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!
The General Data Protection Regulations, which are a government law, are changing on 25th May 2018 and we have got to make sure that any information that we … [Read More...] about Don’t get cut off
Saturday 5th May 2018 Conkers - Award winning attraction at the heart of the National Forest We are delighted to announce that we will be holding our AGM at … [Read More...] about SMS Foundation 2018 AGM and Members Event
It's World Smith-Magenis Syndrome Awareness Day, and the SMS Foundation UK are also celebrating our 25th anniversary - DOUBLE CELEBRATION! Across the UK the … [Read More...] about World SMS Awareness Day and our 25th Anniversary
Week 5, and last but by no means least, the final film in our series! Bright Stars Shining a Light is a video about living with someone with Smith-Magenis … [Read More...] about Bright Stars Shining a Light – A Video about living with SMS
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