100 MILE WALK to create better lives for kids with SMA

Over 3 days in June, four of us (Matt, Hannah, Catherine and Lorna) are joining a group of over 100 intrepid individuals on an 'extreme hike' of the Cotswolds Way (distance: over 100 miles).

Our inspiration is Matt's daughter Alexa, who has Spinal Muscular Atrophy (SMA) and - along with thousands of other children - stands to benefit enormously from new breakthroughs in countering this devastating condition.

The inspiration for the whole challenge is Rupert, a young lad with a severe form of SMA, whose parents launched "Rally Around Rupert" in Jan 2023.

We want to help Rally Around Rupert exceed the £100k target, as they have done in the last two years, so please give generously!

All money raised goes to fund clinical research to improve the lives of those affected by 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.

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!