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
Our Spring 2020 Newsletter
Connecting Families | Raising Awareness | Building Futures Welcome to our Spring 2020 newsletter providing you with the latest information from the Smith-Magenis Syndrome Foundation UK, this edition includes the…
Emergency hospital documents for download
Going into hospital is never an easy time for anyone, but for someone with a learning disability and complex needs, it can be extremely stressful. As the Covid-19 pandemic continues…
The Smith-Magenis Syndrome (SMS) Foundation UK introduces Helen Hargrave as our Fundraising Manager
Having worked in the charity sector since 2010, Helen has spent the past five years in senior management fundraising positions for a variety of charitable causes, incorporating small local charities…
Information and Communications Manager Announced for Smith-Magenis Syndrome (SMS) Foundation UK
The Smith-Magenis Syndrome (SMS) Foundation UK introduces Leeann Stevenson as our Information and Communications Manager. For the past eight years, Leeann has been at the heart of our communications, information…
CEO Announced for The Smith-Magenis Syndrome (SMS) Foundation UK
For over 35 years, Nigel Over has been involved in the running of, or contributing towards numerous charities where he holds a personal interest. His dedication has seen him devote…
CEO Announced for The Smith-Magenis Syndrome (SMS) Foundation UKRead More
Charity Commission approval for CIO
Following the vote by members in favour of converting the Foundation from an unincorporated registered charity to a Charitable Incorporated Organisation (CIO) at our EGM on 16 November 2019, we…
Ciara Harvie becomes Charity Ambassador For SMS Foundation
Sensational Mezzo-Soprano Ciara Harvie becomes charity ambassador for the Smith-Magenis Syndrome (SMS) Foundation UK. June 2016, a Summer Soiree at Donaldson’s in Linlithgow. A celebration of the achievements and future…
Ciara Harvie becomes Charity Ambassador For SMS FoundationRead More
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…
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!
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!