The Awareness and Advocacy Programme 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.
Our ultimate goal is to inspire an increased number of families to join our cause, collaborate with The SMS Foundation, and together, make a profound impact on the lives of those living with SMS.
Programme Outcomes
- Inclusive events and activities positively support the social lives of people living with SMS, benefitting their emotional and mental well-being.
- Professional advice and guidance provides a holistic understanding of SMS healthcare needs, empowering caregivers to seek the correct treatments and therapies.
- Increased awareness of complex challenges faced by families living with SMS brings wider understanding, tolerance, acceptance, and improves care standards.
- Time and money are saved by sharing information and patient groups and networks benefit from a stronger voice from working together.
Awareness and Advocacy Programme – Theory of Change Model
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 community activities for broader participation, and in-person regional community events to foster local connections and support.
Key Outputs
- National (biennial) and regional (annual) in-person activities and events
- Online thematic community activities and events
Estimated Project Cost | Expected Delivery Timeline |
---|---|
£27,700.00 | August 2024 |
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 and opportunities for individuals with SMS.
Key Outputs
- Generic SMS awareness and thematic ‘symptom’ campaigns via online and printed media.
- Policy campaigning for positive change and challenges to Government legislation.
Estimated Project Cost | Expected Delivery Timeline |
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£36,240.00 | Over 5 Years |
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 to benefit from their expertise. We will continue to facilitate research initiatives by hosting 1-2 students per year to conduct research projects.
Key Outputs
- Strengthen and grow relationships with other SMS organisations, rare disease networks, and similar patient groups.
- Build and support relationships with the Scientific and Clinical Advisory Board.
- Annually host students to conduct research projects.
Estimated Project Cost | Expected Delivery Timeline |
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£9,360.00 | Over 5 Years |
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, fostering valuable interactions and information exchange.
Key Outputs
- Pilot an SMS consultation clinic aimed to bring parents together with professionals interested in SMS.
- Exploration of pharmacogenetics within SMS clinics.
Estimated Project Cost | Expected Delivery Timeline |
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£15,300.00 | 2025 – 2027 |
We anticipate a total programme cost of £88,600.00 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.
How You Can Support Our Work