Connecting Families, Raising Awareness, Building Futures
Help us support a fulfilling future for everyone living with Smith-Magenis syndrome
We want to bring more families together, provide education and awareness training, and sponsor research into SMS. But we can’t do it without your help.
We are the Smith-Magenis Syndrome (SMS) Foundation UK, and we 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
A Carer’s Journey with Smith-Magenis Syndrome
As part of Carers Week (10th – 16th June), we share the story of Laurie Grainger and her family. Laurie and her husband, Des, have dedicated their lives to caring for their youngest son, Jude, …
Mount Cook Weekend – Schedule of Activities
We are pleased to share the outline schedule for our weekend away at the Mount Cook Activity Centre this August! As you will see, we have a wonderful blend of activities and information-sharing …
Supporting Undiagnosed Children’s Day
Earlier this week, we posted a brief survey on our Facebook page, posing the question, “What age was your child/adult when they received their diagnosis of Smith-Magenis syndrome (SMS)?” …
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.
How You Can Support Us
Whether you are running a marathon, organising a fundraising event, or want to become a regular …
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 …
Managing SMS Sleep
A family’s life can easily turn into a nightmare when one member has a severely disrupted …
Funders and Partners
