100 WALK 100 miles Rally Round Rupert 2024

* All money raised goes to fund clinical research to improve the lives of those affected by Spinal Muscular Atrophy (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 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.

In June 2024, a group of 100 volunteers will attempt to walk the entire length (over 100 miles) of the Cotswold Way, to help raise funds in support of clinical research. To increase awareness of the condition and to highlight the inaccessibility of UK rural walkways, the team also aim to transport Gary Edgecombe, an individual who has SMA Type 3, a variant of the condition that onsets later in life. Gary will be transported in a custom-built wheelchair, and where necessary, lifted over walls and parts of the route that just don’t allow those with restricted mobility to access – a truly symbolic journey!

Our son, Rupert, was diagnosed with SMA Type 1 (the most serious type of the condition) when he was just 8 weeks old. His diagnosis was delayed because doctors did not identify his symptoms, but at 11 weeks old he was given life saving gene therapy on the NHS. He has to work incredibly hard every day, with daily physio and chest exercises to gain strength and mobility. We set up RALLY ROUND RUPERT charity in early 2023 to help others living with SMA.

To learn more about SMA you can follow Rupert’s journey on Instagram, @rallyroundrupert.

Thank you for all your support!

About the charity - RALLY ROUND RUPERT was set up to relieve the need and protect the health of children and their families affected by Spinal Muscular Atrophy (SMA) throughout England & Wales for the public benefit. We work to improve the understanding and knowledge of Spinal Muscular Atrophy (SMA) among the public, and provide financial support to further advance clinical research into Spinal Muscular Atrophy (SMA).