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Smith-Magenis Syndrome Foundation UK logo

Smith-Magenis Syndrome Foundation UK

Connecting Families, Raising Awareness, Building Futures

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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
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  • 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

Our SMS Community

Regional Parent Supporters

With their use of local knowledge and lived experience of SMS, our Regional Parent Supporters are here to provide support and guidance to all our families. They can also connect you with families in your region.

Find your Regional Parent SupporterRegional Parent Supporters
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Become a Member

Join as a member you will receive updates of any social meetings, conferences, and fundraising events that are going on! Joining is quick, easy, and free!

Become a MemberBecome a Member

Never feel isolated or alone. Call us: 0300 101 0034 or email 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.

View the international map of diagnosed families with SMS

Follow us on social media

The SMS Foundation UK has official social media pages on Facebook, Twitter, Instagram, Linked In, and YouTube where we regularly post information about social events, conferences, fundraising activities, and information specific to Smith-Magenis syndrome. You can connect to these channels through the links below.

  • Facebook
  • Twitter
  • Instagram
  • LinkedIn
  • YouTube

Organise a SMS get-together

We provide up to £200 to assist members in organising social events and get-togethers so that they can connect with other families and share experiences.

If you would like to apply for a social event grant, please fill in our social event application form (Word Document) below and email it to info@smith-magenis.co.uk and a trustee will come back to you as soon as possible.

Download Social Grant Form

Stories from the SMS community

Garden visit with Mum and Dad

SMS family face continued distress due to Covid-19 restrictions in care home

On 23rd March 2020, Boris Johnson told the country that people ‘must’ stay at home and certain …
Lily Stevenson on her adapted tricycle

Five top tips to help maintain wellbeing during lockdown

Maintaining wellbeing – both mental and physical – is incredibly important for children and adults …
Bright Stars Shining a Light video cover image

Bright Stars Shining a Light – A Video about living with SMS

The final film in our series! Bright Stars Shining a Light is a video about living with someone with …
Sunlight and Nightshade Video cover

Sunlight & Nightshade – A Video About SMS Behaviours

Sunlight & Nightshade is a video about some of the behaviours associated with Smith-Magenis …
Video cover image for film title Sweet Dreams & Survival

Sweet Dreams & Survival – A Video about SMS Sleep

We are delighted to release the third film in our series. Sweet Dreams & Survival is a video …
Video front cover for film That Defining Moment

That Defining Moment – A Video about Diagnosis

In the lead up to the international SMS awareness day (17th November), each week during …

Harry’s Story

This is the story of the Donohue family as they sought to keep their four-year-old son, Harry, and …

Caden Bond on his tricycle

Caden’s Story

Nine-year-old Caden, based in Clackmannanshire, was facing potential months of limited exercise at …

Do you have a story you would like to share?

Do you have an inspirational story? Are you campaigning, or do you want to raise awareness about an issue you are facing? We love to hear from our community. If you have an experience you can share, please get in touch and we will help tell your story.

Share:

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Join our Community

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!

Join
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.

  • Facebook
  • Twitter
  • LinkedIn
  • Instagram
  • YouTube
  • Mail

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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