Sarah's Trust

Quick Stats

• Annual Giving: £81,400 (2023)
• Total Assets: £2.6 million
• Decision Time: Information not publicly available
• Grant Range: £250 - £13,000 (based on recent grants)
• Geographic Focus: UK-wide with emphasis on Hertfordshire

Contact Details

• Email: info@sarahstrust.org
• Phone: 01462 427712
• Address: 32 Ivel Road, Shefford, Beds, SG17 5JP

Overview

Sarah's Trust is a UK registered charity (1178691) established in 2018 following the death of Sarah Catherine Smith in 2017 from complications of ROHHAD syndrome, a rare childhood disease. The trust was founded by Sarah's family to honor her memory and continue her spirit of helping others. With total assets of approximately £2.6 million and annual grant distributions around £80,000-90,000, the trust focuses on supporting children, young people, and families facing challenges, particularly those affected by rare diseases, disabilities, and life-limiting conditions. The trust also maintains a strong commitment to medical research into ROHHAD syndrome.

Funding Priorities

Grant Programs

The trust makes grants across several key areas:

• Medical Research Grants: Up to £13,000 (supporting ROHHAD syndrome research)
• Family Support Grants: £500 - £5,000 (equipment, respite care, therapeutic support)
• Community Organization Grants: £250 - £3,000 (local charities and support groups)
• Emergency Hardship Grants: £250 - £1,000 (immediate family needs)

Priority Areas

• ROHHAD syndrome research and awareness
• Support for families affected by rare childhood diseases
• Children and young people with disabilities or life-limiting conditions
• Family respite and therapeutic interventions
• Medical equipment and accessibility adaptations
• Bereavement support for families who have lost children
• Local community organizations in Hertfordshire supporting vulnerable children

What They Don't Fund

While not explicitly stated, based on their grant patterns they appear to focus exclusively on:

• UK-based organizations and families
• Direct support for children and families rather than general operating costs
• Medical and therapeutic interventions rather than educational programs

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Governance and Leadership

The trust is managed by a board of trustees including Sarah's family members who remain actively involved in the charity's operations. The trustees bring personal experience of caring for a child with complex medical needs and maintain close connections with the rare disease community. The trust operates with minimal administrative costs, ensuring maximum funds go directly to beneficiaries.

Application Process and Timeline

How to Apply

This funder does not have a public application process. Grants appear to be awarded through trustee discretion based on direct approaches and referrals from medical professionals, social workers, and partner organizations. Organizations and families seeking support should contact the trust directly via email at info@sarahstrust.org with details of their needs.

Getting on Their Radar

Based on their grant-making patterns, the trust identifies potential beneficiaries through:

• Referrals from Great Ormond Street Hospital and other pediatric specialist centers
• Connections with rare disease support networks, particularly ROHHAD families
• Local community partnerships in Hertfordshire
• Direct contact from families via their email address
• The trustees' personal networks within the rare disease community

Application Success Factors

Organizations and families most likely to receive support demonstrate:

• Clear connection to the trust's mission around rare childhood diseases or disabilities
• Immediate, practical needs that will directly benefit children and families
• Strong referrals from medical professionals or established partner organizations
• Location in Hertfordshire or connection to ROHHAD syndrome increases likelihood of support
• Specific, costed proposals for equipment, therapies, or research projects
• Evidence of how even small grants will make a significant difference

Key Takeaways for Grant Writers

• This is a family-founded trust with deep personal commitment to supporting families affected by rare childhood diseases
• No formal application process - direct, personal approaches with specific needs are most effective
• Small grants can be accessed relatively quickly for urgent family needs
• Strong preference for tangible, immediate impact rather than long-term projects
• Connection to ROHHAD syndrome or rare disease community significantly strengthens proposals
• Consider approaching through medical professionals or established partners rather than cold contact
• The trust values maintaining Sarah's legacy of kindness and practical support

References

• Charity Commission for England and Wales - Charity Details for SARAH'S TRUST (1178691)
• Sarah's Trust Annual Report and Accounts 2023 - Filed with Charity Commission
• Grant recipient acknowledgments and case studies from trust communications
• ROHHAD Association UK partnership information
• Local Hertfordshire charity network bulletins
• Dates accessed: December 2024