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Closed 31/01/2023
The PSP Association

2022 PSPA Research Appeal

Donate towards PSPA's Better Future Fund to help researcher learn more about PSP & CBD to aid earlier diagnosis.
by 198 supporters
Donations cannot currently be made to this page
Closed on 31/01/2023
RCN England and Wales 1037087 / Scotland SC041199

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Im sure many of you will be able to relate to research statistics which highlighted 50% of people living with PSP & CBD receive a delayed diagnosis. I know I can.

My 83-year old mum was diagnosed with PSP in June 2018. It took over four years; numerous GP visits and hospital appointments, two MRI scans, a lumber puncture, a brain shunt procedure and a back operation, to get to that point.

Greater awareness of PSP & CBD will aid earlier diagnosis and improve quality of life

Mum was an extremely busy and active person, so when she started experiencing back pain in 2014, we thought it was just a trapped nerve. But when the dizzy spells began, we headed to the GP.

After ENT and orthopaedic investigations failed to identify any issues, the GP referred mum to an elderly care physician. He suspected Normal Pressure Hydrocephalus. Initially, draining fluid from mums brain seemed to help, so mum was referred to a neurosurgeon to have a shunt fitted. Mum then had a back operation to release the suspected trapped nerve, but mum still didnt feel better.

Mums PSP diagnosis finally came in June 2018 after she had a really nasty fall and ended up in A&E.

Help families live the best life possible with PSP & CBD donate to our Better Future Fund today

Like most people, wed never heard of PSP before mum received her diagnosis. It was a relief to finally have an answer, but it was also a huge shock to find how little known the condition was, even within the medical community. Greater awareness of PSP & CBD would have given mum a diagnosis much earlier.

Earlier diagnosis would have meant fewer referrals, less appointments and more time together. Time to build lasting memories before mums mobility became too poor and she had to move into a care home to meet her changing needs.

100% of donations to our Better Future Fund will support research into PSP & CBD

As soon as my mum was diagnosed, I began raising awareness of PSP & CBD and donating to PSPA research. I know research is the only way we will better understand the conditions, the symptoms and how they progress.

Sadly, mum passed away last summer, and even though mum is gone now, I feel, through my awareness raising and donations to PSPAs research, I am part of a collective effort to

create a better future for everyone affected by PSP & CBD.

And today, I would like to ask if you can help too by donating to PSPAs Better Future Fund so they continue to support vital research to enable families to live the best life possible with PSP & CBD.

Best Wishes

About the charity

The PSP Association

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RCN England and Wales 1037087 / Scotland SC041199
PSPA is the only UK charity creating a better future for everyone affected by Progressive Supranuclear Palsy and Corticobasal Degeneration. If you need support, please contact the PSPA Helpline on 0300 0110 122 helpline@pspassociation.org.uk

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