Lewy Body Dementia Association

Name

Lewy Body Dementia Association

Legal name

Lewy Body Dementia Association, Inc.

Website

https://lbda.org

Company type

Private

Founded year

2003

Operating status

Operating

Headcount range

11–50 employees

Short description

The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit that provides free education, support, and research coordination for the more than 1 million Americans affected by Lewy body dementia and their care partners.

Ownership category

akta.pro rank

Headquarters

HQ city

Lilburn

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D

Revenue model

1. Charitable Donations: LBDA is a 501(c)(3) nonprofit organization that relies on donations from individuals, families, and supporters to fund its mission of optimizing quality of life for those affected by Lewy body dementia through awareness, research, and education.
2. Grants and Foundation Funding: LBDA receives grants from healthcare organizations and foundations to support specific programs. For example, GE HealthCare awarded a grant in 2026 to fund educational programs including webinars, care pilot programs, and resource kits focused on Lewy body dementia awareness, diagnosis, and patient care.
3. Research Funding: LBDA administers research funding programs including the New Investigator Pilot Study Award (up to $50,000), which supports pilot translational or clinical studies in LBD research. This represents both incoming grant funding and outgoing research grant administration.

Pricing tiers

Go-to-market motion3 records

Distribution channels5 records

Marketing channels7 records

Core offering

LBDA is a national 501(c)(3) nonprofit that provides free education, support services, and research coordination for individuals, families, and clinicians affected by Lewy body dementia (LBD). Its core offerings include the Lewy Line telephone support hotline, the Lewy Trial Tracker clinical trial registry, the DIAMOND Lewy Management Toolkit, the Lewy Learning Center on-demand courses, a Community Webinar Series, community conferences, local support groups, and the Research Centers of Excellence network spanning 27 academic medical institutions.

Product overview

LBDA offers a unified portfolio of educational resources, support services, and research coordination for individuals affected by Lewy body dementia. The core offerings include the Lewy Line support hotline, the Lewy Trial Tracker for clinical study participation, the DIAMOND Lewy™ Management Toolkit for symptom management, and the Lewy Learning Center for on-demand education. These are supplemented by the 2026 Community Webinar Series and Conference Series for live educational events, and the Research Centers of Excellence network connecting patients with 27 academic medical institutions. The organization functions as a nonprofit providing free resources rather than a commercial software product.

Differentiator

Problem solved

Functional benefit

Brands

• LBDA Community Webinar Series: A free monthly webinar series providing insights, innovations and practical information for the LBD community.
• Lewy Learning Center
• Lewy Trial Tracker
• DIAMOND Lewy™ Management Toolkit
• The Lewy Line
• LBDA Research Centers of Excellence (RCOE)

Products and services

• Lewy Line Toll-free telephone support line (800-539-9767) providing compassionate listening, emotional support, customized referrals to LBDA programs and support groups, and help identifying education and community resources for individuals with LBD, care partners, and families.
• Community Webinar Series Free monthly webinar series providing strategies for self-advocacy, exploration of complex LBD symptoms, and skills and resources to enhance quality of life for individuals with LBD, care partners, and clinicians.
• Community Conference Series Free in-person community conference series providing expert insights, practical resources, and meaningful connection for individuals, families, and clinicians in the LBD community, held in cities nationwide.
• Lewy Trial Tracker Online registry serving as an ongoing single source of information on LBD-related clinical trials and studies, highlighting study topics, procedures, locations, and contact information for participation.
• DIAMOND Lewy™ Management Toolkit Comprehensive toolkit providing an overview of managing complex symptoms of Lewy body dementia including sleep, cognition, psychiatric symptoms, autonomic features, and motor symptoms, distributed freely by LBDA.
• Lewy Learning Center Free on-demand learning platform offering courses on LBD topics available to watch at any time with unlimited viewing, covering content for individuals, care partners, and healthcare professionals.
• Comprehensive LBD Symptoms Checklist Downloadable patient checklist to help individuals identify and track LBD symptoms, designed for completion in advance of doctor visits or distribution by healthcare professionals.
• LBD Medical Alert Wallet Card Easy-to-carry wallet card designed to quickly inform emergency room medical professionals of important medication sensitivities specific to LBD patients.
• LBDA Research Centers of Excellence (RCOE) Collaborative clinical research network of 27 academic research centers at major universities throughout the U.S., providing advanced LBD diagnosis and treatment and establishing a clinical trials-ready network.
• EL-PFDD Meeting on Dementia with Lewy Bodies Externally-Led Patient-Focused Drug Development meeting on dementia with Lewy bodies convened to capture patient and caregiver perspectives for the FDA and drug developers, resulting in a Voice of the Patient Report.
• New Investigator Pilot Study Award Research grant program providing pilot funding of up to $50,000 per award to support translational or clinical studies that develop preliminary data for future grant applications in LBD research.

