Connecting Families | Raising Awareness | Building Futures
Joanne Martland and her son Louie are currently featuring in local newspaper, Wigan Today, to help raise awareness for Jeans for Genes day and Smith-Magenis syndrome. Jeans for Genes day is on Friday 22nd September and the Smith-Magenis Syndrome Foundation have partnered with the charity to help increase awareness. In the article Joanne describes her …
Mum speaks of son’s genetic disorder for Jeans for Genes DayRead More
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. …
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 …
Video star Riley helps make people aware of syndromeRead More
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. …
SMS Trustees Working with Enable Scoop Charity AwardRead More
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 …
