Cystic Fibrosis Trust

Charity Number: 1079049

Annual Expenditure: £15.1M
Throughout England And Wales, Scotland, Northern Ireland

Contact Info

Website: www.cysticfibrosis.org.uk

Phone: 020 3795 1555

Email: enquiries@cysticfibrosis.org.uk

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Quick Stats

  • Annual Giving: £4.7 million (research grants)
  • Total Income: £14.7 million (2022-23)
  • Decision Time: Varies by programme (peer review process)
  • Grant Range: £2,500 - £750,000 (depending on programme)
  • Geographic Focus: UK-based, with international research partnerships
  • Founded: 1964

Contact Details

Website: www.cysticfibrosis.org.uk

Phone: 020 3795 1555

Email: enquiries@cysticfibrosis.org.uk

Research Enquiries: Research Awards team - strongly encouraged to contact before applying

Helpline: 0300 373 1000 (for welfare grants)

Helpline Email: helpline@cysticfibrosis.org.uk

Overview

The Cystic Fibrosis Trust is the UK's only national charity dedicated to fighting for a life unlimited by cystic fibrosis. Founded in 1964, the Trust is the largest charity funder of cystic fibrosis research in the UK. In the 2022-23 financial year, the Trust had a total income of £14.7 million and total expenditure of £12.8 million, with £4.7 million invested in CF research. The organization operates with a clear vision: “a life unlimited by their condition for everyone with CF,” working towards three ambitious goals—that everyone with cystic fibrosis is physically well, mentally well, and fulfilled. Recent strategic initiatives include a groundbreaking £15 million partnership with LifeArc to create a Translational Innovation Hub Network (2024-2029) and over £2 million pledged to address research priorities identified directly by people with CF through the James Lind Alliance process.

Funding Priorities

Research Grant Programmes

Strategic Research Centres (SRCs): £750,000 maximum

Three to four year grants supporting virtual centres of excellence bringing together researchers from within and outside CF to address specific issues. Since 2013, the Trust has funded 25 SRCs involving over 140 scientists from over 50 cities and 15 countries. Applications open annually with rigorous peer review process.

Venture and Innovation Awards (VIAs): Variable amounts

Designed to support transformational and innovative research by leveraging funding from external sources. For every £1 spent by the Trust, an additional £4 has been leveraged from external agencies. Since 2013, over 90 grants awarded across diverse research areas.

Development Awards (DAs): Up to £20,000 for equipment

Two types available—one for Early Career Researchers and one for Established Investigators. Supports preparatory work for future funding applications including preliminary data generation, strengthening collaborations, and developing partnerships. Can cover salaries (post-doc, PhD students, technicians only), research consumables, equipment (up to £20k), and travel (up to £1,000 per year).

Clinical Fellowships: Co-funded with MRC and NIHR

The Trust has co-funding agreements with Medical Research Council and NIHR to fund clinical fellowships.

Summer Studentships: £2,500 total

For promising medical and basic science undergraduates. Provides £2,400 stipend plus £100 for consumables for 8-week summer research projects. Includes expenses for attending and presenting at the UK Cystic Fibrosis Conference.

Innovation Hub Network: £15 million (2024-2029)

Partnership with LifeArc supporting four Innovation Hubs at Universities of Cambridge, Liverpool, Manchester, and Imperial College London, focusing on lung health and infection diagnostics, treatments, and devices.

Welfare Grant Programmes

Emergency Grants: £150

For people with CF facing immediate financial need, prioritizing low-income households.

Winter Support Fund: Variable amounts

In the last financial year, 324 grants totaling over £70,000 were provided to help with food, heating, and household items during colder months.

Transplant Grants: Variable

Support costs associated with transplant assessment and procedures.

Additional Welfare Grants: Variable amounts

  • Prescription prepayment certificate grants (one-off for 12-month certificate)
  • Household appliance grants (for health-essential items like fridges for medication storage)
  • Joseph Levy Education Fund (for further/higher education expenses)
  • Activity Boost grants (gym membership, activity classes, personal training with physiotherapist agreement)

Priority Areas

Research funding must address the Trust's research strategy and align with:

  • James Lind Alliance CF Research Priorities: Refreshed top 10 priorities identified by the CF community in 2022, including treatment burden simplification, GI symptom relief, and early lung disease prevention
  • SCORE objectives: Applications must demonstrate relevance to these objectives
  • Patient-identified priorities: Research that addresses questions raised by people with CF, their families, and care teams
  • Later-stage clinical programmes: Should reference JLA refreshed CF research priorities
  • Early-stage programmes: Balanced portfolio approach to innovative and translational research

Key focus areas from recent awards include:

  • Novel therapies for rare CFTR mutations not benefiting from current modulators
  • Reproductive and maternal health (pregnancy, childbirth, breastfeeding)
  • Lung infection detection, diagnosis, treatment, and management
  • Alternatives to current treatments as the CF population ages
  • Machine learning for predicting pulmonary exacerbations
  • Phage therapy for antibiotic-resistant infections

What They Don't Fund

While not explicitly stated in available materials, research applications should align with CF-specific priorities and the Trust's strategic objectives. For welfare grants, priority is given to those on low incomes and most affected by their condition.

Governance and Leadership

Chief Executive: David Ramsden (appointed December 2016)

Previously served as Chief Executive of BBC Children in Need for 10 years, with over 20 years' experience in the charity sector including work with the British Red Cross.

Key Quote from CEO: “I am inspired by the way people with cystic fibrosis face challenges head-on, with remarkable resilience and good humour.”

On the cost of living crisis, Ramsden stated: “People with Cystic Fibrosis have made it clear to us that their cost of living is a crisis that is happening right now, with 1 in 3 people missing hospital appointments due to cost and 1 in 3 running out of food before they have money to buy more.”

