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.

Please Donate Today

Fulfilling Futures Campaign

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 Mission and Values

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

About Us

How we help

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

Newly Diagnosed

Learn more about Smith-Magenis syndrome

Latest news

Does your SMSer get the support they need in their education setting?

June 22, 2022

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

June 10, 2022

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 …

Alex Jowitt Award 2022

May 25, 2022

The Alex Jowitt Award is to recognise member contributions to raising awareness of Smith-Magenis Syndrome and the Smith-Magenis Syndrome (SMS) Foundation UK. Our nominations and winners for 2022 …

SMS Family Meet-up in Lancashire

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London Landmarks Half Marathon 2023

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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.

Read Caden’s Story

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.