Saturday 28 August, 6:30pm
Join us for a talk by Professor Laurent Servais researching Spinal Muscular Atrophy, with the event profits going to the charity ACE SMA.
Laurent Servais is Professor of Paediatric Neuromuscular Disease at the University of Oxford. He has been instrumental in the design or the conduct of the different studies that have led to the validation of innovative treatments in Spinal Muscular Atrophy. He initiated the first European newborn screening pilot for SMA in Southern Belgium in 2018. This successful program that allows the screening of 55.000 newborns/year- and so far the early detection and treatment of 12 patients- has been transitioned in the official program in Belgium early this year. Laurent is currently raising a similar program in the UK.
Laurent will present the different treatments available today for spinal muscular atrophy, and will emphasize how patients life has been progressively transformed by standard of care, innovative therapies and now newborn screening. Using the example of spinal Muscular Atrophy, he will explain what we have learnt hover the last 5 years that could be transformative in the care- and maybe the cure- of devastating diseases of children.
In 2019 Mike and Sophie’s daughter was diagnosed with Spinal Muscular Atrophy (SMA). SMA is a rare, genetically inherited neuromuscular condition, it makes the muscles weaker and causes problems with movement. Although a very challenging diagnosis they are fortunate to have access to the treatment that she needs. However, they hit problems with gaining access to physiotherapy, as well as a lack of awareness in how the treatment could help children with SMA.
Mike and Sophie decided to set up ACE SMA to help other children who have had treatment reach their potential and enable them to take part in as much exercise as they can to help them live a fun and active life. The more you use the less you lose! The importance of using muscles and keeping the motor neurons active is essential for people with SMA to remain as independent as possible. Once a motor neuron is lost, there is no way of retrieving it.
The project is run in partnership with The University of Oxford and will be overseen and delivered by Professor Laurent Servais & his team. Laurent is Professor of Paediatric Neuromuscular Diseases at the MDUK Oxford Neuromuscular Centre and Invited Professor of Child Neurology at Liège University.