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 individuals with SMS and the families who care for them. SMS is a complex genetic disorder that presents unique challenges, impacting both physical and cognitive development. Our mission is clear: to improve the quality of life of everyone living with SMS through awareness, understanding, and a supportive community.
What We Do
Our work revolves around supporting families and professionals in various ways:
- Activities and Events: We organise inclusive events and activities to support the social lives of people living with SMS, benefiting their emotional and mental well-being.
- Information and Literature: We provide online resources and educational materials for caregivers, professionals, and anyone seeking knowledge about SMS.
- Emotional Support and Advice: Through our advocacy initiatives, we offer professional advice and guidance, providing a holistic understanding of SMS healthcare needs.
- Support for Newly Diagnosed: We respond to incoming enquiries and provide signposting to Regional Parent Supporters (RePS), specialist support, and equipment providers for those who need it.
- Professional Advice and Networks: We work with professionals who have the knowledge and skills necessary to provide guidance and advice about individuals with SMS.
- Support Research into SMS: We actively engage in research projects and networks to advance our understanding of SMS and improve care standards.
- Provide Small Grants: Through advocacy and small grant initiatives, we aim to make a positive impact on the lives of those living with SMS.
Our Vision: The Five-Year Strategy
In early 2023, we took a significant step forward by conducting a survey among caregivers of the SMS community, which provided valuable insights into their needs and challenges. These insights have served as the cornerstone of our five-year strategy, which focuses on the following key initiatives:
- Prioritising Community Needs
- Knowledge Enhancement
- Building Collaborative Networks
- Strengthening Our Team
- Growing Our Supporter Base
- Ensuring Sustainability
- Enhancing Engagement and Branding
Our Core Programs
To achieve these strategic goals, we have established four core programmes:
1. Carer Support Service
At the heart of our strategy lies our Carer Support Service, dedicated to fostering a stronger and more empowered community of caregivers. This programme aims to alleviate isolation, expedite responses to enquiries, provide access to specialist support, and enhance the overall well-being of caregivers.
2. Education Support Service
Our Education Support Service seeks to improve educational outcomes for individuals with SMS by facilitating smoother transitions, reducing distress in classrooms, and providing enhanced guidance and support for educational settings.
3. Training Programme
The Training Programme empowers caregivers and professionals with the knowledge and skills to better care for individuals with SMS, ensuring they receive the best possible support and treatments.
4. Awareness and Advocacy Programme
This program unites families living with SMS, reduces isolation, increases awareness, and advocates for the needs of our community.
Adaptability and Accountability
As a small charity, we understand the importance of adaptability. We have developed a flexible schedule of programme delivery, prioritised based on our resources and growth ambitions. Our adaptability allows us to navigate challenges and seize opportunities while remaining accountable to our stakeholders.
Our five-year development strategy reflects our unwavering commitment to improving the lives of individuals with SMS and their families. Together with our community, supporters, and dedicated team, we will continue to provide hope and support for those living with SMS, making a lasting impact on their journey towards a better quality of life.