100 walk 100 for SMA

Spinal Muscular Atrophy (SMA) is a genetic, neuromuscular condition that causes muscle weakness and wastage due to a loss of motor neurons. Each year about 1 in 10,000 children are born with the condition and before 2016, without treatment, most children with SMA Type 1 were expected to live for less than two years. Today, early diagnosis can significantly abate the devastating impacts of SMA, however, more awareness is needed to recognise the symptoms and clinical research is essential to improve quality of life for those affected.

Between the 21st to the 23rd of June 2024, a group of 100 volunteers will attempt to walk the entire length (over 100 miles) of the Cotswold Way, to raise awareness of the condition and funds in support of clinical research. In addition, the team will also attempt to transport Gary Edgecombe, an individual with SMA Type 3 (a variant of the condition that onsets later in life) the entire length of the route in a custom-built wheelchair. In doing so, the charity aims to shine a light on the current levels of inaccessibility, typical of most UK rural walkways. As part of this journey and where necessary, Gary will be lifted over styles and parts of the route that just don’t allow those with restricted mobility to access – a truly symbolic journey!

By raising funds and awareness, we hope we can make the lives of so many with SMA better.

You can follow Rupert’s journey (a little boy with SMA type 1) on Instagram, @rallyroundrupert.