The Lewy Body Society

Quick Stats

• Annual Giving: £336,000 (charitable activities expenditure)
• Grant Range: £80,000 - £200,000 per project
• Decision Time: ~6 months from application deadline
• Typical Funding Pot: £500,000 per grant round
• Number of Grants: 3-5 projects per round
• Geographic Focus: UK only (grants tenable at UK institutions)

Contact Details

Website: www.lewybody.org

Email: lewybody.grants@gmail.com

General Inquiries: info@lewybody.org

Phone: 01942 914000

Overview

The Lewy Body Society, founded in 2006 by Ashley Bayston (charity number 1114579 in England and Wales, SC047044 in Scotland), is the only UK charity focused solely on Lewy body dementia. As a member of the Association of Medical Research Charities, the Society has funded £3.4 million in research over 19 years, supporting groundbreaking projects at top UK universities since 2007. With annual income of approximately £893,000, the charity receives no government funding and relies entirely on voluntary donations, legacies, and earned income from supporters directly affected by the condition. The organisation operates with minimal overhead costs—maintaining no central office and a lean staff structure—to maximise funding available for research. Recent funding rounds have grown significantly, with the most recent round awarding almost £600,000 to four projects, the largest in the charity's history.

Funding Priorities

Grant Programmes

The Society runs periodic grant rounds (typically every 1-2 years) with applications submitted via online application form available on their website. Recent rounds:

• Recent Grant Round: £594,626 awarded to 4 projects
• University of Cambridge: £203,166 (proteomics research)
• University of Dundee: £141,839 (DNA damage as disease driver)
• University College London: £167,346 (cerebral small vessel disease contribution)
• Queen's University Belfast: £82,275 (diagnostic criteria validation)

• Previous Grant Round: £464,000 awarded to 4 projects at Cambridge, Southampton, Queen's Belfast, and Newcastle

Grant Types Funded:

• PhD studentships
• Junior Fellowships
• Innovative awards
• Project grants

Maximum Duration: 3 years

Typical Funding Pot: Approximately £500,000 per round, aiming to fund 3-5 projects

Priority Areas

The Society welcomes applications for projects that:

• Increase understanding of Lewy body dementia
• Improve diagnosis and earlier detection (biomarker development, imaging techniques)
• Advance treatment options
• Improve care for people living with Lewy body dementia and their families/carers
• Address fundamental disease mechanisms (protein biology, immune system involvement, genetics)

Recent funded priorities reflect focus on:

• Diagnostic differentiation from other dementias
• Scanning and imaging techniques
• Disease mechanisms at molecular level
• Clinical validation of diagnostic criteria

What They Don't Fund

• Research not directly relevant to dementia with Lewy bodies
• Grants at non-UK institutions
• Projects where principal investigators lack employment contracts extending beyond the grant period
• Research that does not align with their research strategy

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Governance and Leadership

Chair of Trustees: Ashley Bayston (Founder)

Ashley founded the Society in 2006 whilst caring for her mother with Lewy body dementia. A former barrister, she was shocked by the lack of available information and began contacting experts herself. On Robin Williams's death raising awareness: "It's just a shame that someone who brought such joy to people had to die for this to happen.“ Bayston has stated their five-year goal is ”to raise the degree of name recognition of Lewy body disease to that of Alzheimer's."

CEO: Jacqueline Cannon (since 2010)

Cannon transitioned from secretary-treasurer volunteer to full-time CEO. She emphasises that “Most of our funding comes from people directly affected by Lewy body dementia, through fundraising events, funeral donations and buying Christmas cards and badges.” On research impact, she states research must “have real-life application and to make a difference to people living with dementia.”

Patron: Robert Rinder MBE

Judge Rinder joined as patron in February 2025 after his father's experience with the disease.

Other Trustees:

• Dr. Lynne Corner
• Carol Bewick
• Dr. Liz Bewley
• Sandra McDonald (former Public Guardian for Scotland)

Specialist Advisory Committee: 15 UK-based expert reviewers assess all grant applications, with additional input from international experts. Key members include:

• Prof. Paul Francis (Professor of Neurochemistry)
• Rachel Thompson (Consultant Admiral Nurse)
• Dr. Jay Amin (Associate Professor in Psychiatry)
• Dr. Paul Donaghy (Intermediate Clinical Fellow)

No trustees receive remuneration from the charity.

How to Apply to The Lewy Body Society

How to Apply

Applications are submitted through online application forms available when grant rounds are open. The Society announces calls for applications via their website (www.lewybody.org/research/apply-for-a-grant/).

