Never feel isolated or alone. Call our helpline: 0300 101 0034
Please note: This is an answer phone service – we aim to respond to messages within 24 hours.
SMS Foundation UK
Supporting SMS families for a positive future
Latest News from the SMS Foundation
SMS Family Activity Day – Sat 20th September 2025 Lockerbie Manor Outdoor Activity Centre, Scotland We’re pleased to invite SMS families from across the UK to our next Family Activity Day at Lockerbie Manor Outdoor Activity Centre on Saturday 20th September 2025. This special event is a brilliant opportunity to meet other families living with …
We’re excited to announce that our ballot is now open for a charity place in the TCS London Marathon 2026! This world-famous event takes place on Sunday 26 April 2026 and is an unforgettable experience for any runner. Starting in Greenwich, the route takes you past some of London’s most iconic landmarks – including Tower …
We’re delighted to share that Jeans for Genes has awarded The SMS Foundation UK a very generous grant of £18,640. This funding will make a real difference to our community, helping us develop and expand our support for parents and carers of children and young people with Smith-Magenis syndrome. Thanks to this grant, we can …
What Every Parent and Carer Needs to Know Don’t forget to register for your space to a SEND education webinar hosted by the SMS Foundation UK. The webinar will be taking place next week (details below): 🗓 Thursday 12th June🕖 7:00pm – 8:30pm💻 Online via TEAMS All registered places will automatically receive a link to the recording of this webinar. The …
The SMS Foundation and the University of Cambridge are delighted to announce a new research initiative: SMS Springboard. This ambitious project will analyse existing healthcare data to gain insights into the health and well-being of children and adults with Smith-Magenis Syndrome (SMS). Springboard Launch Webinars Your voice matters, help shape the research by joining one …
The SMS Foundation UK is pleased to announce our new partnership with Rareminds, a specialist counselling service dedicated to supporting individuals and families affected by rare conditions. This collaboration marks a significant milestone in our commitment to enhancing carer support, one of our two key priorities identified through our development strategy. Understanding the Need for …
Date: Wednesday 4th December 2024Time: 19:00 – 20:00 Details A guide to navigating the process and pathways in the development of an Education Health and Care Plan (EHCP) for children and young people requiring additional support. Speaker Annette Benstead, Consultant Send Consultancy Service I have over 20 years experience in the field of Special Educational Needs …
Tuesday 29th October 2024 19:00 – 20:00 We invite you to join us for a webinar covering the topics of Power of Attorney and Deputyship, presented by Kerry Wagner at Irwin Mitchell. Webinar Overview This will provide a brief overview of the Mental Capacity Act 2005 and its general principles, what the Court of Protection …
As part of Carers Week (10th – 16th June), we share the story of Laurie Grainger and her family. Laurie and her husband, Des, have dedicated their lives to caring for their youngest son, Jude, who was diagnosed with Smith-Magenis syndrome (SMS) at the age of 18 months. The Grainger family, including Jude’s siblings Shaleigh …
We are pleased to share the outline schedule for our weekend away at the Mount Cook Activity Centre this August! As you will see, we have a wonderful blend of activities and information-sharing sessions planned for everyone. Information Sessions and Main Hall Access To ensure our weekend runs smoothly, information sessions will be held in …
Earlier this week, we posted a brief survey on our Facebook page, posing the question, “What age was your child/adult when they received their diagnosis of Smith-Magenis syndrome (SMS)?” Our aim was to gather a swift snapshot of data in preparation for an article recognising the importance of Undiagnosed Children’s Day. The response was overwhelming, …
We would like to provide further information about our national event this year at Mount Cook Activity Centre from Friday 16th August through to Sunday 18th August 2024. Living with SMS can present its own set of challenges, and sometimes the greatest support comes from those who are walking a similar path. Our event will …
For over a decade, the SMS Foundation UK has been uniting families living with Smith-Magenis Syndrome (SMS) through its biennial conferences, creating a space for shared journeys and invaluable information. However, after our milestone 30th-anniversary celebration in May 2022, held at Voco St John’s Hotel in Solihull, it became apparent that our beloved event has …
Introducing a Fresh Look for 2023 We are thrilled to unveil our rebranded identity, marking a significant milestone in our journey to better serve our SMS community. Our last brand update in 2017 brought us a refreshed logo and an engaging narrative behind it, which beautifully encapsulated the essence of SMS. Nigel Over’s brilliant storytelling …
At the heart of our small charity is a big vision we are working tirelessly on to support families living with SMS. As we embark on the next chapter of our journey, we are excited to introduce our comprehensive five-year development strategy. Who We Are We are a charity dedicated to enhancing the lives of …
It is with gratitude that we acknowledge the contributions made by Nigel Over during his time as both a trustee and CEO of The SMS Foundation UK. Nigel’s journey with The SMS Foundation began in 2012 when he joined as a trustee with a visionary commitment to the mission of the organisation. His dedicated efforts …
At the SMS Foundation UK, we take immense pride in celebrating individuals who are dedicated to pursuing their aspirations. Ellen Wotherspoon, a 28-year-old from Scotland, has become a shining example of determination, resilience, and outstanding performance within the Scottish Learning Disability Sports (SLDS) community. Ellen’s journey into the world of sports began in 2010 when …
Meet Louie Martland, a remarkable 17-year-old from Wigan, Greater Manchester, who has shown incredible determination and resilience in pursuing his passion for customer service and hospitality. Louie, who is diagnosed with Smith-Magenis syndrome (SMS) began his journey during his school years which has led him to a promising future in the hospitality industry. In year …
In the pursuit of a more inclusive and supportive future for individuals and families living with SMS, we recently conducted a community survey. Our objective was to gain a deeper understanding of the needs, challenges, and experiences of our community members. The results of this survey have unveiled startling statistics that emphasise the importance of …
We are delighted to announce that we have been shortlisted for the Keele University ‘Breaking the Mould’ award in the cultivating talent category! As a Board of Trustees, for the past 10 years, we have cooperated digitally across the whole of the UK. We are fully supportive of each other and pull together to meet …
Wednesday 14th September at 11 am and 7 pm Do you have a child starting primary school, or perhaps an adult about to leave school? Transitions are a scary place for parents and carers of people with special educational needs. We want to understand what the challenges are so we can support SMS families better. …
We kick off our first summer 2022 intern project with Susan Over, who is exploring residential living options for adults with SMS. The survey (see link below) aims to discover where adults with SMS are currently living and what, if any, options were provided. The research gathered will help us build a base of evidence …
The Alex Jowitt Award is to recognise member contributions to raising awareness of Smith-Magenis Syndrome and the Smith-Magenis Syndrome (SMS) Foundation UK. Our nominations and winners for 2022 are: WINNER – Lifetime Commitment Award Clare and Evan Barker Clare and Evan Baker, year in and year out, have been a constant champion for the Smith-Magenis …
We would like to welcome 6 new interns for the summer of 2022. They will be taking on a range of topics hoping to cover some of the key themes our community has been enquiring about over the past year: Emily Allen – Genetics & Medical Management, and Physical Health Jesica Antwi – Diet and Obesity …
