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 of our webinars.
Webinar 1: Tuesday 25th March 1pm – 2.30pm
Webinar 2: Thursday 27th March , 7pm – 8.30pm
Why SMS Springboard Matters
Living with SMS can involve a range of challenges that affect both physical and mental health. However, there is still much we do not fully understand, such as how these challenges change over time and why individuals with SMS experience different health outcomes.
SMS Springboard will focus on important questions, including:
- How many people have a recorded diagnosis of SMS?
- How does health change as people with SMS get older?
- Why does mental health vary amongst adults with SMS?
We aim to answer these questions by examining healthcare data that is routinely collected when you visit your GP or are admitted to hospital. By exploring these key areas, we hope to improve care and support for individuals with SMS and their families.
A Key Step Towards a Collaborative Centre for Rare Conditions and Mental Health
We hope that SMS Springboard can be the first step towards creating a Centre for Rare Conditions and Mental Health. This centre would bring together experts from different fields and use healthcare data to investigate the biological, psychological, and social factors affecting the well-being of people with many different rare conditions, including SMS.
By demonstrating that it is both possible and valuable to study the health and well-being of people with SMS using existing healthcare data, we aim to show that a dedicated centre of this nature is both feasible and needed. Through such a centre, we hope to:
- Develop shared solutions to address common challenges faced by individuals with rare conditions.
- Use data-based evidence to push for improvements in healthcare policy, services, and support.
Your Voice Matters: Help Shape the Research
We believe that research should be guided by the people it aims to help. That’s why we are inviting SMS families to join our Springboard Launch Webinars. These interactive sessions will give you the chance to:
- Find out more about the aims and methods of SMS Springboard.
- Share your own experiences and identify the healthcare challenges that are most important for us to investigate.
- Help shape our research so it reflects what matters most to the SMS community.
Your input is essential in guiding the direction of SMS Springboard, ensuring we ask the right questions and that our findings lead to meaningful improvements in healthcare and support for individuals with SMS and their families.
Join the Conversation: Springboard Launch Webinars
We will be hosting two Springboard Launch Webinars to engage with and learn from the SMS community.
- Duration: Approximately 1-1.5 hours
- Availability: Daytime and evening
- Hosted by: Millie Wagstaff, Kate Baker, Leeann Stevenson
How to Get Involved
If you would like to take part in our Springboard Launch Webinars, please sign up today.
SMS Foundation & Rareminds Specialist Counselling Service