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. Learn more…
Project Cost: £18,360.00
2. Online Resources & Signposting
We will actively promote carer well-being by publishing various online articles, resources, and advice. Learn more…
Project Cost: £12,720.00
3. Advocacy, Referrals, and Small Grants
We will streamline support by creating an application process and managed service for advocacy, referrals, and small grants. Learn more…
Project Cost: £20,220.00
4. SMS 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. Learn more…
Project Cost: £17,580.00
We anticipate a total programme cost of £68,880.00 over the next five years.
If you are interested in contributing to our programme or any specific Carer Support Service initiative, please get in touch.
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 will also provide education recommendations for SEND lead workers and teaching staff in schools. Learn more…
Project Cost: £12,900.00
2. 1:1 Referral Service
This referral service aims to provide tailored ‘person-centred’ support to families who are struggling to access an adequate education plan (EHCP) and support within their educational setting. Learn more…
Project Cost: £24,640.00
3. Education Policy Campaign
This long-term initiative will focus on advocating and campaigning for positive changes to education policy. Learn more…
Project Cost: £18,120.00
We anticipate a total programme cost of £55,660.00 over the next five years.
If you are interested in contributing to our programme or any specific Education Support Service initiative, please get in touch.
Training Programme
We are 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.
Projects and initiatives include:
1. Online Training Resources
We provide a range of accessible online training resources, including guides, practical references, and instructional videos to equip parents and carers with valuable knowledge and skills. Learn more…
Project Cost: £9,180.00
2. 1:1 Educational Training Courses
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. Learn more…
Project Cost: £22,810.00
3. Parents and Caregiver Workshops
Other learning options for parents and carers will include group workshop events for immersive learning experiences. Members also have access to workshop videos, printed materials for reference, and valuable insights from real-life case studies and user success stories to enhance their knowledge and skills. Learn more…
Project Cost: £14,500.00
4. Medical Professional Guidance
We will increase awareness among medical professionals through a combination of online and print campaigns. We will also provide guidance information and access to videos ensuring healthcare professionals have the resources they need for enhanced patient care. Learn more…
Project Cost: £15,740.00
We anticipate a total programme cost of £62,230.00 over the next five years.
If you are interested in contributing to our programme or any specific Training Programme initiative, please get in touch.
Awareness and Advocacy Programme
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.
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. Learn more…
Project Cost: £116,956.00
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. Learn more…
Project Cost: £36,240.00
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. Learn more…
Project Cost: £9,360.00
4. Medical Clinics
To enhance our support for the SMS community, we would like to pilot an SMS consultation clinic at national events. Our medical clinics will provide a platform for parents to connect with professionals knowledgeable about SMS. Learn more…
Project Cost: £15,300.00
We anticipate a total programme cost of £177,856.00 over the next five years.
If you are interested in contributing to our programme or any specific Awareness and Advocacy Programme initiative, please get in touch.
Find out more about our work and the impact that we make here.