Chair of Trustees: Richard (appointed July 2018)

Previously Chair of the London Ambulance Service (2009-2016), executive coach running leadership development programmes.

Research Grant Review Committee (RGRC): Group of CF clinicians, researchers, and people from the CF community who review applications and recommend funding following rigorous external peer review.

Application Process & Timeline

How to Apply - Research Grants

Strongly Recommended: Contact the Research Awards team before applying. This is emphasized repeatedly for Development Awards and other schemes.

Application Method: Online portal with specific guidance notes for each programme

Review Process: Rigorous external peer review system followed by RGRC consideration

Rolling vs Fixed: Annual funding calls for major programmes (SRCs, Summer Studentships)

Key Requirements:

  • Applications must demonstrate relevance to research strategy and SCORE objectives
  • Clinical studies must reference JLA refreshed CF research priorities
  • AI tool usage (e.g., ChatGPT) must be acknowledged if used in proposal development
  • Balanced portfolio consideration—both early-stage and later-stage clinical programmes

How to Apply - Welfare Grants

Application Method: Contact Helpline on 0300 373 1000 or email helpline@cysticfibrosis.org.uk

Process: Applications reviewed with priority for low-income households and those most affected by their condition

Decision Timeline

Specific timelines vary by programme but all research applications undergo:

  1. Rigorous external peer review
  2. RGRC review and recommendation
  3. Final funding decision

Funding calls for major programmes (e.g., SRCs, Summer Studentships) typically open annually. Contact the Research Awards team for specific timeline information.

Success Rates

Success rate data is not publicly available. However, the Trust reports:

  • Since 2013: 25 SRCs funded (involving 140+ scientists)
  • Since 2013: 90+ Venture and Innovation Awards granted
  • Recent commitment: Over £2 million for four new grants addressing patient priorities
  • 324 Winter Support Fund grants awarded in last financial year

Reapplication Policy

Strategic Research Centres and Development Awards:

  • If unsuccessful in previous funding round, cannot reapply for the immediate next funding round
  • New applications may be considered if differing significantly from original proposal
  • Must contact Research Awards Team before submitting a completely new proposal to discuss eligibility

This policy applies to both Established Investigator Development Awards and SRC applications.

Application Success Factors

Direct Guidance from the Trust

Pre-Application Contact is Critical: The Trust strongly encourages applicants to contact the Research Awards team ahead of applying. This guidance is emphasized multiple times across different funding schemes.

Alignment with Patient Priorities: Applications must demonstrate clear relevance to priorities identified by people with CF through the James Lind Alliance process. The Trust actively seeks research that addresses questions raised by the CF community.

SCORE Objectives: Research funding applications must address relevance to the Trust's research strategy and meet SCORE objectives for funding—this is a stated requirement.

Language and Terminology

The Trust uses patient-centered language:

  • “Life unlimited” (vision statement)
  • “Physically well, mentally well, and fulfilled” (three goals)
  • Strong emphasis on “people with CF” (person-first language)
  • Focus on “transformational,” “innovative,” and “translational” research

Recent Funded Projects as Examples

2024 Strategic Research Centres:

  • Novel suppressor drugs for CFTR mutations (Dr Mike Gray, Newcastle) - for those with rare mutations not benefiting from modulators
  • MATRIARCH programme (Dr Imogen Felton, Prof Jane Davies, Royal Brompton/Imperial) - maternal, infant, reproductive and child health in CF

Innovation Hub Network (2024-2029):

  • Cambridge: Machine learning to predict pulmonary exacerbations
  • Imperial: Novel pathogen detection including breath analysis and sniffer dogs
  • Liverpool: Phage therapy for antibiotic-resistant infections

Evidence of Partnership Approach

The Trust values:

  • International collaboration: SRCs have involved researchers from 15 countries
  • Leveraged funding: VIAs generate £4 for every £1 from the Trust
  • Co-funding partnerships: Agreements with MRC, NIHR, and LifeArc (£15m programme)
  • Cross-disciplinary work: Bringing together researchers from within and outside CF field

Standing Out

  1. Demonstrate patient impact: Show how research addresses JLA priorities or other patient-identified needs
  2. Evidence innovation: VIAs require transformational/innovative approaches, leveraging potential
  3. Build partnerships: International, cross-disciplinary, or institutional collaborations strengthen applications
  4. Contact early: Pre-application discussion with Research Awards team is strongly encouraged
  5. Show preparedness: Development Awards should demonstrate clear pathway to future major funding
  6. Acknowledge AI use: If generative AI tools assisted in proposal development, this must be acknowledged

Key Takeaways for Grant Writers

  1. Pre-application engagement is essential: Contact the Research Awards team before submitting—this is emphasized repeatedly and indicates it's expected for strong applications.
  1. Patient priorities are paramount: Your research must clearly align with James Lind Alliance refreshed priorities or other patient-identified needs. The Trust invests in what matters most to people with CF.
  1. Know the reapplication rules: Cannot resubmit in immediate next round if unsuccessful unless proposal differs significantly—contact Research Awards team first to discuss.
  1. Leverage your partnerships: The Trust values applications that bring in external funding (4:1 ratio for VIAs), involve international collaboration, and cross disciplinary boundaries.
  1. Match your application to the right programme: The Trust offers a ladder of funding from £2,500 Summer Studentships through Development Awards to £750,000 SRCs—choose the programme that fits your career stage and project scope.
  1. Demonstrate translational potential: With major investment in Innovation Hubs focused on diagnostics, treatments, and devices, show how your research could translate to clinical benefit.
  1. Use person-centered language: Frame your work around how it will help people with CF be “physically well, mentally well, and fulfilled” rather than just scientific outcomes.

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References