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
Ellen Wotherspoon and her remarkable sporting journey
At the SMS Foundation UK, we take immense pride in celebrating individuals who are dedicated to pursuing their aspirations. Ellen Wotherspoon, a 28-year-old from Scotland, has become a shining example …
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 …
Louie Martland: Thriving in the World of Hospitality
Meet Louie Martland, a remarkable 17-year-old from Wigan, Greater Manchester, who has shown incredible determination and resilience in pursuing his passion for customer service and hospitality. Louie, …
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.
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
