We are The SMS Foundation UK, a small charity that supports families living with Smith-Magenis syndrome (SMS)
Bookings Now Open!
SMS Outdoor Activity Day – 26th July 2025
We’re excited to open bookings for our fun-filled SMS Outdoor Activity Day at Avon Tyrrell! Join us for a day of adventure including canoeing, zip wire, tree top walk, archery, raft building, low ropes, bushcraft, and pedalo rides – all designed for individuals with SMS and their siblings (aged 5+).
Places are limited, so don’t miss out – book your places now!
Project Springboard
We’re pleased to share an update on our collaborative project with Cambridge University, which aims to better understand the health and well-being of people with SMS using anonymised NHS healthcare data.
Meet our inspiring group of individuals with SMS achieving remarkable things!
Our 5-year Strategy for a Positive Future
We are dedicated to providing support to address the challenges encountered by caregivers of individuals with Smith-Magenis syndrome.
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
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.
Popular Articles from our Information and Support Hub
Ways to Support Us
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
