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/
Our Introduction to PSP & CBD guide is now available to download in multiple languages to give you a better understanding of the conditions. Visit our publications page and download our guide in your preferred language - ow.ly/RRbS50Xoj0z
#PSP #CBD #MultilingualSupport #CommunitySupport
#PSP #CBD #MultilingualSupport #CommunitySupport
November 14, 2025 at 1:29 PM
Our Introduction to PSP & CBD guide is now available to download in multiple languages to give you a better understanding of the conditions. Visit our publications page and download our guide in your preferred language - ow.ly/RRbS50Xoj0z
#PSP #CBD #MultilingualSupport #CommunitySupport
#PSP #CBD #MultilingualSupport #CommunitySupport
Support people living with PSP & CBD, by dedicating a bauble to a loved one and donating to PSPA. Your donation will help ensure that nobody living with PSP or CBD, or their families feel alone, especially during the festive season. Read more here ow.ly/3W2750XohQu #ChristmasAppeal #CharityAppeal
November 12, 2025 at 12:13 PM
Support people living with PSP & CBD, by dedicating a bauble to a loved one and donating to PSPA. Your donation will help ensure that nobody living with PSP or CBD, or their families feel alone, especially during the festive season. Read more here ow.ly/3W2750XohQu #ChristmasAppeal #CharityAppeal
Today, we pause to remember.
We honour the courage, sacrifice, and selflessness of those who served — and those who still serve — in the pursuit of peace and freedom. May we never forget their legacy.
#RemembranceDay #LestWeForget #WeRemember
We honour the courage, sacrifice, and selflessness of those who served — and those who still serve — in the pursuit of peace and freedom. May we never forget their legacy.
#RemembranceDay #LestWeForget #WeRemember
November 11, 2025 at 11:53 AM
Today, we pause to remember.
We honour the courage, sacrifice, and selflessness of those who served — and those who still serve — in the pursuit of peace and freedom. May we never forget their legacy.
#RemembranceDay #LestWeForget #WeRemember
We honour the courage, sacrifice, and selflessness of those who served — and those who still serve — in the pursuit of peace and freedom. May we never forget their legacy.
#RemembranceDay #LestWeForget #WeRemember
This Carers Rights Day we want all unpaid carers to know and use their rights
These can help you:
▪️ Access support
▪️ Juggle care and work
▪️ Look after your health and wellbeing
▪️ When the person you care for is coming out of hospital
https://go.carersuk.org/CRD
These can help you:
▪️ Access support
▪️ Juggle care and work
▪️ Look after your health and wellbeing
▪️ When the person you care for is coming out of hospital
https://go.carersuk.org/CRD
October 29, 2025 at 8:46 AM
Laura from Neuro Heroes, spoke to us about the benefits of movements for people living with PSP & CBD, and what to expect from the online exercise classes that Laura and her team run. You can listen to this episode and more: ow.ly/Q0j850XeYmg #Podcast #ListenNow #Spotify #Movement #Support
October 28, 2025 at 10:59 AM
Laura from Neuro Heroes, spoke to us about the benefits of movements for people living with PSP & CBD, and what to expect from the online exercise classes that Laura and her team run. You can listen to this episode and more: ow.ly/Q0j850XeYmg #Podcast #ListenNow #Spotify #Movement #Support
Ferrer have announced they have completed recruitment of 220 patients for the PROSPER Study – a Phase 2 clinical trial in Progressive Supranuclear Palsy (PSP) – ahead of schedule. Read more about it here: ow.ly/yvKB50XgcMG #ProgressiveSupranuclearPalsy #ClinicalTrials #MedicalTrials #Research
October 24, 2025 at 11:52 AM
Ferrer have announced they have completed recruitment of 220 patients for the PROSPER Study – a Phase 2 clinical trial in Progressive Supranuclear Palsy (PSP) – ahead of schedule. Read more about it here: ow.ly/yvKB50XgcMG #ProgressiveSupranuclearPalsy #ClinicalTrials #MedicalTrials #Research
