Elevex

Two families a week in the UK receive the devastating news that their child has Duchenne muscular dystrophy. It affects c.2,500 people in the UK and 300,000 worldwide. Children born with DMD lose the ability to walk in their teens, later they’ll lose the strength in their upper body, eventually it affects their heart and lungs. Life expectancy is late 20s.

Spinal muscular atrophy is also a rare, genetic, neuromuscular condition affecting c.1,300 people in the UK. One in 10,000 babies worldwide are born with a type of SMA. It causes progressive muscle weakness and loss of movement due to muscle wasting. There are different types of SMA and a wide spectrum of how severely children and adults are affected. Approximately 60% of babies born with SMA have Type 1, the most severe form of the condition.

Despite technological advances in other fields, there are a lack of devices that address the devastating impact of the gradual deterioration and loss of upper body function. We’re helping children live longer but failing to give them access to equal educational and social opportunities.

In 2018, Duchenne UK invested £70,000 towards a $1M project by Solid Biosciences into early exploratory work, which produced the first proof-of-concept prototype of Elevex.

Thanks to Players of the Postcode Lottery and charities Alex’s Wish and Joining Jack, we’re going to develop this prototype and take it to market, into the hands of the people who need it the most.

Elevex is a revolution in assistive technology!

It will be a piece of clothing, comfortable enough to wear for long periods, fitted with tiny motors to assist in restoring upper body function and strength.

Using the latest developments in technology we’ll deliver a truly life-changing device that will help smash down barriers to opportunity, by putting innovative technology into the hands of people living with progressive neuromuscular conditions.

We are proud to be working with the University of Liverpool and SMA UK to deliver this ground-breaking project.

The Inclusionaries Lab at the University of Liverpool has unrivalled unique expertise in paediatric mobility research and a track-record in pioneering, innovative and human-centred design research. They will ensure that end users and stakeholders are at the heart of decision making on the Elevex project.

SMA UK provides accurate information and a wide range of support services to people living with SMA. They are also working to improve access to the best care, services and drug treatments for SMA today and funding research projects that can change tomorrow.

We are grateful to Players of the Postcode Lottery, and charities Alex’s Wish and Joining Jack for generously supporting the Elevex project, helping us to bring it to life.

The problem of reduced upper body function is not unique to DMD and SMA. It also affects people living with other conditions affecting the upper body, including people living with other neuromuscular diseases, stroke survivors and people injured in accidents. The Elevex has the possibility of delivering benefits to these groups too.