We are walking 29km on the 26th June to Raise Awareness, help fund a cure, but primarily to raise funds to give children with Spinal Muscular Atrophy access to the physio needed to help them live a fun active life.

SMA is a genetically inherited neuromuscular condition (It is known as the child form of Motor Neurons Disease). Although it is classed as a rare disease it is one of the most common rare diseases. This in turn means that (thankfully) there has been a lot of research into treatments. Currently there are 3 approved treatments available in the world, they are however also the world’s most expensive drugs.

Despite being the most common genetic cause of death in children under 2 years old, the disease is still relatively unknown. We want to support new research and trials, raise the profile of SMA in the UK, and allow more money to be invested into research and technology, ultimately improving the lives of those living with the condition. Our principle target is to enable children to have as much mobility and free movement as they can something most of us take for granted. Although the amazing treatments are doing incredible things to prevent regression, we think that the effects could be enhanced by combining them with regular and tailored physiotherapy.