We’re delighted to share our recently launched Introduction to PSP & CBD Guide in multiple languages. The guide is now available in Welsh, Urdu, Spanish and Bengali, making it more accessible. You can learn more and download the guides from our website: ow.ly/hp0t50XbA1m #guides #accessible
October 22, 2025 at 3:18 PM
We’re delighted to share our recently launched Introduction to PSP & CBD Guide in multiple languages. The guide is now available in Welsh, Urdu, Spanish and Bengali, making it more accessible. You can learn more and download the guides from our website: ow.ly/hp0t50XbA1m #guides #accessible
When caring for someone it's as important to take of yourself. One of the best ways to do this is to make sure you’re properly fuelled. Take a look at our handy worksheet that provides helpful tips for cooking whilst caring for a loved one. View and download it from our webpage: ow.ly/QMt750X8w7x
October 21, 2025 at 2:52 PM
When caring for someone it's as important to take of yourself. One of the best ways to do this is to make sure you’re properly fuelled. Take a look at our handy worksheet that provides helpful tips for cooking whilst caring for a loved one. View and download it from our webpage: ow.ly/QMt750X8w7x
A big thank you to #TeamPSPA who recently ran the Royal Parks Half. Our incredible runners have raised over £2,500 with Gift Aid! To take part next year, sign up for the ballot reminder here www.royalparkshalf.com. A limited number of charity places will also be available #RoyalParksHalf
October 17, 2025 at 3:43 PM
A big thank you to #TeamPSPA who recently ran the Royal Parks Half. Our incredible runners have raised over £2,500 with Gift Aid! To take part next year, sign up for the ballot reminder here www.royalparkshalf.com. A limited number of charity places will also be available #RoyalParksHalf
We are extremely grateful to The Medicash Foundation who have awarded £2,000 towards our Helpline - helping people living with PSP and CBD to live their best lives possible with emotional support, helpful information and more! #Donation #Corporate #Helpline #Support
October 16, 2025 at 2:18 PM
We are extremely grateful to The Medicash Foundation who have awarded £2,000 towards our Helpline - helping people living with PSP and CBD to live their best lives possible with emotional support, helpful information and more! #Donation #Corporate #Helpline #Support
PSPA Trustee Jon Garrard will be making a call for life-changing research by sharing his personal story of his dad, Chris, who was diagnosed with PSP and took part in research himself. Find out how to support the appeal on Sunday 19 October at 7.54am and 9.25pm. #Radio4Appeal #RadioAppeal
October 15, 2025 at 10:52 AM
PSPA Trustee Jon Garrard will be making a call for life-changing research by sharing his personal story of his dad, Chris, who was diagnosed with PSP and took part in research himself. Find out how to support the appeal on Sunday 19 October at 7.54am and 9.25pm. #Radio4Appeal #RadioAppeal
Last year we encouraged people living with PSP & CBD to take part in the Neuro Alliance My Neuro Survey and we have now shared the results in our latest edition of PSPA Matters. You can read the full article on pages 30-31 here issuu.com/pspacharity/... #research #results #survey
October 14, 2025 at 10:34 AM
Last year we encouraged people living with PSP & CBD to take part in the Neuro Alliance My Neuro Survey and we have now shared the results in our latest edition of PSPA Matters. You can read the full article on pages 30-31 here issuu.com/pspacharity/... #research #results #survey
On #GiftAidAwarenessDay, we want to say a BIG THANK YOU to all our donors and fundraisers who #TickTheBox. You help us to help so many more! Every year, charities miss out on £560m in unclaimed Gift Aid tax relief. Help us claim more and do more. #GiftAid
October 9, 2025 at 10:09 AM
