Smith-Magenis Syndrome Foundation UK
Connecting Families, Raising Awareness, Building Futures
Latest information on SMS, and related research.
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 adults with rare genetic syndromes over their lifetime. Parents and caregivers of children and adults with Smith-Magenis Syndrome will be asked to take part in …
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 – between the GP, hospital, and back again. Sometimes this seems like an impossible goal. We want to help you through this process. …
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 with Smith-Magenis Syndrome? It has been suggested that individuals with Smith-Magenis Syndrome can be overly affectionate towards other people. Natasha Craven, MSc …
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 startling results. 56% of our children start in mainstream education, however after three years this falls to 15% and by the start of …
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 are currently living and what, if any, options were provided. The research gathered will help us build a base of evidence …
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 year: Emily Allen – Genetics & Medical Management, and Physical Health Jesica Antwi – Diet and Obesity …
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 identify what the problems are, and how we can work towards successful outcomes for young people with SMS. The survey …
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 project aims to gain a better understanding of the predicaments faced by families and professionals around sleep in SMS. The outcome expected …
This survey is being conducted by the Smith-Magenis Syndrome (SMS) Foundation UK with the purpose of improving our understanding of COVID-19 in people with Smith-Magenis Syndrome across the world. After collating the results and appropriate consultation with our scientific and clinical advisers, we intend to publish a summary of our findings. This is a piece …
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 population with Smith-Magenis syndrome. Incident rate is estimated at 1 in 15-25,000, which would suggest up to 4,500 people in the UK have SMS. Our membership database has identified …
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 decision was based on uncertainty that this medicine would offer value for money to NHS Scotland. The wider implication is that the SMC are saying …
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 could capture the sleep experiences of every SMS family, or as many as possible, then we would have a significant body …
