PSPA invites you raise awareness of PSP & CBD


This May, PSPA is relaunching a fun campaign encouraging people to ‘lace up’ to raise awareness of rare brain conditions Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).

The national charity, who supports people living with PSP & CBD, have teamed up with PSPA supporter Scott Smith to relaunch Ed’s Lace.

Ed’s Lace encourages people to wear a lace which has one of the plastic ends cut off, so it frays. The fraying helps to demonstrate the progressive nature of PSP & CBD and aims to open up conversations about the conditions.

Scott originally created the campaign back in 2015 after his grandfather Ed passed away from PSP.

The idea came to Scott as he was studying for a Masters in Science Communication and was looking to help PSPA increase awareness as part of his dissertation project.

After pitching the lace idea to PSPA, who loved it, the campaign became a real hit with more than 4,000 laces distributed worldwide that year.

November 2022 marks the 10th anniversary of Scott’s grandad’s death, so he jumped at the chance to support the charity once more by relaunching the campaign this year in his grandad’s honour.

Scott said: “The idea came to me whilst I was studying at university and I was trying to describe to my girlfriend (now wife) what I had learnt about the scientific process that happens in the neurons (brain cells) of those living with PSP & CBD. ‘It’s like when a shoelace starts to fray”, I said. And that was it, the moment Ed’s Lace was born.

“It was amazing hearing so many people talk about my grandad, PSP & CBD and become united in raising awareness, all by wearing a lace in his name. So, I was absolutely delighted when PSPA approached me again earlier this year to say they would like to relaunch the campaign.

“I know how much awareness the campaign raised last time. It excites me to think we could do it all over again or even better, raise even more awareness this time around!”

Carol Amirghiasvand, PSPA Director of Engagement, added: “It’s been great to work with Scott and his family to relaunch such an amazing community led campaign to raise awareness of PSP & CBD.

“Ed’s Lace had such a fantastic response last time around and we hope our supporters will once more embrace the idea and help more people spot the signs and symptoms of PSP & CBD.”

PSP & CBD are neurodegenerative conditions caused by the loss of nerves cells in the brain. Over time this causes problems with balance, swallowing, speech, vision and mobility. Currently there is no treatment or cure.

During the campaign, PSPA and Scott, are encouraging people to wear Ed’s Lace in far and wide places, as well as to get creative and find alternative ways to wear the lace, other than in your shoe.

Ed’s Lace is available to buy for £2 at…

Share photos of you and your family wearing Ed’s Lace with pride using the hashtag #EdsLace and tagging @PSPAssociation on Facebook and Twitter, and @teampspa on Instagram.