Quantifiable outcome

• Over 1 million Americans affected by LBD served through education and support programs
• +2 more outcomes

Named customers4 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Five partnerships are on record, tiered core and minor.

• Alzheimer's AssociationcoreStrategic or Co-development Partner · 1 October 2024LBDA collaborated with the Alzheimer's Association to host the first-ever Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on dementia with Lewy bodies in October 2024. This landmark event gave the FDA, drug developers, and stakeholders direct insight from people living with DLB and their care partners, with the resulting Voice of the Patient Report to guide future treatment development.
• MedscapeminorGTM or Marketing Partner · 1 January 2024LBDA partners with Medscape to provide educational content and resources to healthcare professionals.
• Stanford UniversitycoreStrategic or Co-development PartnerStanford University serves as the Coordinating Center for LBDA's Research Centers of Excellence (RCOE) program starting in 2025. Located at the Stanford Department of Neurology & Neurological Sciences, the center includes Behavioral Neurologists, Movement Disorders Physicians, and other specialists working to advance LBD research and clinical care.
• Mayo CliniccoreStrategic or Co-development PartnerMayo Clinic is an LBDA Research Center of Excellence with locations in Rochester, MN and Jacksonville, FL. Mayo Clinic's Department of Neurology includes over 80 neurologists and is a key site for LBD clinical trials and research.
• 26 Additional Academic Medical CenterscoreStrategic or Co-development PartnerLBDA partners with 26 additional leading academic medical institutions as Research Centers of Excellence, including Johns Hopkins, Columbia, Emory, University of Pennsylvania, University of Michigan, UCLA, UCSD, and others, forming a nationwide clinical and research network for LBD.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Association for Frontotemporal Degeneration (AFTD): Smaller national nonprofit focused on frontotemporal degeneration, another under-recognized dementia. Highly comparable in scale, mission (awareness, education, research) and target audience (patients, caregivers, clinicians), making it a close structural peer for LBDA.
• Michael J. Fox Foundation for Parkinson's Research: Patient-driven Parkinson's research funder with a high-leverage model of issuing and managing investigator grants (similar to LBDA's New Investigator Pilot Study Award). Highly relevant comparator for LBDA's research-grant administration and academic-network coordination role in LBD.
• American Brain Foundation: Nonprofit funding research across the spectrum of brain diseases and providing public education. Comparable to LBDA in bridging neuroscience research funding and patient/caregiver-facing awareness, though with broader disease scope.
• ALS Association: National nonprofit supporting patients with amyotrophic lateral sclerosis through research, care services, and advocacy. Comparable operating model — care services, research grants, clinic network, and public policy advocacy — for a different but adjacent fatal neurodegenerative disease.
• Parkinson's Foundation: National nonprofit supporting patients and families affected by Parkinson's disease, which overlaps biologically with Lewy body dementia. Operates a comparable model — research funding, Centers of Excellence network, helpline, and educational programming — for an adjacent neurodegenerative community.
• CurePSP: Nonprofit supporting patients with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD), atypical parkinsonian syndromes that overlap clinically with Lewy body dementia. Comparable model of rare neurodegenerative disease awareness, education, and research funding.
• BrightFocus Foundation: Nonprofit that funds research and disseminates public education on Alzheimer's, macular degeneration, and glaucoma. Comparable as a disease-specific research funder and producer of patient/caregiver-facing educational content in the dementia space.
• Huntington's Disease Society of America: National nonprofit delivering research funding, family services, support groups, and Centers of Excellence for Huntington's disease. Mirrors LBDA's operating model of combining research investment, clinical care network, and direct family support for a hereditary neurodegenerative condition.
• National Multiple Sclerosis Society: Large national nonprofit funding MS research and delivering education, support groups, and a helpline for patients and families. Operates a structurally similar model to LBDA across research grants, support infrastructure, and professional education in a neurodegenerative disease area.

Broad incumbents

• Alzheimer's Association: Largest US dementia-focused nonprofit with substantially greater funding, brand reach, and research footprint. Co-hosted LBDA's 2024 EL-PFDD on DLB, illustrating direct overlap on LBD advocacy and the threat of broader dementia organizations expanding into Lewy body work.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/LBDAssoc
• Facebookfacebook.com/LewyBodyDementia
• LinkedInlinkedin.com/company/lewybodydementiaassociation

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

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Frequently asked questions about Lewy Body Dementia Association