PSPA

#MyNeuroSurvey by The Neurological Alliance launched on 22nd July. Share your experiences of living with or caring for someone with PSP & CBD in My Neuro Survey today to help improve services. By taking part you will help improve treatment, services and care for everyone affected by neurological conditions. The survey takes around 20 minutes to complete. It’s completely anonymous and secure. Complete here: https://lnkd.in/eYsNgaTZ #MyNeuroSurvey #NeurologicalAlliance #NeurologicalCondition #ImproveServices #RaiseAwareness

Big thank you to Mary and Mike Crackles for hosting a great Walk for Hope event close to their home and raising an amazing £5,000! You can read details about their walk in this local newspaper article: https://lnkd.in/eRugNBC2

Today's #MondayMotivation is Laura Hudson who took part in the Grantham Rotary Club's Swimarathon in February. This entailed three days swimming as a mermaid with the children taking part and bringing all the magic to the weekend 🧜♀️ ✨. The aim was to help raise money for local causes, groups, projects and community work. The Rotary Club kindly donated a cheque of £250 to Laura for all her voluntary help over the weekend and for winning the Swimarathon Person 2024 award to donate to a charity of her choice. Laura says: “It was a no-brainer for me to choose the PSPA - without you and the Summer Raffle I simply would not be Miss Ocean World, so I would love to send this to you.” What a fabulous event and achievement! Thank you for choosing PSPA 🧡 💜 #Swimarathon #GranthamRotaryClub #MermaidMagic #PSPASupport #LocalHeroes

Which 30 for 30 challenge will you set yourself? Our 30 for 30 is a fun, 30-themed challenge, cultivated by PSPA supporter Kelly Hooper to celebrate the charity's 30th anniversary while raising all-important funds and awareness. We’ve developed a few resources to help kick-start your 30 for 30 challenge. These include a list of fresh and inspiring challenge ideas, a social placard so you can pledge your support to the campaign using social media, a template press release so you can help raise awareness and share what you are doing, and of course, an all-important sponsorship form! Sign up here: https://lnkd.in/efQbjebN #30for30 #FundRaisingChallenge #PSPA30 #CharityFundraising #TeamPSPA

AWARENESS GRANTS DEADLINE APPROACHING! The deadline for the PSPA Awareness Grants is fast approaching on 31st July. The grants are open to anyone who has a good idea for a project focussed on raising awareness of the conditions, so send your applications in ASAP. Awareness Grants fall into four categories: ▪️ Raising awareness to improve diagnosis ▪️ Raising awareness to improve the quality of care and support ▪️ Raising awareness of the services and support people living with PSP or CBD are entitled to and how to access those services ▪️ Raising awareness to improve the resources allocated to supporting people with PSP or CBD in the health and social care system. There is £8,000 to award for 2024 so don’t miss the deadline - 31st July. For more information and how to apply: https://lnkd.in/eg89EcqF #PSPASupport #AwarenessGrant #RaiseAwareness #PSPAware #AwarenessCampaign #TeamPSPA

Our Hampshire PSPA Support Group met on 26th June in Wherwell Village Hall. Organised by Support Group Co-ordinator Louisa Roberts-West, the group was well-attended with lots of local families. The main aim of this group is to provide a place where people affected by PSP or CBD and their families, friends and carers can meet and give mutual support to each other as well as have the opportunity to chat informally and make new friends. Our guests chatted and bonded over a cup of tea and a delicious slice of cake. The next in-person Hampshire Support Group is taking place on 31 July and we will be joined by Krissy Hanson, the Rehab and Enablement Lead at Mountbatten Hospice. Find details of the Hampshire Support Group here: https://lnkd.in/gH5HWpjV #HampshireSupportGroup #SupportGroup #PSPASupport #InPersonMeetUp

Mark a special date on the PSPA Celebration Wall! Already we have many lovely posts people have added for their loved ones. You can add your own brick too. Help mark our 30th Anniversary by dedicating a brick on our virtual celebration wall with meaningful dates to you and your family. If you and your family would like to mark a particular date, such as a birthday, wedding anniversary or a unique trip away, you can add your milestone to our digital wall alongside a donation of £30 or more. Click here to dedicate your personalised brick: https://lnkd.in/e5Gtg32a #CelebrationWall #MarkTheDate #CharityDonation #PSPASupport #CharityFundrasing #ShowYourSupport

1 in 6 people have a neurological condition, including PSP & CBD – that’s any condition that affects the brain, spinal cord and/or nervous system. That’s why PSPA is supporting The Neurological Alliance #MyNeuroSurvey. Share your experiences and improve care for people affected by neurological conditions: https://lnkd.in/eYsNgaTZ

Today’s #MondayMotivation is Jade Hunns-Marshall. Jade is doing a Walk for Hope to raise money for PSPA in memory of her Mum, Joy. Jade says: “I'm raising money for PSPA as my mum lived with PSP for around 3 years. She sadly died in January 2023 and I'm fundraising for PSPA to have the funds to be able to spread awareness further as there is not a lot of information and healthcare professionals don't know a lot about it. To fundraise, I will be walking 10,000 steps daily throughout August anything over that is a bonus. I'll be grateful for all donations towards PSPA in memory of my beautiful Mum. In addition, I will also be going into doctors' surgeries to provide them with informational posters to pop up in waiting areas should they wish to take them.” Thank you, Jade, and good luck! Sponsor Jade here: https://lnkd.in/eU36yPSg #WalkForHope #TeamPSPA #CharityFundraising #ProgressiveSupranuclearpalsy

Signing up to donate brain tissues is a very personal and individual choice. However, such donations can be valuable to researchers, who can use the tissue to learn more about PSP & CBD. Here Phyllis shares her and Eddie's personal experience of Brain Donation. "Eddie was diagnosed with Parkinson’s and put on medication straight away. This didn’t seem to have any effect though and his symptoms kept progressing. His behaviour changed. He became apathetic. He lost interest in everything and everyone. It was very unlike him. It was these changes that led to his PSP diagnosis. Eddie signed up to donate his brain to research quite quickly after his PSP diagnosis. Eddie was keen to progress research and help others, and we all supported this decision too. It’s such a rare condition, we wanted to do anything to help. When Eddie entered the care home, we set up a care plan which included details of the brain donation, which really helped the process run smoothly. Following Eddie’s death, the care home contacted the nurse at the brain bank, who in turn contacted me to check they were still OK to go ahead with the procedure. A private ambulance came and took Eddie’s body away quite quickly and they removed his brain the next day. There were no additional costs or worries incurred by me and I was reassured that we wouldn’t be able to tell, should we wish to see him before his funeral. During the post-mortem on Eddie’s brain, they actually found he had CBD, not PSP. I was surprised, as I felt the symptoms ticked all of the PSP boxes. Dr Swallows rang me to tell me about their findings so I could ask her questions and get some explanations, which I found helpful. As a family, we hope Eddie’s contribution to research helps people better understand PSP & CBD better in the future, and that maybe one day a treatment can be found.” Learn more about Brain Donation here: https://lnkd.in/eNSDC43u #BrainDonation #MedicalResearch #PSPAware #CBDAware #RaisingAwareness