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.

The son of a friend of a friend - Rupert - was diagnosed with SMA Type 1 (the most serious type of the condition) when he was just 8 weeks old. 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. His parents set up the RALLY ROUND RUPERT charity in early 2023 to help others living with SMA.

To learn more about Rupert's battle against SMA you can watch this video https://www.youtube.com/watch?v=IXtacElg8p4 and follow Rupert’s journey on Instagram, @rallyroundrupert.

In June 2025, as part of a group of 100 volunteers, I will attempt to walk over 100 miles of the Jurassic Coast Path, to help raise funds in support of clinical research.

In addition, the team will attempt to transport Stan, who has SMA Type 3 (a variant of the condition) the entire length of the route in a custom-built wheelchair. As part of this journey and where necessary, Stan will be lifted over parts of the route that just don’t allow those with restricted mobility to access – a truly symbolic journey!

Your sponsorship will be deeply appreciated by all those concerned, thank you for all your support!

More information about RALLY ROUND RUPERT: 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 by: a. Working to improve the understanding and knowledge of Spinal Muscular Atrophy (SMA) among the public. b. Providing financial support to further advance clinical research into Spinal Muscular Atrophy (SMA).