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.
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!
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.
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.
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.
Stories from the SMS community
SMS family face continued distress due to Covid-19 restrictions in care home
Five top tips to help maintain wellbeing during lockdown
Bright Stars Shining a Light – A Video about living with SMS
Sunlight & Nightshade – A Video About SMS Behaviours
Sweet Dreams & Survival – A Video about SMS Sleep
That Defining Moment – A Video about Diagnosis
Harry’s Story
This is the story of the Donohue family as they sought to keep their four-year-old son, Harry, and …
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.