On Tuesday 20th May our CEO, Giles set off from Edinburgh Castle to start the 435 mile journey to London.
The distance was particularly relevant as it represents the number of babies born with SMA in the UK since the UK rejected SMA to be added to the bloodspot programme in 2018.
At Edinburgh Castle he was joined by Professor Tom Gillingwater from the University of Edinburgh along with several of his graduate and post graduate students who are actively working on the genetics of SMA and how to better understand the condition.
Giles then visited the Royal Hospital for Children & Young people in Edinburgh with several nurses and families waving him off on the journey.
After a tough day of riding through the Scottish borders, Dumfries & Galloway across the border into England and through Carlisle he arrived in Penrith after 115 miles in the saddle.
Day 2 saw a tough start to the day with some steep Cumbrian hills and sweltering weather firstly concerning Shap summit, through the Lake district and then South into Manchester city centre officially marking halfway through the journey with 222 miles now completed.
Now joined by Gary Edgecombe, our Community Engagement Officer, in the support car, they left the busy streets of Manchester on Thursday morning, through Stoke on Trent, Stafford and into central Birmingham before the last stretch of the day through the Warwickshire countryside towards the SMA UK head office in Stratford Upon Avon.
This was a long day in the saddle due to the busy and build up areas but spirits were still really high clocking up another 108 miles.
Leaving early on Friday morning, Giles headed further south towards Oxford to visit the NIHR Clinical Research network where the SMA newborn screening pilot took place in late 2023. After a short stop, the cycle continued through Oxfordshire and into Bucks before hitting heavy traffic coming into Marlow and Slough.
The last stretch of the journey was lifted by going past Buckingham palace, up Bird cage walk before arriving at parliament square where he was joined by some of the SMA UK team and a family Rose, Reece and Arthur Morgan who received Zolgensma at the Evelina exactly 4 years ago to the day.
In total Giles rode 441 miles over 27hrs.
As a charity, we are doing everything we can do to get SMA added to the bloodspot programme and understand the huge heartache families and individuals face when a diagnosis is delayed.
Giles said “We hope that events like this inspire our community to get involved as much as possible to raise awareness for SMA and ensure everyone living with the condition has the best future possible”
Capital to Capital Cycle
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