What is 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
Understanding Smith-Magenis Syndrome
That Defining Moment
Diagnosis If you are viewing this website as the caregiver of a child or adult newly diagnosed with SMS you may be experiencing lots of different emotions, some of which…
Sunlight and Nightshade
SMS Personality People with SMS are often described as very friendly and outgoing, and as finding social attention particularly rewarding. Many develop strong social relationships at home, school/college and in…
Sweet Dreams and Survival
Sleep Matters Sleep problems are highly characteristic of people with SMS, more so than of other people with an intellectual disability (where sleep problems are also elevated). There is now…
Bright Stars Shining a Light
Living with SMS Smith-Magenis Syndrome is a complex disability. Each individual will exhibit different aspects of the characteristics and so each family with develop their own ‘coping’ strategies. It is…
Our Supporters and Partners
Latest News
Smith-Magenis Syndrome Foundation UK – EGM Notice
The Trustees of the Smith-Magenis Syndrome (SMS) Foundation UK are calling an Extraordinary / Special General Meeting (EGM) for 10:30 am Saturday 16 November, at the Aldingbourne Country Centre in…
Our 2020 Vision
Every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community. Our mission is that the Smith-Magenis Syndrome (SMS) Foundation UK shall be at the…
Melatonin Application Rejected by SMC
The Scottish Medicines Consortium (SMC) has rejected the application to recommend prolonged-release melatonin (Slenyto®) as a treatment for insomnia in children with autism spectrum disorder and/or Smith-Magenis syndrome (SMS). The…
Outline Conference Schedule
We are pleased to publish our outline schedule for the 2019 conference. Further details of the speakers and their presentations will be available leading up to the conference. Outline Schedule…
Sleep Safely – Your Help Needed!
The SMS UK Foundation has commissioned a project to understand the requirements for sleeping safely and the potential solutions for this to happen. We need the help of our global…
Dates for 2019 Conference Announced
The 2019 SMS Foundation UK Conference Friday 3rd May – Monday 6th May Following the successes of our 2015 and 2017 conferences, we shall be returning to the familiar surroundings…
Team of SMS Dads Complete 3 Peaks Challenge
On 23rd August, a group of 19 Dads that have children with Smith-Magenis syndrome completed the epic ‘3 Peaks Challenge’ to raise money and awareness for SMS. The event involved…
Our Vision, Mission and Aims
The SMS Foundation have been busy planning for a sustainable future with a development strategy looking at our vision, aims and goals for the next 1, 3, 5 and 10…
Don’t get cut off
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 have about…
SMS Foundation 2018 AGM and Members Event
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 Conkers…
World SMS Awareness Day and our 25th Anniversary
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 SMS Foundation have been encouraging and…
Bright Stars Shining a Light – A Video about living with SMS
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 syndrome,…
Bright Stars Shining a Light – A Video about living with SMSRead More
Become a Member
If you join as a member you will receive updates of any social meetings, conferences and fundraising events that are going on! Joining is quick, easy and free!
SMS Conference 2019
Friday 3rd May – Monday 6th May
Following the successes of our 2015 and 2017 conferences, we shall be returning to the familiar surroundings of The St John’s Hotel in Solihull. Please fill in the online registration form on our conference website to register your place.
Check out our video filmed at the 2017 SMS conference to find out more about what happens and what to expect at one of our conferences.
How We Help
– 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
Share My Smile
Individuals with SMS are often known for their big, bright, loving, happy personalities and a smile that is simply infectious! All donations will help the SMS Foundation UK achieve our aim of supporting families living with SMS, so whether it is a ‘fiver for fangs’ a ‘tenner for no teeth’ or a ‘fifty for falsies’ please share your beautiful, cheesy, gappy, gurning smiles and make the World smile along with you!