My daughter Zara was born with Smith-Magenis Syndrome (SMS), which is a deletion or (as in my daughters case) mutation of chromosome 17p11.2. I was due to run this half marathon 10 years ago, but the first of many hospital trips when she was only a couple of days old prevented this, so running just after her 10th birthday seems somehow full circle. 

I am running to raise both funds for SMS foundation and to raise awareness of this rare, little known and massively under diagnosed condition. The Smith-Magenis Syndrome (SMS) Foundation UK is at the heart of our community. They are the first point of contact for those seeking information and support. 

I had the privilege of meeting Anne Smith, after whom the condition is named, thanks to the conference organised by the SMS foundation, as well as many other families, this provides help and guidance to families with SMS infants to those reaching adulthood and everywhere in between. 

I appreciate this is a time of economic struggle for so many families, so please give if you can, and please spread the awareness.