UNDERSTOOD – IS THAT TOO MUCH TO ASK?
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 standards of care providing symptom management within two months.
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 understood@pspassociation.org.uk
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.
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
Raynor and Moth Winn, have been PSPA supporters since Moth was diagnosed with CBD. In 2024, the couple became Ambassadors for our Understood Appeal to help progress research.
Raynor said: “When we heard PSPA were looking to create a step change in research and awareness of PSP & CBD, we knew we had to get involved.
“Investment in research is the real game changer here. It can help improve understanding of CBD and give answers and solutions to questions we’ve had for years. It can also give people insight into what they can do themselves to maintain their independence as long as possible.”
