Ian Williams

Ian's page

Fundraising for ACT for SMA
raised of £250 target
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Event: Simplyhealth Great South Run 2019, on 20 October 2019
In memory of Sophie Harling

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RCN 1133272


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I am running the Great South Run in memory of a child of close friends of mine. This is their story:

Sophie was born with spinal muscular atrophy type 1 – a rare genetic neurological condition which is defined by progressive and degenerative muscle weakness and a severely limited life expectancy. 80% of SMA type 1 babies die before their first birthday.

Sophie was diagnosed during the summer of 2016, after spending six weeks between the local hospital and Alder Hey. Sophie’s parents were able to take her home in August 2016 to make memories and spend time as a family. Sophie passed away suddenly on the 22nd October 2016, aged just 10 months.

Sophie and her family received huge support not only from their local hospital and Alder Hey, but also from the wonderful ACT for SMA. To help others in difficult situations, we are continuing to raise funds in Sophie’s memory for ACT for SMA so they can continue to support affected families across the UK.

To celebrate Sophie’s life, family and friends will be running the Great South Run to raise much needed funds for this amazing charity. On the day, we will be joined by family and friends both in the race and cheering on the side lines. Please support us in reaching our target amount which will ensure ACT for SMA can continue to provide essential support to affected families all over the UK.

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About the charity


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RCN 1133272
The Ally Cadence Trust provides support to families affected by Spinal Muscular Atrophy Type 1. Children with SMA Type 1 have limited movement and may have breathing difficulties. We offer many items of specialist equipment to them that are not readily available on the NHS

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