Nurse And His 30 For 30 Challenge To Mark Charity Anniversary

Steve from West Midlands and Shropshire, but studied in Leeds and now living in Durham will be helping to mark the charity’s milestone anniversary by completing a 30 themed challenge through the remainder of 2024. To do this Steve will be completing a number of “30” based challenges raising vital funds and awareness for the charity which was registered with the charity commission 30 years ago.

PSPA was founded in April 1994 by Brigadier Michael Koe after his wife Sara was diagnosed with a rare neurological condition called Progressive Supranuclear Palsy (PSP). Michael found at the time of Sara’s diagnosis there was no awareness of the condition and also little support for families affected. He wanted this to change.

The aim of the 30 for 30 challenge is to mark 30th Anniversary of PSPA’s support as a charity. In addition, it is also a great opportunity to raise awareness of PSP and related condition Corticobasal Degeneration (CBD).

Steve said: “My uncle recently was diagnosed with PSP and sadly died shortly afterwards. His pathway to diagnosis was long and tortuous, with his symptoms relatable to many neurological deficits. My aunt and cousins were on hand to support but without knowing what they were facing. The pressures were felt throughout our close-knit family. Before his diagnosis I was unaware of the disease, but now have a mission to inform as many people as possible and help to raise funds for research into this dreadful disease. I hope that this in the short term will ease the diagnosis pathway and provide ongoing family and patient support. Ultimately, the hope has to be to find a cure.”

Rebecca Packwood, PSPA CEO, said: “30 years ago, Michael, our founder, established PSPA, a UK charity with the aim of creating a better future for everyone affected by PSP & CBD.

The landscape for affected families has improved, thanks to Michael’s hard work and dedication. But there is still much to do.

Too many people, in fact 60% according to our 2022 survey, still receive a misdiagnosis. There are no standards of care for people living with PSP or CBD. And, currently no treatment is available to delay or stop the conditions in their tracks. We want this to change.

In 30 years’ time, we want to be able to look back and see the difference we have made; helping people receive a diagnosis faster and that people living with a diagnosis, receive appropriate care and support which is co-ordinated, has continuity, and is compassionate.

The 30 for 30 challenge is a unique opportunity for people to get involved in making this change for the PSP & CBD community. Raising funds and much needed awareness across the UK. We can’t wait to see what challenges people take on for PSPA.”

For more information about PSPA’s history and the 30 for 30 challenge, please visit: www.pspassociation.org.uk

To donate to the cause please visit: donation page