Diagnosis If you are viewing this website as the caregiver of a child or adult newly diagnosed with SMS you may be … READ MORE... about That Defining Moment
Supporting Families who have Children and Adults with Smith-Magenis Syndrome
Smith-Magenis syndrome (SMS) is a genetic disability due to a microdeletion or abnormality of chromosome 17. The key symptoms of SMS include:
– mild to moderate learning disability
– severely disrupted sleep pattern
– delayed speech and language skills
– distinctive facial features
– behaviours that challenge like self-harm, aggression, impulsivity and hyperactivity
LEARN MORE ABOUT SMS
The Smith-Magenis Syndrome Foundation is a small UK registered charity that supports families who have children of all ages with SMS and provides information for professionals working with these families.
If you join as a member you will receive a membership pack with useful literature, updates of any social meetings, conferences and fundraising events that are going on! Joining is quick, easy and free!
Please pull your jeans on and join in the fun!
The money raised provides vital care and support for thousands of children living with genetic disorders, and the Smith-Magenis Syndrome Foundation UK.
Please bring a £2 donation (or more!) for your school or workplace’s collection box. If you’d like to find out more about how to enrol your school or workplace, and how your support helps, please visit the Jeans for Genes Day website:
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 … [Read More...] about Mum speaks of son’s genetic disorder for Jeans for Genes Day
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 … [Read More...] about The Marlborough family of Lily Stevenson have been chosen to front a campaign for national charity Jeans for Genes
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 … [Read More...] about Video star Riley helps make people aware of syndrome
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 … [Read More...] about The Story Behind the New SMS Foundation Logo
Sponsor My Smile is a campaign for the SMS Foundation UK. It’s aim is to raise funds and awareness of SMS through a positive social media campaign that allows everyone to celebrate and share our smiles. Individuals with SMS are often known for their big, bright, loving, happy personalities and a smile that is simply infectious!
– Provide information – we have a variety of literature available on the website or in booklet form
– Direct any questions you have to the professionals
– Provide emotional support – on the phone or in person
– Provide information for interested parties about SMS
– Organise and promote social get-togethers
– Small grants can be provided
– Fund research projects
Text DONATE SMSC17 £2/£5/£10 to 70070. Or you can make an online donation to our MyDonate page.
MAKE A DONATION
The Foundation was first started as a support group in 1992 by Julie Jowitt, known then as the SMS Contact Group. With the help of Contact-A-Family the group developed from an initial set of 6 families by writing to doctors all over the world who then sent information and referred families on to Julie.
BCM Smith-Magenis Syndrome Foundation
Tel: 0300 101 0034
Please note: This is an answerphone service that will alert us as soon as a message is left. A trustee will call you back as soon as possible – we aim to respond to messages within 24 hours.
Registered UK Charity 1072573
Registered Scottish Charity SC044841