We are a small charity that supports families living with SMS in the UK. As well as helping families that live with the syndrome we also work with and support a variety of professionals who treat, educate, and care for people with SMS. We help and support families and professionals in a variety of ways, including:
Activities and Events
Information & Literature
Emotional Support & Advice
Support for Newly Diagnosed
Professional Advice & Networks
Support research into SMS
Provide small grants
Impact and Achievements 2022 – 2023
- Responded to 153 enquiries from parents and caregivers, an 82% increase compared to the previous year.
- Our three volunteers collectively spent an average of 60 hours per month addressing incoming enquiries.
- Strengthened our membership and online presence by 10% in the past year.
- Steady growth in website traffic and social media platforms. Facebook community grew to 2.7k followers with a 120% increase in reach over 12 months.
- Delivered awareness and training presentations to four schools to help educators understand and accommodate the unique needs of students with SMS.
- Successfully completed a comprehensive community survey with responses from over 100 families living with SMS.
- Developed a 5-year strategy based on community feedback to address pressing needs.
- Completed a rebranding effort, including a new logo, strapline, and updated vision, mission, and values.
- Hosted nine interns in collaboration with institutions like Keele University, Aston University, and The University of St Andrews (ScotGEM).
- Collaborated with another rare disease charity to share knowledge and experience.
Helping families through small grants and advocacy
Our 5-year Strategy for a Positive Future
In early 2023, we took the initiative to conduct a survey among the caregivers of our SMS community to gather direct feedback on the issues and challenges they are facing. Over 100 people took part in the survey, and the insights we gathered have been key to understanding what their needs are and developing a strategy that effectively addresses them. The survey revealed some eye-opening results, including the following statistics:
In response to these findings, we have developed a five-year strategy aimed at addressing these challenges, focussing 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
Impact and Purpose Theory of Change
Our purpose is to improve the quality of life of everyone living with SMS through awareness, understanding, and a supportive community. We aim to achieve this by ensuring that every person with SMS is surrounded by caregivers and professionals who are well-equipped and empowered to meet their unique needs.
Our Four Core Programmes
Carer Support Service
The Carer Support Service is an integral component of our five-year development strategy, embodying the very essence of our collective vision and aspirations. At the heart of this programme lies our commitment to fostering a stronger and more empowered community of caregivers.
Education Support Service
Our Education Support Service is a core programme designed to improve educational outcomes for individuals with SMS. Our goal is to ensure positive educational outcomes, increased opportunities for future work or placements in adulthood, and the development of person-centered educational plans for SMS pupils.
Training Programme
Our programme is dedicated to fostering increased confidence among caregivers and professionals, equipping them to provide the highest quality care and support to those living with SMS. We understand the unique challenges that come with caring for individuals with SMS and recognise the pivotal role caregivers and professionals play in their well-being.
Awareness & Advocacy Programme
This is an initiative driven by a deep commitment to unite and support families living with SMS. Our work is dedicated to reducing the feelings of isolation and loneliness that can often accompany this journey by building a supportive and compassionate network of individuals who truly comprehend the experiences of SMS families.
Programme and Project Delivery
Our charity is proud to be small and agile. Over the next five years, we have developed a flexible schedule of programme delivery that is prioritised based on our current finances, resources, and ambitions for growth.
Programme Budgets
Our adaptability allows us to prioritise and execute programmes and services while being mindful of our financial constraints. We are dedicated to making the most out of our resources, ensuring that funds are utilised in a way that positively impacts our beneficiaries and creates meaningful change in our community.
As a small charity, we understand that adaptability is crucial in the dynamic landscape of the third sector. There may be occasions where external factors or unforeseen circumstances require us to adjust our timelines for project delivery.
We are committed to being responsive and flexible in such situations, as our ultimate goal is to ensure the successful implementation of our projects and services for the benefit of our community. We believe that being adaptable allows us to effectively navigate challenges and seize opportunities that arise along the way, while staying true to our mission and values. Our focus remains on delivering meaningful impact while remaining accountable to our stakeholders.
How You Can Support Our Work
