We are the SMS Foundation UK, we’re here to support families who have children and adults with SMS.
Our vision
Every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community.
Our services and how we help
- Provide emotional and practical support – virtually or in-person
- Organise, promote, and help towards funding of SMS community get-togethers
- Connect families locally through our Regional Parent Supporters (RePS) Programme
- Conferences
- Small grant scheme to benefit and improve the quality of life of a person with SMS
- Provide information through printed and digital literature, and our website hub
- Direct any complex questions you have to the professionals
- Promote, fund, and collaborate in SMS research projects
- Provide information for interested parties about SMS, and raise awareness
Never feel isolated or alone. Call our helpline: 0300 101 0034, or Contact us
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.
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 through to profound learning disability
- severely disrupted sleep pattern
- delayed speech and language skills
- distinctive facial features
- behaviours that challenge like self-harm, aggression, impulsivity, and hyperactivity
Latest news
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 …
We’ve been shortlisted for an Award!
We are delighted to announce that we have been shortlisted for the Keele University ‘Breaking the Mould’ award in the cultivating talent category! As a Board of Trustees, for the past 10 …
Transitions Community Chat (online)
Wednesday 14th September at 11 am and 7 pm Do you have a child starting primary school, or perhaps an adult about to leave school? Transitions are a scary place for parents and carers of people with …
Get involved
Latest family and challenge events
SMS Family Meet-up in Lancashire
Saturday 16th July 2022
London Landmarks Half Marathon 2023
Sunday 2nd April 2023
Caden’s Story
Nine-year-old Caden, based in Clackmannanshire, was facing potential months of limited exercise at the start of the UK lockdown in March.
We speak to his mother, Stacy, on how the wellbeing of the entire family improved thanks to the donation of a tricycle via the Smith-Magenis Syndrome Foundation.
Ways to support the SMS Foundation
Whether you are running a marathon, organising a fundraising event, or want to become a regular giver we have a selection of ideas and resources to help get you going.
Featured products from our shop
Spotlight on SMS
A series of articles exploring common health symptoms and general wellbeing within Smith-Magenis syndrome.
Introduction to vision in SMS
Through the Keele University Internship Programme, Liam joined the SMS Foundation for the summer to …
Cortical Visual Impairment
What is Cortical Visual Impairment (CVI)? Cortical visual impairment (CVI) is a brain-based visual …
Spotlight on Sleep
Spotlight on Sleep A family’s life can easily turn into a nightmare when one member has a …
Funders and partners
