Kit is running the TCS London Mini Marathon on Saturday 26th April for RALLY ROUND RUPERT, a charity so close to our hearts.

The son of our friends, 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. Rupert's parents, George and Charlie, set up the RALLY ROUND RUPERT charity in early 2023 to help others living with SMA. The work that they have done in the face of such personal challenge is truly inspiring and will change the lives of many families.

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

Thank you for all your support! X

About the charity - 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).