Smith-Magenis Syndrome (SMS) is a rare genetic condition that occurs one in every 15-25,000 births. People with SMS have complex needs and behaviours, along with a learning disability that can range from mild to profound. It is a lifelong condition that will always need extra support.
What we do
We are The SMS Foundation, a small charity that supports families living with SMS in the UK.
As well as helping families that live with the syndrome we also work with and support a variety of professionals who treat, educate, and care for people with SMS. We help and support families and professionals in a variety of ways, including:
Activities and Events
Information & Literature
Emotional Support & Advice
Support for Newly Diagnosed
Professional Advice & Networks
Support research into SMS
Provide small grants
Our 5-year Strategy for a Positive Future
We recently conducted a community survey to understand the challenges faced by families living with SMS. The survey revealed some eye-opening results, including the following statistics:
70%
SMS families suffer regular isolation and loneliness
83%
Have sought emotional support from The SMS Foundation
46%
Face negative financial impact due to living with SMS
46%
Had to give up their job to care for a person with SMS
29%
Were denied respite support from their local authority
69%
Found accessing education moderately challenging
In response to these findings, we have developed a five-year strategy aimed at addressing these challenges.
Our four priorities include:
Supporting Carers
Providing caregivers with the empowerment and confidence to care for and support a person with SMS.
Supporting Education
Ensuring parents and schools have appropriate support to improve outcomes of SMS pupils in education.
Training Provision
Delivering training so that caregivers and professionals know how to manage and support a person with SMS.
Awareness & Advocacy
Bringing everyone in our SMS family together to benefit from shared experiences, and preventing isolation.
Download and view the full documents in PDF format here:
Information and Support
Our aim is to provide all caregivers and professionals with the knowledge and understanding to feel empowered and confident to support a person with SMS.
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Meet our inspiring group of individuals with SMS achieving remarkable things!
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Share your journey and connect with other SMS families
The SMS International map was created by Salli Hunt and is a list of individuals who have been diagnosed with SMS across the world. The map is not affiliated with any of the official SMS organisations and is an independent piece of work that was established to help families find others living near them. Over 950 individuals with SMS across the world are now listed, if you would like to add a person with SMS please click the button below.
Our Partners and Supporters
