ACE SMA’s first goal is to raise money in order to fund clinical research into the enhanced benefits of bespoke and regular physiotherapy for children with SMA, who are also receiving the disease’s modifying treatments. The aim of this two year project will be to gather enough evidence in order to create long term change in the way in which physiotherapy for SMA is funded and provided by the NHS and/or drug companies, as well as run a pilot that can be rolled out across the country.
The project will be in partnership with The University of Oxford and will be overseen and delivered by Professor Laurent Servais and his team.
Spinal Muscular Atrophy is a rare, genetically inherited neuromuscular condition. Young children’s symptoms present themselves at different times depending on the severity of the condition. Signs of SMA may include; muscle weakness, breathing problems, delayed gross motor skills and difficulty with crawling and walking. There are four types of SMA each with varying levels of severity.
Of course everybody is welcome to undertake their own fundraising efforts for ACE! If you would like ideas and inspiration, please email firstname.lastname@example.org and we will email you a fundraising pack. We will support all fundraisers by sending the details out on our mailing list and use our social media to promote your activity.
In 2019 our daughter was diagnosed with SMA. Although a very challenging diagnosis we feel very fortunate to have access to the treatment that she needs. However, we hit problems with gaining access to physiotherapy, as well as a lack of awareness in how the treatment could help children with SMA.
We 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.
Although SMA is the most common genetic cause of death in children under two years old, the disease is still relatively unknown. We would like to raise the profile of SMA in the UK, to increase fundraising and allow more money to be invested into research and technology, ultimately improving the lives of those living with the condition.
There are currently three approved SMA treatments available in the world, and only one in the UK. These are proving to have a significant impact on the natural history of SMA, especially when treatment is given in the early stages of life, and even more so when given pre-symptomatically.
We want to support new research and trials of the ever-improving landscape of SMA treatments.
ACE SMA’s principal target and long-term objective is to enable children to have as much mobility and free movement as they can. Although there is plenty of evidence to demonstrate that movement is hugely important to quality of life, until recently there has been limited scope for what this can actually entail for the majority of sufferers due to the debilitating nature of the condition. Now that new treatments are available there is a better chance of SMA sufferers not only being able to move more freely but even being able to walk where previously they would not have.
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