Cure Eb (formerly Known As Sohana Research Fund)

Quick Stats

• Annual Giving: £1,481,770 (2023 charitable expenditure)
• Annual Income: £730,965 (2023)
• Decision Time: Reviewed three times per year
• Grant Range: Not publicly specified - varies by project
• Geographic Focus: International (UK, US, Europe)

Contact Details

Website: www.cure-eb.org

Email: contact@cure-eb.org

Phone: 020 3405 8433

Research Enquiries: research@cure-eb.org

Overview

CURE EB (formerly known as Sohana Research Fund) was founded in 2014 by Sharmila and James Collins, parents of Sohana who was born with a severe form of Epidermolysis Bullosa (EB). The charity is dedicated to finding effective treatments and a cure for EB, a rare, incurable, progressive, and painful genetic skin condition causing internal and external blisters. With 7 trustees and 15 volunteers, CURE EB operates on the principle that 100% of donations fund research directly. In 2023, the charity had income of £730,965 and charitable expenditure of £1,481,770, reflecting their commitment to accelerating translational research and clinical trials. The charity's focus is on addressing the critical funding gap for EB research, as this rare condition attracts minimal government funding.

Funding Priorities

Grant Programs

CURE EB reviews applications three times per year on a rolling basis. Applications are welcome from clinicians, clinician-scientists, and researchers worldwide who share the goal of curing EB.

Focus Areas:

• Translational research projects
• Early phase clinical trials
• Treatment of specific EB-related health issues
• New technology development for treating all types of EB

Priority Areas

• Gene therapy and gene editing approaches (e.g., CRISPR, TALEN, base editing)
• Cell therapies and stem cell treatments
• Mesenchymal stromal cell (MSC) infusions
• Recombinant collagen VII development
• Corneal and ocular treatments for EB
• Airway disease therapies for Junctional EB
• Squamous cell carcinoma prevention in RDEB patients
• Innovative delivery methods (nanoneedle bandages, topical applications)

What They Don't Fund

• Basic laboratory research (generally not funded)
• Animal studies (except as part of later-stage research prior to proof of concept clinical trials)
• Projects not demonstrating proximity to clinical proof of concept

Ready to write a winning application for Cure Eb (formerly Known As Sohana Research Fund)?

Our AI helps you craft proposals that match their exact priorities. Save 10+ hours and increase your success rate.

Get Free Beta Access

Governance and Leadership

Trustees

• Sharmila Nikapota (Collins) - Founder and Trustee
• James Collins - Co-founder and Trustee; primary responsibility for financial management, legal, and compliance
• Prof. David Kelsell - Trustee since registration
• Rachel Lesiter - Trustee; financial oversight and record keeping
• Michaël De Lathauwer - Trustee
• Tazim Hall - Trustee
• Duncan Wales - Trustee

No trustees receive remuneration, payments, or benefits from the charity. All senior positions are held by trustees and volunteers, with paid admin and fundraising support staff.

Scientific Advisory Panel (SAP)

The SAP consists of senior researchers and clinicians who volunteer their time and meet quarterly to ensure research funded by CURE EB is scientifically robust and aligned with research strategy.

Staff

• Rachel Lesiter - Operations
• Elizabeth Llewellyn - Administrator
• Amy Strother - Research Officer and Project Manager
• Suzy Powell - Corporate Relations
• Kate Gee - Community Liaison Officer

Application Process and Timeline

How to Apply

1. Initial Submission: Submit a Research Outline for review by the Research Team
2. Internal Triage: Research Team assesses strategic fit
3. SAP Review: Scientific Advisory Panel reviews successful outlines and recommends projects for peer review
4. Peer Review: External experts in EB or relevant technology review applications
5. Applicant Response: Opportunity to respond to peer review comments
6. Final Recommendation: SAP reviews peer reviews and responses
7. Trustee Approval: All funding subject to final approval by Trustees

Decision Timeline

Applications are reviewed three times per year. Specific timelines from submission to decision are not publicly specified.

