A new charity, set up by parents looking to make a difference for children like theirs, has partnered with the University of Oxford to deliver life-changing physiotherapy for children living with Spinal Muscular Atrophy (SMA).
ACE SMA is hoping to raise an initial £250,000 to fund a groundbreaking research programme run by the University of Oxford’s MDUK Oxford Neuromuscular Centre into the benefits of physiotherapy rehabilitation for children with SMA.
In its most severe and frequent form, SMA is the most common genetical cause of death in children under two years old. More chronic forms cause progressive weakness and loss of function. Current physiotherapy offers can be dated and not able to be accessed regularly by children living with SMA, with many parents assuming responsibility for the support themselves.
Mike and Sophie Howes set up ACE SMA after their daughter Anouk was diagnosed with SMA in 2019, and they encountered first-hand the difficulties in accessing the physiotherapy she needed to walk and play.
The charity hopes the research will demonstrate the benefits physiotherapy can have when factored into care plans and that the findings will help reduce the financial and caring pressures faced by parents across the UK. If successful, it is hoped the programme will be rolled out to hospitals across the UK to help thousands of children and their families access the support they need to live an active life.
Sophie Howes, Founder of ACE SMA, said:
“Before we had Anouk, we didn’t know what SMA was, and when she was born, we not only had to face the impact the disease could have but also navigate the paths towards accessing the very physiotherapy that could enhance her daily life.
“We set up ACE SMA primarily to raise awareness for other parents who may experience the same situation, but also to support new research into innovative ways to support people living with SMA and enabling them to have more freedom. We know we were lucky to be able to access the physiotherapy Anouk needed, but so many other parents don’t have that option, and we want to change that. We want to enable children to have as much mobility and free movement as they can, so this partnership with the University of Oxford is the first step towards realising the future for many children.
“The more physiotherapy available, the better the chance of SMA sufferers not only being able to move more freely but even being able to walk where previously they would not have.”
Dr Laurent Servais, Professor of Paediatric Neuromuscular Diseases at MDUK Oxford Neuromuscular Centre, highlights the importance of raising awareness about SMA and how it can help families and children in the future:
“Every five days in the UK, a baby is born with spinal muscular atrophy which, if untreated, can lead to complex disability and, at its most severe, death. Research programmes like this one will allow us to provide better opportunities for rehabilitation for those living with SMA and ultimately, deliver better outcomes for children and their families.”
SMA can affect crawling and walking, arm, hand, head and neck movement, breathing, and swallowing. Different forms of SMA affect children, young people and adults in a variety of ways, with many requiring a wheelchair or needing a significant amount of assistance in their daily lives.
ACE SMA, which stands for Awareness, Cure, Exercise, aims to increase awareness of SMA and raise money to help other children access life-changing physiotherapy to help them live a fun and active life. This research programme is the first step in finding more technologies and support to enhance the lives of those with SMA.
To celebrate its launch, the charity is hosting a supper and talk from the academics involved in the research on 28 August. The Art of the Possible – Science and SMA will be hosted at Messums Wiltshire, a multi-purpose gallery and arts centre offering artists and collectors a unique environment to experience and engage with creative endeavour.
For more information or to donate to ACE, please visit: www.acesma.co.uk.