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The PSP Association @pspassociation.bsky.social · 14h

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

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The PSP Association @pspassociation.bsky.social · 1d

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

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The PSP Association @pspassociation.bsky.social · 6d

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

The PSP Association @pspassociation.bsky.social · 7d

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

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Reposted by The PSP Association

Civil Society @civilsociety.bsky.social · 9d

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

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The PSP Association @pspassociation.bsky.social · 12d

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

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The PSP Association @pspassociation.bsky.social · 13d

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

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The PSP Association @pspassociation.bsky.social · 14d

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

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Reposted by The PSP Association

Association of Medical Research Charities @amrc-uk.bsky.social · 14d

Congratulations to @pspassociation.bsky.social
and Dr James Cusack on this appointment! We look forward to working with you in this new role!

The PSP Association @pspassociation.bsky.social · 15d

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

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The PSP Association @pspassociation.bsky.social · 15d

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

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The PSP Association @pspassociation.bsky.social · 16d

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

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The PSP Association @pspassociation.bsky.social · 20d

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

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The PSP Association @pspassociation.bsky.social · 22d

Our CEO Rebecca Packwood and supporter Lisa Rodrigues were delighted to join the award-winning Movers & Shakers Podcast, to record an episode all about Parkinsonian conditions, like PSP & CBD. The episode is releasing this Saturday www.moversandshakerspodcast.com/podcast
#podcast #MoversandShakers

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The PSP Association @pspassociation.bsky.social · 23d

Today's #MondayMotivation is Mary Crackles and family, who took on PSPA’s Pathway to Progress with a walk, bike ride and BBQ. The team raised over £6,000, a big thank you to Mary and family! Take part in the Pathway to Progress, find out more here ow.ly/OF8Y50WTH0n #fundraising #pathwaytoprogress

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The PSP Association @pspassociation.bsky.social · 28d

PSPA's Falls and Mobility in PSP & CBD Masterclass on 24 September will help you to:

- Improve Understanding of Mobility Challenges
- Create Individualised Mobility Interventions
- Understand Disease Progression and its Impact on Mobility

Register at tinyurl.com/yx7ctrsh #masterclass #webinar

The PSP Association @pspassociation.bsky.social · 29d

We're excited by collaboration of 4 US charities who joined forces to award $2.5 million in research grants. Five studies, over the course of 2 years, will support development of treatments for PSP, CBD and FTDs. We look forward to updates! tinyurl.com/bdfws5jd @CurePSP

#news #research

The PSP Association @pspassociation.bsky.social · Sep 8

Huge congratulations and thank you to our amazing team of runners who took on the #GreatNorthRun! So far the team has raised over £16,500 for PSPA. Well done everyone! The ballot is open for 2026 ow.ly/7vAp50WTc6e #TeamPSPA #HalfMarathon #MarathonRunners #CharityRun

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The PSP Association @pspassociation.bsky.social · Sep 4

Our Continuing Healthcare campaign has been shared in the latest edition of Rare Revolution Magazine. Our Communications Manager, Helen, shared all about our #FixCHC campaign that we launched in June during Awareness Week. You can read the article in full here: ow.ly/aHL750WQcsQ #magazine #news

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The PSP Association @pspassociation.bsky.social · Sep 2

Amylyx are discontinuing their Orion trial of AMX0035 for Progressive Supranuclear Palsy (PSP). After AMX0035 did not show differences compared to the placebo on primary and secondary outcomes at week 24, it was decided the trial should be discontinued. ow.ly/j9AB50WNE4I

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The PSP Association @pspassociation.bsky.social · Aug 28

You can now catch up and watch the 5 presentations from our most recent Research Information Session which was held in July. All of the presentations can be found on our YouTube channel or via this link: ow.ly/pUqb50WHzyB #researchsessions #videos #Youtube

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The PSP Association @pspassociation.bsky.social · Aug 26

Our Gloucestershire Support Group starts on Saturday 6 September from 10:30am-12pm. The group is still looking for a Coordinator, so if you live in the area and want to help deliver regular meetings for people living with PSP & CBD, please email [email protected]

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The PSP Association @pspassociation.bsky.social · Aug 22

Did you miss our second Research Information Day in July? All sessions from the day are now available to watch in full either on our YouTube channel or via our website: ow.ly/LSbp50WHAfA. What was your favourite session? Let us know in the comments below #Youtube #Research

Research Information Day Sessions - PSPA

ow.ly

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The PSP Association @pspassociation.bsky.social · Aug 21

If you’re supporting people living with PSP & CBD in or around Portsmouth, please share our new Support Group that starts on Tuesday 26 August at 11am. To attend, please ask them to contact [email protected] #supportgroups #portsmouth #mentalhealth #BlueSkyConnect

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The PSP Association @pspassociation.bsky.social · Aug 20

Applications are now open for the ABN 2026 ABN Clinical Research Training Fellowships. The PSPA has ringfenced £350,000 for a PSP or CBD specific application. All applications should be made via the ABN website: ow.ly/HoUM50WzWrZ #ClinicalResearch #ResearchFunding #Training #BlueskyConnect #Funding

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The PSP Association @pspassociation.bsky.social · Aug 19

We'll be broadcasting our Understood Research Appeal on BBC Radio 4 on Sunday 19 October. Our Trustee Jon Garrard will be sharing his Dad's experience with PSP and what research means for his family. You can donate to our Appeal here ow.ly/1a3X50WEqIN #BBCRadio4 #CharityAppeal #Radio