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DMD research

Duchenne UK wins £1.25m award through People’s Postcode Lottery Dream Fund for revolutionary mobility suit in partnership with Spinal Muscular Atrophy UK and University of Liverpool

Duchenne UK is delighted to have been awarded £1.25 million from People’s Postcode Lottery Dream Fund to develop a ‘SMART suit’, in partnership with Spinal Muscular Atrophy UK (SMA UK) and the Inclusionaries Lab at the University of Liverpool. The SMART Suit will be the first of its kind exoskeleton suit that will help disabled teens and young adults use their arms and upper body.

The Dream Fund is awarded once a year to charities who have developed highly innovative, impactful and collaborative projects. 

Our partnership will develop the ‘SMART Suit’ exoskeleton to restore mobility and give people living with Duchenne muscular dystrophy (DMD) and other progressive diseases back their strength, independence and dignity.  

The initial prototype of the Suit was developed by Solid Biosciences, and, through this programme, and thanks to the Dream Fund, Duchenne UK will take on the development and bring it to market.  

Emily Reuben, CEO of Duchenne UK, says:  

“We are absolutely thrilled to receive this transformative award which will have a truly game changing impact on young lives.  

For people living with progressive conditions like DMD and SMA, losing upper body function means losing the ability to feed yourself, put your hand up in class, or hug your loved ones.  

Despite incredible technological progress elsewhere, this is a problem that has gone without true innovation in the last 30 years. Because of this, people living with upper-limb disability face barriers in work, education, and their social lives.   

With the help of this award, we can finally change this. A huge thank you to players of People’s Postcode Lottery and the Dream Fund for enabling our dream project to become a reality.”  

Angela Smith-Morgan, CEO of SMA UK, says: 

“We are delighted to be a winner of this year’s Dream Fund.   

Working with Duchenne UK and the Inclusionaries Lab at the University of Liverpool we have put together our “Dream” project to bring transformational assistive technology to people living with neuromuscular conditions.  Our dream is to create a ‘Wearable Suit” light enough to be worn under clothes, which will replace lost upper body strength – this really will be life changing for people living with SMA and other conditions” 

Dr Farnaz Nickpour, Director of The Inclusionaries Lab at the University of Liverpool, says: 

“This is a unique and timely opportunity to address a long-term ‘wicked problem’ in the design and commercialisation of impactful and desirable solutions for important parts of our society currently disserved by innovation.  

Through our innovative collaboration with Duchenne and SMA UK, we want to ensure advanced inclusive and human-centred design principles are embedded in the SMART Suit, and moreover, make our interdisciplinary approach and processes in this project, accessible and applicable in many other areas similarly in need of better more systemic solutions.” 

Laura Chow, Head of Charities at People’s Postcode Lottery said: “The Dream Fund offers an unrivalled opportunity for charities and organisations to work together to deliver an original, high impact, innovative project.  

“We are thrilled that SMART suit has been named one of winners of the 2022 Dream Fund, made possible thanks to players of People’s Postcode Lottery.” 

Published on 18 May 2022

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Categories DMD research Duchenne UK news Patient care & support
Note for editors

Duchenne UK

What is Duchenne muscular dystrophy?

Duchenne muscular dystrophy (DMD) is a genetic disease diagnosed in childhood; it is the most common and severe form of muscular dystrophy. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and a shortened life expectancy. It almost exclusively affects boys. In the UK there are around 2,500 boys affected and around 300,000 worldwide.

Who is Duchenne UK?

Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. As the leading DMD charity in the UK, we connect the best researchers with industry, the NHS and families to accelerate every stage of drug development. Together, we will find effective treatments for this generation of people living with DMD.

Our president is HRH The Duchess of Cornwall. Our patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.

Media contact: amy@duchenneuk.org

What is the People’s Postcode Lottery Dream Fund?

The Dream Fund gives organisations the chance to deliver the project they have always dreamed of, but never had the opportunity to bring to life. The Dream Fund invites charitable organisations across Great Britain to think big, be ambitious and collaborate with other not-for-profit partners to deliver their dream project.
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Spinal Muscular Atrophy UK

Spinal Muscular Atrophy UK (SMA UK - the Charity) provides accurate information and a wide range of support to everyone affected by SMA.

We advocate to improve access to the best care, services and drug treatments and fund research into the clinical development of drug treatments that improve the complexities of SMA and underlying disease mechanisms.

Spinal Muscular Atrophy (SMA) is a rare, genetically inherited neuromuscular condition that causes muscle weakness and loss of movement due muscle wasting (atrophy). This may affect crawling and walking ability, arm hand, head and neck movement as well as breathing and swallowing.

There are different forms of SMA, Types, 1, 2, 3 or 4 which is reflective of the age of onset symptoms and the severity of the condition. There is a wide spectrum of how severely children and adults are affected.

In the UK there are approximately 1,340 people living with SMA.

SMA is passed from parents to their children through the SMN1 gene. In the UK, approximately 1 in 40 people carry the SMN1 gene (Approx. 1.5million people)

1 in every 6,000 – 10,000 births are affected by the condition. In 2020 this would have been 68 babies in the UK who were born with SMA. 60% (41) of these would have the most severe SMA Type 1.

Media contact at SMA UK:
Lucy de’Lemos – Head of Communications and Fundraising, SMA UK
Email: Lucy.delemos@smauk.org.uk
Telephone: 07841 537 305
Website: https://smauk.org.uk/
Registered Charity Number: 1106815

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University of Liverpool

The University of Liverpool is one of the UK’s leading research institutions with an annual turnover of £597.6million. Liverpool is a member of the Russell Group. Visit https://www.liverpool.ac.uk/or follow us on Twitter at @livuninews

The Inclusionaries Lab

The Inclusionaries is an advanced design research lab for inclusive and human-centred design and innovation, based at the School of Engineering at the University of Liverpool. The Inclusionaries Lab leads strategic design research in four areas including Inclusive mobility, Healthcare innovation, Psychosocial inclusion and Design for end of life. Visit: www.inclusionaries.com
Or follow @inclusionaries @farnaznickpour on Twitter