A Wiltshire family with a child with a rare genetic disorder have been chosen as the face for the online campaign #dreamforgenes. The campaign is to encourage schools to sign up for Jeans for Genes Day – when children and adults wear jeans for the day in exchange for a small donation to the charity. […]
News & Events
A BOGNOR REGIS family of a little boy with a rare genetic disorder has been chosen to front a national charity campaign. Riley Pearson, six, has Smith Magenis Syndrome, to mean he has severe behavourial problems. Along with his dad, Mick, he has become the face of the fundraising bid by Jeans for Genes. The […]
Let me explain Smith-Magenis Syndrome (SMS) through our logo; the Sun, Moon and Stars. The sun and moon represents the body clock. In Smith-Magenis Syndrome the body clock, the circadian rhythm, is flipped. Our children naturally want to be awake at night and asleep during the day. We recognise that our children don’t have a […]
A huge congratulations to our very own trustees Nigel Over and Hazel Wotherspoon, part of a committee of 8 people, and winners of the award Cracking Campaign of the Year, this week at the Scottish Charity Awards run by the SVCO. The ‘#IncludED in the Main’ campaign was set up by the charity Enable Scotland. […]
Our one day conference on sleep in children with brain conditions will disseminate the findings of recent sleep research and and consider the implications for parents, carers and professionals. The conference will launch new information resources that the our Sleep Team, together with the Cerebra Centre for Neurodevelopmental Disorders – University of Birmingham, have developed […]
A big thank you to Capital Document Solutions in Edinburgh for printing of copies of the SMS Booklet ready for this weekend’s conference. A special mention to Joyce Campbell who did all the hard work at Capital Document Solutions to make this happen and Mark Harvie for arranging for this to be done.