Trusts and Foundations serve as integral partners in our mission to cultivate a robust SMS community where everyone receives the essential support they require. These vital collaborators empower us to provide assistance to over 600 individuals living with SMS each year. If you are a charitable trust or foundation and are interested in working with us, we would love to hear from you.
Thank you to the following Trusts and Foundations for supporting us this year:
“I wanted to say that the charity has been hugely helpful since our little one was diagnosed in January. There is some brilliant information on the website and the Mum’s WhatsApp group has been very helpful when wanting to know about other people’s experiences so thank you.”
Feedback from our community survey, from a parent to a child with SMS.
Your Valued Support
At The SMS Foundation, we understand that Trusts and Foundations have unique interests and objectives. We are delighted to collaborate with you to align your charitable goals with our mission of delivering essential services to our community.
Your assistance is instrumental in allowing us to continue our vital work. We are currently seeking funding for specific projects and services, which include:
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.
Projects and initiatives include:
1. Community Wellbeing Service
Our triage-based service aims to implement processes to improve our response rates to incoming enquiries, and enhance emotional and practical support to families dealing with a new SMS diagnosis.
2. Training & Signposting
We will actively promote carer well-being by providing awareness training, mentoring, publishing articles, organising events and webinars, and providing advice.
4. SMS Clinics and Passport
Our aim is to create an SMS passport prototype to communicate personalised needs and care plans, followed by a pilot scheme with recruited volunteers to assess its effectiveness.
Education Support Service
This 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.
Projects and initiatives include:
1. Online Education Resources
We are developing resources such as parent guideline documents to support parents through the EHCP (or alternative) process. Additionally, we are also providing information sharing sessions via webinars and family events.
2. 1:1 EHCP Referral Service
This referral service aims to provide tailored support to families who are facing exclusion or crisis as a result of an inadequate education plan (EHCP).
3. Education Training
Our in-person training course is designed specifically for teachers in a school setting, accompanied by printed course materials for reference. We will also offer ongoing support outreach to ensure teachers have the assistance they need.
Awareness and Advocacy
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.
Other projects and initiatives include:
1. Community Activities and Events
We aim to provide a variety of engaging activities and events to bring the SMS community together. This encompasses a biennial National SMS community event, online thematic activities, and in-person regional community events.
2. Awareness and Policy Campaigns
We will conduct generic awareness and thematic ‘symptom’ campaigns to educate the wider public about SMS. Additionally, we engage in policy campaigning to advocate for legislative changes, to ensure better support.
3. Networks and Research
We aim to strengthen and expand our relationships with other SMS organisations, and Rare Disease Networks to enhance collaboration and support. Additionally, we’re working to establish a solid relationship with our Scientific and Clinical Advisory board.