Diagnosis If you are viewing this website as the caregiver of a child or adult newly diagnosed with SMS you may be … READ MORE... about That Defining Moment
Supporting Families who have Children and Adults with 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 to moderate learning disability
– severely disrupted sleep pattern
– delayed speech and language skills
– distinctive facial features
– behaviours that challenge like self-harm, aggression, impulsivity and hyperactivity
LEARN MORE ABOUT SMS
The Smith-Magenis Syndrome Foundation is a small UK registered charity that supports families who have children of all ages with SMS and provides information for professionals working with these families.
If you join as a member you will receive a membership pack with useful literature, updates of any social meetings, conferences and fundraising events that are going on! Joining is quick, easy and free!
Week 4 and we are delighted to release the fourth film in our series. Sunlight & Nightshade is a video about some of the behaviours associated with … [Read More...] about Sunlight & Nightshade – A Video About SMS Behaviours
Week 3 and we are delighted to release the third film in our series. Sweet Dreams & Survival is a video about the sleep difficulties associated with … [Read More...] about Sweet Dreams & Survival – A Video about SMS Sleep
In the lead up to the international SMS awareness day (17th November), each week during October, the SMS Foundation UK are releasing a short film about living … [Read More...] about That Defining Moment – A Video about Diagnosis
We would like to say a huge "Thank You" to all those that helped to support last weeks Jeans for Genes Day and the Smith-Magenis Syndrome Foundation. The day … [Read More...] about A huge “Thank You” to our Jeans for Genes fundraisers
Sponsor My Smile is a campaign for the SMS Foundation UK. It’s aim is to raise funds and awareness of SMS through a positive social media campaign that allows everyone to celebrate and share our smiles. Individuals with SMS are often known for their big, bright, loving, happy personalities and a smile that is simply infectious!
– Provide information – we have a variety of literature available on the website or in booklet form
– Direct any questions you have to the professionals
– Provide emotional support – on the phone or in person
– Provide information for interested parties about SMS
– Organise and promote social get-togethers
– Small grants can be provided
– Fund research projects
Text DONATE SMSC17 £2/£5/£10 to 70070. Or you can make an online donation to our MyDonate page.
MAKE A DONATION
The Foundation was first started as a support group in 1992 by Julie Jowitt, known then as the SMS Contact Group. With the help of Contact-A-Family the group developed from an initial set of 6 families by writing to doctors all over the world who then sent information and referred families on to Julie.
BCM Smith-Magenis Syndrome Foundation
Tel: 0300 101 0034
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.
Registered UK Charity 1072573
Registered Scottish Charity SC044841