Eligibility

• Clinicians, clinician-scientists, and researchers worldwide
• Must be from universities, hospitals, or recognised academic institutions
• Track record in EB research or leader status in relevant field is advantageous
• Research institution must endorse/sponsor the project

Success Rates

Not publicly available.

Reapplication Policy

Not specified. Since applications are reviewed three times per year, unsuccessful applicants may potentially apply in subsequent cycles. Contact CURE EB directly for specific guidance.

Application Success Factors

Key Evaluation Criteria

• Proximity to clinical proof of concept - or clearly defined path towards it
• Clinical and scientific importance - significance of the research question
• Innovation - demonstrating potential advantage over other research groups
• Realistic project plan - targets, timings, and staffing requirements must be adequate and achievable
• Collaboration - international and multi-group collaboration is encouraged
• Intellectual property - considerations around IP ownership and licensing

Funding Structure

• Direct costs only
• Small indirect cost allowance for US-based research
• CURE EB encourages publication of results

Recent Funded Projects (Examples)

• Mission EB: Mesenchymal stromal cell infusions in children with RDEB (Great Ormond Street Hospital and Birmingham Children's Hospital) - 30 children treated, showing 27% reduction in itch at 6 months
• NanoCure: Medical grade nanoneedle bandage for topical COL7A1 gene therapy
• ELK-003: Ophthalmic solution for corneal abrasions in EB
• mRNA-based base editing for RDEB
• Bespoke therapy for RDEB: Personalised treatments
• Nova Anchora (NvA-011): Recombinant collagen VII for topical application
• University of Colorado major project with 5-year funding commitment
• Base and prime editing of RDEB fibroblasts (France)
• Gene and cell therapy at University of Minnesota
• Editing of RDEB fibroblasts at King's College London

Strategic Guidance

• CURE EB does not generally fund basic laboratory research - focus on translational potential
• Demonstrate clear path to clinical application
• Consider co-funding opportunities (CURE EB has participated in match-funding with other EB charities and federal grants)
• Early and regular treatment interventions appear most effective based on Mission EB results
• Patient and parent input is valued (evidenced by involvement of patient groups in study design)

Key Takeaways for Grant Writers

• Focus on translation: Proximity to clinical proof of concept is the primary criterion - clearly articulate the path from research to patient benefit
• 100% research funding model: All donations go directly to research, so applications align with donor expectations of direct patient impact
• International scope welcome: Geographic location is not a barrier - strong science and EB expertise matter most
• Collaboration strengthens applications: Multi-group and international partnerships are actively encouraged
• Rolling opportunities: Three review cycles per year provide multiple opportunities to apply
• Start with Research Outline: Initial screening through outline submission allows for early feedback before full application investment
• Peer review dialogue: Opportunity to respond to peer review comments means applications aren't simply rejected - engagement in scientific discourse is valued

References

• CURE EB Official Website - https://cure-eb.org/
• CURE EB Applying for Funding Page - https://cure-eb.org/our-research/applying-for-funding/
• CURE EB About Page - https://cure-eb.org/about-cure-eb/
• CURE EB Scientific Advisory Panel - https://cure-eb.org/our-research/scientific-advisory-panel/
• CURE EB Current Research Projects - https://cure-eb.org/research-portfolio/current-projects/
• CURE EB Mission EB Project - https://cure-eb.org/research-portfolio/mission-eb/
• UK Charity Commission Register - Charity Number 1158672 - https://register-of-charities.charitycommission.gov.uk/charity-details/?regid=1158672&subid=0
• CURE EB 2023 Annual Report and Financial Statements (Year-ended 31 December 2023) - Available via Charity Commission
• Bageta et al. (2025), Mission EB clinical trial results, eClinical Medicine
• The Brothers Trust - CURE EB - https://www.thebrotherstrust.org/cure-eb