A well-known East Neuk family is marking the 20th anniversary of a charity close to its heart with a fresh resolve to promote its cause.
Former Craw’s Nest Hotel manager Ian Birrell (70) has Progressive Supranuclear Palsy (PSP), a neurological condition for which there is no cure.
It’s caused by the progressive death of nerve cells in the brain which, over time, leads to difficulties with balance, movement, vision, speech and swallowing. The average life expectancy from the onset of symptoms is seven years.
The PSP Association, launched in 1994, is the only national charity representing the needs of people living with the illness.
Since Ian’s diagnosis around five years ago, Elizabeth has organised a number of events to raise the profile of PSP.
Her efforts, and those of theors, have also helped gather over £20,000 for the PSPA, which will go towards helping research and raise awareness of the condition.
PSP had quelled Ian’s “life and soul of the party” personality and he was much quieter, said Elizabeth.
But she added: “People pop in to see him now and show support, and his face lights up.
“He appreciates the effort people make.”
Elizabeth said she does everything she can to improve knowledge of PSP.
“I have awareness information cards that I take everywhere with me and give out to people in the community, I also dropped some off at my local GP practice.”
More details on the condition are at www.pspassociation.org.uk or email firstname.lastname@example.org.