Eligibility Requirements:

• Grants tenable only at UK host institutions
• Principal applicants or co-applicants from the same institution must hold employment contracts extending beyond the grant period
• Research must be relevant to dementia with Lewy bodies

Application Process:

• Applications submitted online via downloadable form
• Review website for detailed guidance before applying
• Contact lewybody.grants@gmail.com for inquiries

Decision Timeline

Based on recent grant rounds:

• Application Period: Typically 2-3 months
• Application Deadline to Decision: ~6 months
• Example timing: Applications typically close in April with decisions communicated by end of October

Review Process

The Society follows peer review guidelines set by the Association of Medical Research Charities:

1. Applications reviewed by 15-member Specialist Advisory Committee
2. Independent expert reviewers from UK and internationally assess applications
3. Committee ensures objective funding decisions compliant with research strategy
4. Final decisions made by trustees based on committee recommendations

Success Rates

Specific success rates are not publicly disclosed. However:

• Typical round receives funding pot of £500,000
• Aims to fund 3-5 projects per round
• Grant sizes range from £80,000 to £200,000+
• Recent rounds: 4 projects funded totalling £464,000 and £594,626 respectively

Reapplication Policy

The Society's reapplication policy for unsuccessful applicants is not publicly documented. Contact lewybody.grants@gmail.com for specific guidance.

Application Success Factors

Based on funded projects and organisational priorities:

Alignment with Mission: All funded research directly addresses Lewy body dementia specifically—not general dementia research. Projects that clearly differentiate LBD from Alzheimer's or Parkinson's are particularly relevant.

Practical Impact: CEO Jacqueline Cannon emphasises research must have “real-life application and to make a difference to people living with dementia.” Successful projects demonstrate clear pathways to improved diagnosis, treatment, or care.

Patient and Carer Involvement: The Society coordinates 'The Imagine Series,' a patient and carer involvement programme that puts “carer experience, needs and priorities at the heart of research.” Applications demonstrating meaningful patient/carer engagement are valued.

Research Quality and Innovation: As an AMRC member, the Society maintains rigorous peer review standards. Successful applications demonstrate methodological excellence and innovative approaches to pressing research questions.

Early Career Researchers: The Society explicitly funds Junior Fellowships and PhD studentships, recognising the challenge of “attracting early-career researchers” to the field. Early career researchers with strong supervisory support are encouraged to apply.

Recent Funded Topics (as examples):

• Proteomics to differentiate DLB from Alzheimer's (Cambridge, £203,166)
• DNA damage as disease driver (Dundee, £141,839)
• Cerebral small vessel disease contribution (UCL, £167,346)
• Validation of diagnostic criteria (Queen's Belfast, £82,275)

Institutional Support: Principal investigators must have employment contracts extending beyond grant duration, demonstrating institutional commitment to the research.

Funder Values: Founded by someone with personal caregiving experience, the charity maintains deep connection to affected families. Research that acknowledges and addresses the needs of both patients and caregivers resonates with their mission.

Key Takeaways for Grant Writers

• Specificity is critical: This funder only supports Lewy body dementia research, not general dementia work. Applications must clearly focus on LBD.

• Demonstrate real-world impact: The CEO explicitly states research must have “real-life application.” Show clear pathways from research findings to improved diagnosis, treatment, or care delivery.

• Small funding pot means fierce competition: With £500,000 typically funding 3-5 projects, success rates are likely low. Applications must be exceptionally strong and clearly aligned.

• Patient involvement strengthens applications: The Society runs dedicated patient/carer involvement programmes. Meaningful engagement with affected communities enhances applications.

• Early career researchers are welcome: The Society explicitly funds PhD students and Junior Fellows, recognising the importance of building the research workforce.

• Six-month decision timeline: Plan research start dates accordingly—applications typically close in April with decisions in October.

• Peer review is rigorous: As an AMRC member with 15 UK experts plus international reviewers, expect thorough scientific scrutiny at the highest standards.

• Contact before applying: With lewybody.grants@gmail.com available for inquiries, unclear applicants should seek guidance before investing time in applications.

Similar Funders

These funders have a similar focus and geographic reach:

• Alzheimer's Research Uk
• Uk Dementia Research Institute
• The Cure Parkinson's Trust
• The Galen And Hilary Weston Foundation
• Brace
• Dementia Research Uk
• The Robert Mcalpine Foundation
• British Society For Research On Ageing
• Race Against Dementia
• The Frances And Augustus Newman Foundation

References

• The Lewy Body Society official website: https://www.lewybody.org/
• Apply For A Grant page: https://www.lewybody.org/research/apply-for-a-grant/
• Charity Commission register: https://register-of-charities.charitycommission.gov.uk/charity-details/?regid=1114579
• “Lewy Body Society awards record amount in research grants”: https://www.lewybody.org/lewy-body-society-600000-dementia-research-grants/
• “Press release: A million pound effort to tackle Lewy body dementia”: https://www.lewybody.org/press-release-a-million-pound-effort-to-tackle-lewy-body-dementia/
• Meet The Team: https://www.lewybody.org/about-us/meet-the-team/
• Grant Round 2022: https://www.lewybody.org/grant-round-2022/
• Our History: https://www.lewybody.org/about-us/our-history/
• Queen's University Belfast news: "Charity's largest ever funding pot awarded to universities to study Lewy body dementia" https://www.qub.ac.uk/News/Allnews/2022/charity-largest-funding-awarded-universities-lewy-body-dementia.html
• Nature article: “From data to dialogue in setting research priorities for Lewy body dementia”: https://www.nature.com/articles/s44400-025-00019-x