We want to create the biggest step-change since PSPA was established 30 years ago.
This opportunity for change has been inspired by a large legacy received in 2022 from Elizabeth Fiddler, requesting we advance research into PSP & CBD. As a carer, Elizabeth saw, first-hand the devastation PSP causes when her beloved husband was diagnosed. This was not something she ever could recover from, and on making her final Will, Elizabeth gifted her entire estate so PSPA could create change.
In response, we have launched an appeal to help to turn our research programme on its head.
We want to raise £2 million for life-changing research
Driven by our community, people living with the diseases, their carers and families, to change the future, PSPA is now fighting for PSP & CBD to be Understood.
To become Understood, we are launching a £2 million appeal to fund research that will help unlock:
- Quick and accurate diagnosis
- Immediate treatment
- Consistent care.
Involvement need not be complicated. Consider opening your networks, sharing ideas, and join our community fighting for change.
Sign up to our community and learn how you can help by emailing [email protected]
You can donate to support our ambitious Understood Appeal, to help improve understanding of PSP & CBD, below:
WHY THE UNDERSTOOD APPEAL IS NEEDED
The Understood Appeal has been launched to raise £2 million to enable life-changing research into PSP & CBD to take place.
Leading PSP & CBD Neurologist and Researcher, Professor James Rowe, supports the appeal because he feels a treatment to help slow the progression of the conditions is ‘within reach’.
Learn more about why Professor Rowe feels more funding is needed for PSP & CBD research below.
HOW YOU CAN HELP
There are lots of ways you can help support our understood campaign. From opening up your networks of useful contacts, engaging employees in fundraising, or donating yourself. Keep reading about how you can help make PSP & CBD Better UNDERSTOOD.
DONATE TO THE APPEAL
A donation to the Understood Appeal could help us reach our target of raising £2 million for a much-needed step-change in PSP & CBD research.
Donate using the button below or call the team on 07753236471.
SHARE EXPERIENCES
We want to hear what being UNDERSTOOD means to you. Visit our appeal wall to share your experiences and donate to the appeal.
You can share up to 250 words and a photo about your experiences.
DID YOU KNOW…
The Understood appeal could help to fund a £300,000 research project across two or three years to get us closer to establishing key disease biomarkers, aiding earlier diagnosis of PSP & CBD.
Raising £30,000 could help fund a research assistant to work on a project full time for a year to help establish national care standards for people living with PSP & CBD.
A donation of £3,000 could help fund a PSPA Small Research Grant to pilot a study and gain essential preliminary data needed to develop a bigger project in the future.
UNDERSTOOD APPEAL AMBASSADOR
Jon Garrard, PSPA Trustee and former carer, is an Ambassador for our Understood Appeal.
Jon said: “I am excited to be a part of what will be the boldest bravest, step change for PSPA since the charity was founded 30 years ago.
I am committed to supporting the appeal because it is personal. I lost my dad, Chris Garrard to PSP, he is my inspiration.”
We all have a story to tell, and they all matter.
UNDERSTOOD APPEAL AMBASSADORS
Linda Lattimer has been a supporter of PSPA since its infancy.
Linda’s father was diagnosed with PSP in the 90’s, after being wrongly diagnosed with Parkinson’s due to not much being known about PSP. Once diagnosed, the family was desperate to find out as much as possible about PSP and came across PSPA, where they were relieved to find other people going through a similar experience and who understood.
Linda said: “PSPA has come a long way over the past few decades, and more and more research into both PSP and CBD is going on. That is why I will continue to support this charity. I am hopeful that before too long we will understand these diseases better and that perhaps a treatment or even a cure may be found.”
UNDERSTOOD APPEAL AMBASSADORS
Mary and John have been PSPA supporters since Mary’s PSP diagnosis in 2020.
The couple decided to donate to the Understood Appeal earlier this year to help support research into the condition.
John said: “We have recently donated a substantial sum to PSPA’s Understood research appeal. PSP has been a cruel burden to Mary, but, remarkably, she never complains, and we both realise that there are many others living with this awful disease who have not been so fortunate, and have much more quickly, contracted this disease, and died from it, within a much shorter time span.”
