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Eli and the SMART Suit aim for Glastonbury!

Access to treatments

Eli Crossley told the world of his ambition to play at Glastonbury, as he wowed TV viewers with demonstrations of the SMART Suit. 

The film of him wearing the suit playing the guitar was the most viewed on the BBC website!

Appearing live on BBC Breakfast afterwards he explained how the SMART suit was helping him.

“It will help me in fulfilling my dream and hopefully one day play at Glastonbury with my band. Performing is amazing, it’s one of the things I enjoy most in life, it’s obviously my passion. I love doing it with my friends and that feeling of being able to write a song and then accomplish it is amazing. 

“Sam Fender inspires me a lot – as does my mum.” 

The Suit – funded by players of People’s Postcode Lottery, Alex’s Wish and Joining Jack – helps disabled people keep the use of their arms.  Our proof-of-concept prototype could help him keep playing the guitar and achieve his goal. 

The project is overseen by Duchenne UK, Spinal Muscular Atrophy UK and the Inclusionaries Lab at the University of Liverpool – and aims to harness the tech revolution for the benefit of our community. 

The SMART suit uses a patented technology developed at Stanford University’s research institute, SRI International, which has until now only been used by US start up, Seismic Powered Clothing, to make garments for industrial applications.  The proof-of-concept prototype featured in the story was originally made by Seismic for Solid Biosciences, a US gene therapy company, who passed the project baton on to Duchenne UK in 2022. 

Alex Hallam – whose mother Emma set up Alex’s Wish – has also been showing TV channels how it works. Alex used it while brushing his teeth for ITV Central. “It’s a weird sensation,” he admitted! 

Eli also told BBC Breakfast he hoped the SMART Suit could help people outside the Duchenne and SMA community. 

“Hopefully this will lead to a lot of advancements in the future for technology like this to help all people with disabilities, like people with back injuries such and war veterans.”  

Emily Reuben, CEO and co-founder of Duchenne UK said: 

“This is just a prototype but we are thrilled with progress so far. Thanks to the support of the players of People’s Postcode Lottery, Alex’s Wish and Joining Jack, we are working with our design partners at PA Consulting to develop this into something less bulky and more wearable and bring the benefits of the technology to all those suffering from Duchenne and SMA. But we still have far to go and our amazing supporters can help us get there by donating what they can on the Duchenne UK website.

The SMART Suit | Duchenne UK 

www.duchenneuk.org/donate 

Published on 28 February 2023

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