Know your rights as a Carer, this Carers Rights Day 👇 #Carers #CarersRightsDay #Resources #Awareness

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

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

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

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

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

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

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

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

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

Congratulations to @pspassociation.bsky.social 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

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

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

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

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

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

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

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

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

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

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

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]

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

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

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

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

A big thank you to everyone who has taken on our Pathway to Progress! So far you’ve raised an incredible £32,000 and walked 1,280 miles! We’re so close to our total of £40,000. So why not get moving for the Pathway to Progress! Register here ow.ly/exTs50WFWb6 #Fundraising #PathwaytoProgress

Share our Men’s Carers Support Group with your networks. The group is run by Volunteer David Pugh, who uses his experience of caring for his wife to encourage conversations. The next meeting is on 18 August at 7pm on Zoom. They can sign-up here ow.ly/asyG50WAzLk #MaleCarers #SupportGroups #Zoom

Please share our Carer’s Guide to PSP & CBD with families you support. The guide features advice from family carers and provides support, knowledge, and encouragement. The guide is available to download from our website here: ow.ly/Hq2u50WA5m1 #CarersGuide #FamilyCarers #Carers #Resources #Leaflets

Are you a healthcare professional looking for resources about PSP & CBD? Take a look at our website. We have plenty of materials such as guides, education videos like our “It Could Be CBD” animation & more. Have a look and share them with your networks ow.ly/fYHi50WBbkn #education #healthcare

Emergencies can often catch people unawares. That’s why it’s essential for families to have an emergency plan in place. Please share our article about creating an emergency plan with people you support. The article’s featured on page 28 in PSPA Matters: ow.ly/MciF50WBTfF #EmergencyPlanning #Support

Come along to the Wessex Atypical Parkinsonian Syndromes Study Day on Friday 19 September, 9am-5pm. It will cover many topics including diagnosis best practices. This is open to all healthcare professionals. Purchase tickets here ow.ly/avyv50WxelV #MedicalStudyDay #events #BlueskyEngage #Healthcare

Enhance Your Expertise in Managing Falls and Mobility Challenges in PSP & CBD. Join us for our latest FREE Masterclass that will equip you with knowledge and tools to support people living with PSP & CBD. Find out more and register here ow.ly/ngJE50WxbJB #webinar #zoom #onlinelearning #medical

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 #Neurology #PSP #CBD

This week’s #MondayMotivation is Louis Jones who ran the Boston Marathon in support of his fiancé’s family. Louis raised over £5,000 for PSPA, a truly incredible amount that will help people living with PSP & CBD. Thank you Louis! #Fundraising #BostonMarathon #CharityChallenge #Bluesky #Boston

Please help spread the word about our Regional Carers Groups. These groups are friendly and supportive environments where carers can share experiences. They take place monthly over Zoom. There's more information about regions and how to sign-up here ow.ly/yroc50WtR04 #RegionalGroups #SupportGroups

Our #Cognition & Behaviour leaflet explains cognitive changes and provides ways for coping. Please share this leaflet with any families you are supporting, which can be downloaded from our website ow.ly/spwY50WtbI8 #informationsheet #leaflet #resources #support #BlueskyEngage

We are looking for a Helpline and Support Services Manager who will lead a small, passionate team of Helpline Care Navigators. This role is an opportunity to drive real change, improve lives, and lead a service that’s a lifeline for many. Apply here ow.ly/6Y2550WsElA #jobs #vacancies

Our #MondayMotivation is John Maskill who completed his Pathway to Progress in memory of his wife Suzanne, raising over £1,600 for PSPA. Thank you to John for taking on the challenge. Sign up to take part in our Pathway to Progress to raise money for PSPA ow.ly/liG550Wsx60 #BlueskyEngage #Charity

In 2024 our #Helpline Care Navigators responded to 9,580 emails and calls, providing emotional support and information to people living with PSP & CBD, and their families. If you need #support get in touch with the Helpline team on 0300 0110 122 or [email protected] #BlueskyConnect

We are looking to grow our London Landmarks team for #2026! If you, or someone you know has been successful in obtaining a ballot place and would like to run on our behalf, please get in touch! Email [email protected] to find out more #LondonLandmarksHalf #Charity