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Lace up to raise awareness of PSP and CBD: PSPA relaunches fun campaign to raise awareness of rare brain conditions progressive supranuclear palsy (PSP) and corticobasal degeneration (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 and CBD, has 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 and 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 master’s 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 learned about the scientific process that happens in the neurons (brain cells) of those living with PSP and 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 and 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 and 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 and CBD.”

PSP and 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 pspassociation.org.uk/fundraising/shop

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.   


About PSPA

PSPA is the only UK charity dedicated to improving the lives of people living with progressive supranuclear palsy and corticobasal degeneration.

PSPA promotes and funds research to understand the causes of progressive supranuclear palsy and corticobasal degeneration, improve diagnosis, develop new treatments and ultimately find a cure.

PSPA provides information and support for everyone affected by progressive supranuclear palsy and corticobasal degeneration to enable them to live the best life they can.

PSPA also raises awareness, particularly with decision makers and healthcare professionals, so they can recognise the conditions and have the skills and knowledge to help those affected access the right services at the right time.  

For more information please visit pspassociation.org.uk


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