Now more than ever, we need your help!
COVID-19 has decimated our income and has left us unable to expand our services to meet the demand from SMS families.
We need your help today to allow us to support families tomorrow and the next day to enhance our services to support fulfilling futures for all those living with SMS.
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
Spotlight on Sleep
Watch our stop-motion ‘Safe Sleeping with Smith-Magenis Syndrome’ film about a teddy bear who wakes up through the night and gets into all sorts of mischief!
What are the typical sleep patterns of a person with Smith-Magenis syndrome, and why do they have difficulty sleeping? As parents and caregivers, we want to help our children and adults who have Smith-Magenis syndrome to lead healthy lives. But how do you keep them safe and navigate the challenges of living with disrupted sleep?
We explore these questions and share the experiences of some parents living with Smith-Magenis syndrome. We also have a range of strategies, practical support, and resources to help you and your family manage life with someone who has a severely disrupted sleep.
How we help
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
Mini Jointed SMS Bear
Reusable Face Mask
SMS Sports Bottle
Understanding Smith-Magenis Syndrome
Broadly focusing on the diagnosis and early planning aspects of Smith-Magenis syndrome.
The SMS Personality, managing behaviours and developing skills.
Understanding the sleep patterns of SMS and learning to manage and cope.
Living with SMS, finding support and building futures.