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SMS Foundation UK
Supporting SMS families for a positive future
Stories from the heart about life with SMS, from members of our community.
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 …
Disability History Month offers a valuable opportunity to celebrate the stories of individuals, families, and organisations dedicated to supporting those living with disabilities. As our International Awareness Month in November comes to a close, we want to take this moment to share the history of Smith-Magenis Syndrome and the journey of The SMS Foundation UK—from …
Since getting a diagnosis the Cobby family have gone above and beyond to raise awareness for SMS and to raise funds for the SMS Foundation UK. So much of what we do here at the Foundation is about learning from one another to support one another. We asked Lucinda if she was happy to share …
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 …
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, …
As we celebrate National Siblings Day, we also shine a spotlight on the extraordinary bond shared between Katherine and her two sisters, Charlotte and Hannah.
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 …
At just 16 years old, Elizabeth Dudley from Belton in South Yorkshire has proven that determination and an inclusive environment can turn aspirations into reality. This year, she had the opportunity to showcase her incredible spirit by participating in the Armed Forces Day Parade in Cleethorpes, North Lincolnshire. Elizabeth’s involvement in the Belton and Epworth …
At the age of 16, Lily Stevenson has recently completed her school work experience placement at Bliss Hairdressers in Devizes, Wiltshire. This opportunity not only allowed Lily to explore her passion for hairdressing but also provided her with an invaluable boost to her confidence and personal growth. Recognising her passion for hairdressing, Silverwood School played …
On 23rd March 2020, Boris Johnson told the country that people ‘must’ stay at home and certain businesses must close. The impact of this was felt in every corner of society as life ‘as-we-knew-it’ came to an abrupt pause and social interaction with anyone living outside our home was denied. People who were considered ‘clinically …
Maintaining wellbeing – both mental and physical – is incredibly important for children and adults with Smith-Magenis Syndrome, as well as their families around them. Here, we’ve highlighted five top tips to maintain wellbeing and we speak to one family who’ve been able to make the most of exercising while in lockdown. Eating well Keeping …
The final film in our series! Bright Stars Shining a Light is a video about living with someone with Smith-Magenis syndrome, and in this film we asked a number of different families the following questions: What do they like to do for fun? Describe your child in three words What is your child’s favourite TV …
Sunlight & Nightshade is a video about some of the behaviours associated with Smith-Magenis syndrome, and in this film we ask a number of different families the following questions: Can you tell me the best two things about living with or caring for someone with SMS? Can you tell me the two most challenging things …
We are delighted to release the third film in our series. Sweet Dreams & Survival is a video about the sleep difficulties associated with Smith-Magenis syndrome, and in this film we ask a number of different families the following questions: Describe their bedroom or night time routine Do you receive much support for respite in …
In the lead up to the international SMS awareness day (17th November), each week during October, the SMS Foundation UK are releasing a short film about living with Smith-Magenis syndrome. The next short film in our series is titled ‘That Defining Moment’ and broadly focuses on the diagnosis and early planning aspects of Smith-Magenis syndrome. This …
