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RALLY ROUND: One hundred people set to walk 100 miles for St Albans boy with genetic condition

 Published on: 20th June 2023   |   By: Bryn Holmes   |   Category: Uncategorized

One hundred people will take part in a 100-mile fundraising challenge, inspired by a St Albans boy with a genetic neuromuscular condition.

Rupert Mosey was just eight weeks old when he was diagnosed with spinal muscular atrophy (SMA), a serious degenerative disease that causes muscle wastage and weakness.

However, thanks to gene therapy treatment from Evelina London Children’s Hospital and Great Ormond Street Hospital, Rupert has continued to improve and recently celebrated his second birthday.

Parents George and Charlie decided to raise awareness of the condition and funds for clinical research to improve the lives of children like Rupert.

The husband-and-wife duo have now set up a charity, Rally Round Rupert. As part of their first major fundraiser, around 100 people have decided to take on a 100-mile walk across the Cleveland Way in North Yorkshire from June 23 to 25.

Speaking to St Albans News, Charlie said: “£100k is the funding amount needed for a nutritional and growth clinical study with Great Ormond Street Hospital and University of Milan, which will benefit children globally affected by SMA.

“It’s incredibly overwhelming to see the amount of support we have received for the charity.”

At the time of writing, the fundraiser has raised £80,800. To donate, visit their GoFundMe page.

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