On #GiftAidAwarenessDay, we want to say a BIG THANK YOU to all our donors and fundraisers who #TickTheBox. You help us to help so many more! Every year, charities miss out on £560m in unclaimed Gift Aid tax relief. Help us claim more and do more. #GiftAid
We have so many helpful and enlightening articles in our latest edition of PSPA Matters. From a sneak peek at our BBC Radio 4 Appeal, to supporting the new generation of research, to personal experiences. There’s so much to read, so grab a cuppa, take a break and check it out: ow.ly/MZIt50X3Ikv
October 8, 2025 at 3:41 PM
We have so many helpful and enlightening articles in our latest edition of PSPA Matters. From a sneak peek at our BBC Radio 4 Appeal, to supporting the new generation of research, to personal experiences. There’s so much to read, so grab a cuppa, take a break and check it out: ow.ly/MZIt50X3Ikv
Listen to the @moversand6 podcast about Parkinsonism, that features our CEO Rebecca Packwood, and supporter Lisa Rodrigues who has CBD. The pair discussed the rare, neurological conditions PSP & CBD with the team and how PSPA can support. Listen here ow.ly/uCZl50X3uM5 #podcasts #listennow #spotify
October 7, 2025 at 8:48 AM
Listen to the @moversand6 podcast about Parkinsonism, that features our CEO Rebecca Packwood, and supporter Lisa Rodrigues who has CBD. The pair discussed the rare, neurological conditions PSP & CBD with the team and how PSPA can support. Listen here ow.ly/uCZl50X3uM5 #podcasts #listennow #spotify
Our Helpline Care Navigators, Cathy and Kaysha, are excited to be at the PDNSA (Parkinson’s Disease Nurse Specialist Association) Annual Conference at the @uni-of-warwick.bsky.social to connect with more healthcare professionals and share more about what PSPA does. Stop by and say hi 👋 #conference
October 2, 2025 at 8:45 AM
Our Helpline Care Navigators, Cathy and Kaysha, are excited to be at the PDNSA (Parkinson’s Disease Nurse Specialist Association) Annual Conference at the @uni-of-warwick.bsky.social to connect with more healthcare professionals and share more about what PSPA does. Stop by and say hi 👋 #conference
Watch our 'It Could Be CBD' animation which is voiced by Professor Huw Morris and include the most common symptoms of Corticobasal Degeneration (CBD) and how to support patients who are diagnosed with it. Watch the full video on our website or YouTube: ow.ly/nN2N50X0h7h
#corticobasaldegeneration
#corticobasaldegeneration
October 1, 2025 at 3:29 PM
Watch our 'It Could Be CBD' animation which is voiced by Professor Huw Morris and include the most common symptoms of Corticobasal Degeneration (CBD) and how to support patients who are diagnosed with it. Watch the full video on our website or YouTube: ow.ly/nN2N50X0h7h
#corticobasaldegeneration
#corticobasaldegeneration
Reposted by The PSP Association
Who’s Moving: @solacewomensaid.bsky.social, @pspassociation.bsky.social, @ciofundraising.bsky.social, @charitydebra.bsky.social and more
Who’s Moving: Mermaids, Solace, Arts Emergency and more
In this fortnightly column, Civil Society looks at people moving roles in the UK charity sector…
www.civilsociety.co.uk
September 29, 2025 at 9:47 AM
Who’s Moving: @solacewomensaid.bsky.social, @pspassociation.bsky.social, @ciofundraising.bsky.social, @charitydebra.bsky.social and more
New Frontier Economics report, commissioned by @amrc-uk.bsky.social & @wellcometrust.bsky.social, showcases the many benefits of non-commercial clinical research. It reveals the ‘triple dividend’ this research brings to the UK: unlocking growth, supporting the NHS and improving lives bit.ly/3KrW7nf
September 26, 2025 at 12:01 PM
New Frontier Economics report, commissioned by @amrc-uk.bsky.social & @wellcometrust.bsky.social, showcases the many benefits of non-commercial clinical research. It reveals the ‘triple dividend’ this research brings to the UK: unlocking growth, supporting the NHS and improving lives bit.ly/3KrW7nf
