Alex helps road test revolutionary SMART Suit prototype on ITV Central News

Alex Hallam has become one of the first people in the country to road test the prototype of a revolutionary mobility suit.

Alex, who has Duchenne Muscular Dystrophy, has appeared on national TV trying out the SMART Suit – a wearable device which will help disabled teens and young adults retain the use of their arms and upper body as their condition progresses.

Alex is the inspiration behind local charity Alex’s Wish, which was co-founded by his mum, Emma Hallam, 10 years ago to help fund research into treatments and ultimately find a cure for Duchenne.

The SMART suit is being developed by Duchenne UK in partnership with Spinal Muscular Atrophy UK and the University of Liverpool, with funding from players of the People’s Postcode Lottery.

Further investment in the £1.25 million project has also come from Duchenne charities Alex’s Wish, Duchenne UK and Joining Jack.

Test driving the SMART Suit on ITV Central News, Alex demonstrated how it could help him with basic tasks such as brushing his teeth,  admitting to ‘a weird sensation’ as it moved his arm up and down.

Emily Crossley, Co-Founder of Duchenne UK’s son Eli, who also lives with Duchenne and enjoys writing and playing music, donned the suit to show how it might assist him in achieving his dream of appearing at Glastonbury on BBC News and Sky News.

Duchenne is a progressive muscle-wasting disease which affects boys, gradually reducing their ability to walk and, in later stages, to move their upper limbs.

Emma, Alex’s Wish CEO, said: “When children can no longer walk, a wheelchair keeps them moving and independent. But no device exists to help when they lose the use of their arms.

Technological leaps in recent years haven’t been reflected in devices for disabled teens, whose needs are often ignored. We are working to produce a life-changing, wearable, SMART Suit device to restore upper body mobility, and to help children do the little things that are the massive things, hugging mum, brushing teeth or raising their hands in class.

The SMART Suit will transform disabled children into able bodied children. It will have a truly game changing impact on young lives. We’re so grateful to everyone involved and look forward to seeing the suit come to market.”

Duchenne UK’s CEO and co-founder Emily Reuben – who is Eli’s mum – was proud of both boys.

She added: “It was wonderful to see Eli and Alex confidently advocating for our community – as well as Eli showing off his singing skills. The SMART Suit is an incredibly exciting project, which Duchenne UK is very passionate about. We are so grateful to the players of Peoples’ Postcode Lottery, Joining Jack and Alex’s Wish for their support.

We are actively seeking the insight and opinions of people living with Duchenne and Spinal muscular atrophy, along with their families and care teams, on the design requirements of an upper body assistive device. Please contact us at  info@duchenneuk.org if you’re able to help us shape the future of the SMART Suit project.”

The suit’s initial prototype was developed by Solid Biosciences. Duchenne UK has taken on its development and is devising a strategy to bring it to market.

Posted in Uncategorized