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

Newsletter Summer 2021

July 23, 2021

This is a special edition newsletter reporting on the success of the online Teddy Bears’ Picnic, earlier this year.

The SMS Stay Awake Challenge is back!

June 4, 2021

Join Team SMS on Saturday 19 and Sunday 20 June 2021 to take part in our SMS Stay Awake Challenge! As part of our SMS Fulfilling Futures Appeal, we are asking our SMS community, friends, …

Fulfilling Futures – We need your help

May 20, 2021

Supporting families for nearly 30 years Since 1992, the SMS Foundation UK has helped over 300 families who have been diagnosed with SMS. During COVID-19, demand for our services increased more than …

London Landmarks Half-Marathon 2022

Fulfilling Futures

Fundraising Campaign

During COVID-19, demand for our services increased more than ever, and we provided over 265 hours of support and advice, an increase of 167%, and hosted 236 virtual support sessions.

View details

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.