100 Mile Walking Weekender: Steps towards SMA support

Can you help make our steps count, making a big difference with a small donation?

Making our miles matter and steps count, we're walking 100 miles to help fundraise money in aid of RALLY ROUND RUPERT by walking the Cotswolds Way 100 miles with 100 folks, family & friends to take on this challenge together for SMA support.

Our friends son, Rupert, was diagnosed with SMA Type 1 (the most serious type of the condition) when he was just 8 weeks old. His diagnosis was delayed because doctors did not identify his symptoms, but 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 RALLY ROUND RUPERT charity in early 2023 to help others living with SMA.

* All money raised goes to fund clinical research to improve the lives of those affected by Spinal Muscular Atrophy (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 learn more about SMA you can follow Rupert’s journey on Instagram, @rallyroundrupert.

Every donation will help each and every step forwards for Rupert and hundreds of children like him, towards a better life and brighter future for children with SMA and their families who care for them. Because every child and every family, whatever challenges they face, can be happier and healthier with support from all of us who can rally round them.

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).

Watch Ruperts Inspirational Story Here

Thank you for supporting us every step of the way!

Lovingly,

Sam & Lauren Wilks (Team SLW)

Walking towards the good in life. One step at a time.