Story
On 8 October, I will be running my first half marathon to raise money for a cause close to my heart.
This is inspired by Chiara, a 17 year old family friend, who lives with the rare genetic Smith-Magenis Syndrome (SMS), which impacts her life in many ways. Chiara is endearing, funny and full of life. Despite her disability, she is a keen reader and loves to dance.
SMS is a genetic disability due to a microdeletion or mutation on chromosome 17. Common challenges include mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances, and behavioural problems.
The SMS Foundation UK provides vital support to individuals and families affected by the condition, as well as raises awareness in the wider community and sponsors research into SMS. The foundation is relatively small and funded through charity fundraising efforts.
Any donations will be greatly appreciated!
To learn more about SMS and how the foundation helps, visit: https://smith-magenis.org/