If you’re supporting carers who are looking after people living with PSP and CBD, please share our Carers Wellbeing Hub with them. This is an online hub of resources such as downloadable worksheets, podcasts and more. You can find the Wellbeing Hub here ow.ly/m4tX50WWHxc #carers #wellbeing
September 25, 2025 at 2:39 PM
If you’re supporting carers who are looking after people living with PSP and CBD, please share our Carers Wellbeing Hub with them. This is an online hub of resources such as downloadable worksheets, podcasts and more. You can find the Wellbeing Hub here ow.ly/m4tX50WWHxc #carers #wellbeing
We are excited to be in London at the BBC headquarters to record our Radio 4 Appeal. Our Trustee Jon Garrard is sharing his personal experience as part of the appeal, and why research into PSP & CBD means so much to him. The appeal is airing on 19 October, here's a sneak peak below #BBCRadioAppeal
September 24, 2025 at 2:48 PM
We are excited to be in London at the BBC headquarters to record our Radio 4 Appeal. Our Trustee Jon Garrard is sharing his personal experience as part of the appeal, and why research into PSP & CBD means so much to him. The appeal is airing on 19 October, here's a sneak peak below #BBCRadioAppeal
Reposted by The PSP Association
Congratulations to @pspassociation.bsky.social
and Dr James Cusack on this appointment! We look forward to working with you in this new role!
and Dr James Cusack on this appointment! We look forward to working with you in this new role!
We are delighted to announce that Dr James Cusack will become the new CEO of PSPA on 1 December 2025. He is joining us after a successful 5-year tenure as the CEO of Autistica and brings over a decade of experience in the charity sector. Read more: ow.ly/31Hu50X0Jjw #News #Updates #CharitySector
September 24, 2025 at 8:49 AM
Congratulations to @pspassociation.bsky.social
and Dr James Cusack on this appointment! We look forward to working with you in this new role!
and Dr James Cusack on this appointment! We look forward to working with you in this new role!
We are delighted to announce that Dr James Cusack will become the new CEO of PSPA on 1 December 2025. He is joining us after a successful 5-year tenure as the CEO of Autistica and brings over a decade of experience in the charity sector. Read more: ow.ly/31Hu50X0Jjw #News #Updates #CharitySector
September 23, 2025 at 10:59 AM
We are delighted to announce that Dr James Cusack will become the new CEO of PSPA on 1 December 2025. He is joining us after a successful 5-year tenure as the CEO of Autistica and brings over a decade of experience in the charity sector. Read more: ow.ly/31Hu50X0Jjw #News #Updates #CharitySector
The brand new #MoversandShakers podcast episode, featuring PSPA CEO Rebecca Packwood and supporter Lisa Rodrigues, is now available! Listen here: www.moversandshakerspodcast.com/podcast/epis... or wherever you get your podcasts!
#podcasts #listennow #audio #neurologicalconditions
#podcasts #listennow #audio #neurologicalconditions
September 22, 2025 at 3:15 PM
The brand new #MoversandShakers podcast episode, featuring PSPA CEO Rebecca Packwood and supporter Lisa Rodrigues, is now available! Listen here: www.moversandshakerspodcast.com/podcast/epis... or wherever you get your podcasts!
#podcasts #listennow #audio #neurologicalconditions
#podcasts #listennow #audio #neurologicalconditions
If you’re supporting families living with PSP & CBD, who have lost a loved one and want to connect with other people going through a similar experience, please share our Recently Bereaved Carers Support Group. Find out more here ow.ly/fNgU50WTTVa #carerssupport #onlinegroups #bereavement
September 18, 2025 at 9:22 AM
If you’re supporting families living with PSP & CBD, who have lost a loved one and want to connect with other people going through a similar experience, please share our Recently Bereaved Carers Support Group. Find out more here ow.ly/fNgU50WTTVa #carerssupport #onlinegroups #bereavement