’When you look up to the sky, or see our logo, remember our story. If there are clouds making it dark, never forget that the brightness of the sun, moon and stars are only temporarily obscured and waiting to re-emerge.’’

I am running a wee 13.1 miles in sunny Newcastle in September 2023 at the Great North Run.  This will be my 2nd GNR and 3rd half marathon. Whilst the fish and chips at the end are a massive incentive, I am delighted to be raising funds and awareness for Smith-Magenis Syndrome.

My cousin’s beautiful little girl, Izzy, was diagnosed with SMS at 23 months old, upon hearing the diagnosis this was a condition which I had never heard of.  I wish to raise awareness for SMS and raise vital funds to support the special 1’s affected by SMS and their truly incredible and inspiring family’s.  

SMS is a genetic disability due to a microdeletion or mutation on chromosome 17. The major features of Smith-Magenis Syndrome (SMS) include mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances, and behavioural problems.

Help us to ensure every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community.  The Smith-Magenis Syndrome (SMS) Foundation UK is at the heart of our community. We will be the first point of contact for those seeking information and support. Nobody should ever feel isolated or alone. We value every person affected by this genetic disorder and shall empower them to reach their full potential as respected members of society.

Connecting Families – Raising Awareness – Building Futures

https://smith-magenis.org