SMS community survey results
What our community told us Earlier this year, The SMS Foundation UK invited families and carers in our community to share their experiences of living with Smith-Magenis syndrome (SMS), the challenges …
Research
Latest information on SMS, and related research.
Introducing SMS Springboard: A Research Project on the Health and Well-being of People with SMS
The SMS Foundation and the University of Cambridge are delighted to announce a new research initiative: SMS Springboard. This ambitious project will analyse existing healthcare data to gain insights …
Scientific Papers
The latest information from SMS Foundation UK is stored here and continually updated as we produce additional information. Living with SMS This information was collated with SMS by experts in …
Bridging the Gap: Insights from the SMS Community Survey
In the pursuit of a more inclusive and supportive future for individuals and families living with SMS, we recently conducted a community survey. Our objective was to gain a deeper understanding of the …
Launch of ‘Beond’ a new project with our partners at the Cerebra Network
We’re delighted to announce the launch of ‘Beond’ a new pioneering study with our partners at the Cerebra Network. The Beond project aims to understand the behaviours of children and …
Research Study into Medical and Behaviour Management
We want every individual with SMS to have coordinated care! For all our SMS families, care is never about a single visit to a single service. Good care seamlessly moves between services – …
Affection! Study Participants Needed
It’s something we always say is an endearing quality in SMS, but there is virtually nothing in research to support what we know. What are the affectionate behaviours exhibited by children and adults …
Does your SMSer get the support they need in their education setting?
Please share your EHCP/CSPs with us. We want to draw out provisions and good practice to help every individual with SMS prosper in their education. Our recent survey on education produced some …
Research into Residential Options for Adults with SMS
We kick off our first summer 2022 intern project with Susan Over, who is exploring residential living options for adults with SMS. The survey (see link below) aims to discover where adults with SMS …
Introducing six new intern placements for 2022
We would like to welcome 6 new interns for the summer of 2022. They will be taking on a range of topics hoping to cover some of the key themes our community has been enquiring about over the past …
Education Survey for Primary Carers in the UK
The SMS Foundation is trying to build an accurate picture of education provision across the UK. We need this information to help us understand some of the issues that families face. This will help us …
Caregivers’ experience of sleep management in SMS: research study published on Orphanet Journal of Rare Diseases
We are delighted to announce that the first of two research articles for the Safe Sleeping project, commissioned by the SMS Foundation, has been published by the Orphanet Journal of Rare Diseases. The …
UK Demographics Study
The aim of this study is to provide a definitive demographic profile of syndrome diagnosis across the UK. This is to assist the charity in: Establishing the actual diagnosed …
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 …
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 SMS families. If we …