PSPA

Good luck Harry! Harry is running the Thames Path Ultra Challenge in memory of his Nan, Angela Rankin who passed away from PSP in 2022. He will be running 100km over two days to raise money for PSPA. You can sponsor Harry via this link: https://lnkd.in/e6dskjXV

Support our CEO Rebecca Packwood who is undertaking the Thames Path Ultra Challenge this weekend to raise money for PSP and CBD. You can donate to Rebecca's Just Giving page here: https://lnkd.in/e_cWjWXF. Follow along over the weekend for updates from Rebecca.

The latest PSPA Podcast episode with Dr Ed Jabbari is now available to listen to. Dr Jabbari is a Neurologist at the National Hospital for Neurology and Neuro Surgery and is also a Clinical Researcher at the UCL Queens Square Institute of Neurology in London. Dr Jabbari’s work focuses on PSP and other Parkinsonian disorders. In this podcast, Dr Jabbari shines a light on his latest research and the findings of a genetic variant that makes the PSP condition progress at a faster rate, and what the impact of this research will be in terms of our understanding and treatment of the condition. Listen to the full podcast for a deeper dive into his research here: https://lnkd.in/eYXatyFm #PSPAPodcast #DrEdJabbari #ClinicalResearch #MedicalResearch #PSPStudies #ClinicalTrials #ProgressiveSupranuclear#Palsy

We’d like to say a big thank you to everyone who took part in last week’s Great North Run! We had 21 runners between the main Sunday event, and Saturday’s Jr Great North Run and together they raised an incredible £10,064 to date! Have you been inspired by our runners? Are you looking for a challenge for 2025? Then get entering the September ballot before Friday 13 September 2024 at 12pm, for your chance to be on that iconic start line! All applicants will receive an email with the result of the ballot entry by Wednesday 18 September 2024. Those successful in the September Ballot will secure an entry into the 2025 Great North Run, which will be held on Sunday 7 September 2025. Anyone who is unsuccessful with their September Ballot application can try again in the January Ballot, and then apply for a charity place. Great North Run entries are open to runners aged 17+ on the day of the event. A booking fee (£2.50) is applied at checkout. Apply and find more information here: https://lnkd.in/eHAQMTJA #GreatNorthRun #CharityRunners #FitnessGoals #2025Challenge #UKRunners #RunForACause #TeamPSPA

If you’re a physio therapist that is supporting patients who are living with PSP & CBD, then why not refer them to our online exercise sessions, in conjunction with Neuro Heroes. Neuro Heroes are a team of Specialist Neuro Physiotherapists that run online exercise sessions to help people living with these conditions to manage common symptoms of the conditions. Throughout the class, the instructor will provide options to exercise in sitting or standing positions, to ensure everyone gets a good workout, at a suitable level. They will also provide feedback during the class to improve form and technique. Each participant is initially entitled to eight sessions but can access further classes as availability allows. To sign up, they just need to complete the Assessment Form here: https://lnkd.in/dP63qzdw They will also need to be a member of PSPA, they can register to join here: https://lnkd.in/eVreGQvu You can find out more information here: https://lnkd.in/e6efqD2J.

On Saturday 7 September the PSPA Norwich Support Group hosted an Autumn Fair at Poringland Village Hall. The fayre features a tom bola, raffle, book and craft stalls and PSPA information and Christmas cards. There was a steady footfall during the fayre helping the group raise more than £700 plus Christmas card sales in addition. Thanks to everyone who supported the event.

The PSPA Shop has the most beautiful Christmas card range to send to your loved ones. Get organised for Christmas and support PSPA at the same time! Choose from a varied festive collection, including a virtual Christmas card, so you don’t have to worry about postage. Cards come in packs of five of each design. All profits from your purchase will help us improve diagnosis for the 10,000 people living with PSP & CBD in the UK. Purchase your cards: https://lnkd.in/d3aXPVpZ Please note our PSPA collection is available to post in the UK only. #CharityChristmasCards #VirtualChristmasCard #PSPASupport #DigitalChristmasCard #CharityFundraising #CharityChristmas

Did you know that 1 in 6 people in the UK and ROI has a neurological condition? By filling out the #MyNeuroSurvey by neurological_alliance and sharing your experience of PSP or CBD you could make a real difference to people living with the conditions in the future. The experiences you shared in the 2021/2022 survey provided the evidence needed to call for on the government to #BackThe1in6 people living with neurological conditions and establish a Neuro Taskforce. Please help keep that momentum going – fill out My Neuro Survey today: https://lnkd.in/ecZfGQAu The survey takes around 20 minutes to complete. It’s completely anonymous and secure, you won’t even need to give an email address. #MyNeuroSurvey #NeurologicalAlliance #NeurologicalCondition #ImproveServices #PSP #CBD

The PSPA Bauble Appeal 2024 has launched! The Bauble Appeal allows anyone affected by PSP & CBD to support PSPA whilst honouring a loved one during the festive season. By dedicating a bauble in honour of someone with PSP or CBD on our digital Christmas tree, you can help support PSPA services such as the Helpline. Learn more about the difference you can make and donate to the Bauble Appeal, here: https://lnkd.in/eVdSS8Ct #PSPASupport #BaubleAppeal #CharityChristmas #PSPAware #ChristmasAppeal #CharityDonations

Today marks the start of #RememberACharity Week. Families who benefit from PSPA support often wish to leave a legacy in their wills to show thanks and appreciation and to help other families in the future. Jenny Allen was diagnosed with PSP in 2011.  The support from PSPA‘s Helpline and Support Groups inspired Jenny to leave a legacy for PSPA to continue its vital work. Jenny’s daughter Katie, said: “Mum leaned heavily on the support that PSPA offered, both via the Helpline and the Family and Friends Days where all of us could meet other people affected by PSP.  That helped her and us come to terms with it, as well as some practical aspects like advice on adapting her house, setting up care and what to expect as the condition progressed. She used to feel anxious about what having PSP meant for my brother Nick and me, so the Helpline was a big reassurance.  She knew we could ring up when we needed advice and support and that we weren’t alone. “Mum’s legacy is not huge but she wanted to give something back to the people who supported her.  She always had the longer game in mind – finding a cure, while also realising how the Helpline is vital in the here and now when you need practical or emotional support with that personal touch. “Mum was never bitter, she smiled and kept laughing for as long as she could and she faced PSP as pragmatically as with every other sadness and challenge in her life.  Leaving money in her will to PSPA was, for Mum, an obvious way to help others dealing with this ‘brute of a disease.” If you would like to leave PSPA a gift in your will, download our Gift in Wills guide: https://lnkd.in/eA3nK6xV #Legacy #GiftinWill #WillsGift #SupportPSPA #SupportForFamilies #ProgressiveSupranuclearPalsy