A Lymm resident welcomed 100 visitors to the first BIG Brain Ball at the Lymm Hotel, raising over £3,000 for a national charity that supports people with a rare disease.
Scott Smith, aged 26, hosted the event to raise funds for the Progressive Supranuclear Palsy Association (PSPA), a charity close to his heart.
Scott’s late grandfather, Edmund Wibberley, developed progressive supranuclear palsy (PSP) before passing away in November 2012, the same condition singer songwriter Peter Sarstedt lived with before dying in January this year.
Scott said: “Ed was misdiagnosed for a few years at first with Parkinson’s disease. It was only when a nurse said some of his behaviours were not typical of Parkinson’s disease that we found out he may have PSP.
“It was a really tough time for my grandfather and family. Not many health care professionals knew about PSP. The public didn’t seem to know either. It was very isolating. Ed had to wait a few years to get an appointment with a PSP specialist. He sadly passed away a few days before his first appointment.
“No one should have to go through what Ed did. It’s tough enough that there is no cure for PSP, but it is devastating when you’re fighting that battle alone.”
PSP is caused by a progressive death of nerve cells in the brain and leads to difficulty with balance, movement, vision, speech and swallowing. The average life expectancy is around seven years from the beginning of symptoms.
Scott, who works for another national charity, is a volunteer at the PSPA and helps run a local support group. He will also be running the London Marathon in April and is eager to raise a total of £5,000 for the charity.
Scott said: “The PSPA is a fantastic charity helping people affected by PSP. From funding research with hope to find a cure for PSP, to funding the helpline – every single penny will make a difference. Living with PSP shouldn’t be an isolating experience. With everyone’s support and generosity, the PSPA can use the money to support the 4,000 or so people living with PSP in the UK. And together we can champion change to improve the lives of those living with PSP.”