Join us for the joy of a charity taking its first steps to help those living with SMA to take their first steps.
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.
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.