I love somebody with Smith-Magenis Syndrome.

19/07/2025

RIP Shadai S.

Thinking of your family at this sad time.

The SMS community has lost a very special young lady.

18/07/2025

Just a few days left to apply for our London Marathon place.

The SMS Foundation UK have a charity place available in the TCS London Marathon 2026, taking place on Sunday 26 April 2026.

Starting in Greenwich, the route passes iconic landmarks including Tower Bridge and Canary Wharf before the finish line on The Mall, with a view of Buckingham Palace.

If you are interested in running this iconic event to raise funds and awareness for the SMS Foundation UK, please complete the application form here - https://forms.office.com/e/T6UJC5Lx4C - and let us know your motivations for joining Team SMS in this amazing challenge!

Please note
You must be at least 18 years old to run the London Marathon, and we ask the successful applicant to commit to a fundraising pledge of £3000.
If you have any questions, please email the Fundraising team on fundraising@smith-magenis.co.uk. We look forward to your applications!

03/07/2025

📢 SMS Family Activity Day – Save the Date!
Join us for a fantastic day of connection, fun, and outdoor adventure at Lockerbie Manor Outdoor Activity Centre on Saturday 20th September 2025.

💚 Meet other SMS families from across the UK
🌿 Outdoor activities for individuals with SMS and their siblings
☕ Time for parents and carers to connect and chat
🗣️ Hear the latest updates from the SMS Foundation UK

Tickets just £30 per person – Individuals with SMS go free!
Price includes all activities, lunch, refreshments, and full site access.

Everyone welcome – we’d love to see you there!

👉 Book your place now: https://smith-magenis.org/lockerbie-event-scotland/

23/06/2025

Smith-Magenis syndrome is believed to affect about one in 25,000 people worldwide. Read more at straitstimes.com. Read more at straitstimes.com.

09/05/2025

08/05/2025

UK families

Bookings Now Open – SMS Outdoor Activity Day! 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! Find out more and book here 👉 https://smith-magenis.org/sms-family-activity-day-2025/

Bookings Now Open – SMS Outdoor Activity Day! 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! Find out more and book here 👉 https://smith-magenis.org/sms-family-activity-day-2025/

03/05/2025

Max our superstar 🥰

15/04/2025

📣 We’re planning our 2025 SMS Family Fun Day in the beautiful New Forest and we’d love to know if your family would be interested in joining us! 🌲

It’ll be a day full of outdoor activities, connection, and fun — with camping options available and plenty for everyone to enjoy.

👉 Let us know your interest and preferred month by filling out our quick survey here: https://us12.list-manage.com/survey?u=512649f1860b539523b3959fc&id=1a5eaa1f27&attribution=false

04/04/2025

Dedicated to the memory of Charlie Lewis