Families of those with a rare chromosome disorder are taking part in a national teddy bear relay organised by UK Charity the Smith-Magenis Syndrome Foundation.
More than 15 families are taking part in the relay, which began in May 2011, to increase awareness of Smith-Magenis syndrome (SMS) and raise funds for the charity. The northern event team raised over £3,000 by taking teddy bear Genny on a sponsored Bike ride. The intrepid teddy has also “run” a half marathon, travelled up the three Peaks, been “swimming” in the Midlands and acted as mascot for football team the Kidderminster Harriers.
SMS is a genetic disability due to a microdeletion or abnormality of chromosome 17. Those with SMS tend to have mild to moderate learning difficulties, delayed speech and language skills, distinctive facial features, sleep disturbances and behavioural problems.
The condition is rare, making it hard to detect and diagnose as many professionals have never heard of it. The Foundation estimates that there are about 100 diagnosed cases of SMS in the UK.
For more information about Smith-Magenis syndrome, please visit:
www.smith-magenis.co.uk
