December 8, 2025 at 3:01 PM
We are delighted to be joined by our Trustees in the office today for our end-of-year meeting! The Trustees have lunch, catch-up with staff and meet with the senior management team to look back at 2025, discuss plans for 2026 and welcome our new CEO James. #Trustees #Charities #Meeting #Connection
🎄Christmas is fast approaching and we want to ensure you know you can still received support from our Helpline, with this adjusted scheduled. Find out more here: ow.ly/LlVr50XCKnN We wish you a peaceful festive season and look forward to supporting you in the New Year #Christmas #Helpline
December 5, 2025 at 3:27 PM
🎄Christmas is fast approaching and we want to ensure you know you can still received support from our Helpline, with this adjusted scheduled. Find out more here: ow.ly/LlVr50XCKnN We wish you a peaceful festive season and look forward to supporting you in the New Year #Christmas #Helpline
Reposted by The PSP Association
What would we do without you? 🙌
It's #InternationalVolunteerDay, & we want to take the opportunity to say THANK YOU to every single volunteer who has helped us translate our resources into multiple languages.
If you'd be up for helping us translate our resources, email info@parkinsonseurope.org
It's #InternationalVolunteerDay, & we want to take the opportunity to say THANK YOU to every single volunteer who has helped us translate our resources into multiple languages.
If you'd be up for helping us translate our resources, email info@parkinsonseurope.org
December 5, 2025 at 10:02 AM
What would we do without you? 🙌
It's #InternationalVolunteerDay, & we want to take the opportunity to say THANK YOU to every single volunteer who has helped us translate our resources into multiple languages.
If you'd be up for helping us translate our resources, email info@parkinsonseurope.org
It's #InternationalVolunteerDay, & we want to take the opportunity to say THANK YOU to every single volunteer who has helped us translate our resources into multiple languages.
If you'd be up for helping us translate our resources, email info@parkinsonseurope.org
Last week we said goodbye to our CEO Rebecca Packwood, who was with the charity for 4 years. Some of Rebecca's achievements include: driving forward the research strategy, meeting with MPs and took on fundraising challenges. Thank you for everything Rebecca, we will miss you!💜🧡 #CEO #CharityUpdate
December 1, 2025 at 4:26 PM
Last week we said goodbye to our CEO Rebecca Packwood, who was with the charity for 4 years. Some of Rebecca's achievements include: driving forward the research strategy, meeting with MPs and took on fundraising challenges. Thank you for everything Rebecca, we will miss you!💜🧡 #CEO #CharityUpdate
The 2026 London Winter Walk is taking place over the weekend of January 24-25. It’s a great opportunity to walk off the festivities of the season whilst also raising money and awareness for PSPA. Find out more about the event and how to sign-up here: ow.ly/3V7X50XsXfa #LondonWinterWalk #Fundraising
November 28, 2025 at 10:47 AM
The 2026 London Winter Walk is taking place over the weekend of January 24-25. It’s a great opportunity to walk off the festivities of the season whilst also raising money and awareness for PSPA. Find out more about the event and how to sign-up here: ow.ly/3V7X50XsXfa #LondonWinterWalk #Fundraising
Did you miss our Falls and Mobility Management masterclass for patients living with PSP & CBD? Well don’t worry because you can watch the full session back on our YouTube channel. Watch the session in full anytime and share with your colleagues here: ow.ly/VSs250XtntZ #webinars #masterclass
November 27, 2025 at 10:22 AM
Did you miss our Falls and Mobility Management masterclass for patients living with PSP & CBD? Well don’t worry because you can watch the full session back on our YouTube channel. Watch the session in full anytime and share with your colleagues here: ow.ly/VSs250XtntZ #webinars #masterclass