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Smith-Magenis Syndrome Foundation UK logo

Smith-Magenis Syndrome Foundation UK

Connecting Families, Raising Awareness, Building Futures

  • What is SMS?
    • Overview of SMS
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  • Home
  • About Us
    • Our Vision, Mission and Values
    • How We Help
    • Meet the Trustees
    • Meet the Staff
    • Regional Parent Supporters
    • Our professional board
    • Newsletters
    • Annual Reports
  • SMS Conference 2022
  • News
    • SMS Family Events
    • Activities
    • Conferences
    • Research
    • Blog
  • Get Involved
    • Events
    • Become a Member
    • Ways to Donate
    • Become a Regular Donor
    • Payroll Giving
    • Fundraising Ideas
    • Support My Smile Campaign
  • What is SMS?
    • Overview of SMS?
    • New Diagnosis
    • SMS Behaviours
    • Living with SMS
    • Sleep and SMS
    • Health
    • Facts about Smith-Magenis syndrome
    • Frequently asked questions
    • Find Support for SMS
  • Spotlight on SMS health
    • Vision
    • Sleep
  • Find Support for SMS
    • Small Grant Applications
    • Newlife’s Emergency Equipment Loan Service
    • Emergency hospital documents for download
    • Other Support Organisations
    • Scientific Papers
    • SMS Research
    • Videos
  • Our SMS Community
    • Become a Member
    • Regional Parent Supporters
    • Stories from our SMS Community
  • Contact

We are the SMS Foundation UK, we’re here to support families who have children and adults with SMS.

What is Smith-Magenis Syndrome?

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
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Latest news


Ellen Wotherspoon and her remarkable sporting journey

September 22, 2023

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 …

Read moreEllen Wotherspoon and her remarkable sporting journey

Bridging the Gap: Insights from the SMS Community Survey

September 5, 2023

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 …

Read moreBridging the Gap: Insights from the SMS Community Survey

Louie Martland: Thriving in the World of Hospitality

August 4, 2023

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, …

Read moreLouie Martland: Thriving in the World of Hospitality

Get involved

Latest family and challenge events


SMS Family Meet-up in Lancashire

Saturday 16th July 2022

View detailsSMS Family Meet-up in Lancashire
Marathon runners

Great North Run 2022

Sunday 11th September 2022

View detailsGreat North Run 2022
LLHM 2023

London Landmarks Half Marathon 2023

Sunday 2nd April 2023

View detailsLondon Landmarks Half Marathon 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.

Read Caden’s StoryCaden’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.

Get Involved

Forms and fundraising …

ViewGet Involved

SMS 1711 Circle

Become a Regular Donor

ViewSMS 1711 Circle

Fundraising Ideas

A – Z of Fundraising Ideas

ViewFundraising Ideas

All Events

All fundraising and community …

ViewAll Events

Spotlight on SMS


A series of articles exploring common health symptoms and general wellbeing within Smith-Magenis syndrome.

Introduction to vision in SMS

September 2, 2021

Through the Keele University Internship Programme, Liam joined the SMS Foundation for the summer to …

girl with CVI struggles to get down stairs

Cortical Visual Impairment

July 8, 2021

What is Cortical Visual Impairment (CVI)? Cortical visual impairment (CVI) is a brain-based visual …

Spotlight on Sleep

July 8, 2021

Spotlight on Sleep A family’s life can easily turn into a nightmare when one member has a …

View all Spotlight Articles
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Funders and partners

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Join as a family member and we can connect you with families living near you. You will also receive updates of any social meetings, conferences, and fundraising events going on! Joining is quick and easy!

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View the international map of families diagnosed with SMS

Never feel isolated or alone.
Call our helpline: 0300 101 0034
Other ways to 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.

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The Smith-Magenis Syndrome (SMS) Foundation UK CIO

Connecting Families, Raising Awareness, Building Futures

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Proud finalist of Keele University Breaking the Mould awards
SCA Terrific trustee award 2020
NUE Best Student contribution

Registered UK Charity (CIO) 1186647   ·  Scottish Charity (SCIO) SC050921    

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