¶ Lewy Body Dementia Association
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| colspan="2" class="infobox-header" | Lewy Body Dementia Association
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| **Founded** | 1990 (as Lewy Body Dementia Association)
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| **Headquarters** | Minneapolis, Minnesota, USA
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| **Type** | Non-profit Patient Advocacy Organization
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| **Focus** | Lewy body dementia, dementia with Lewy bodies, Parkinson's disease dementia
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| **Website** | [lbda.org](https://www.lbda.org)
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The Lewy Body Dementia Association (LBDA) is the leading organization dedicated to raising awareness and providing support for people affected by Lewy body dementia (LBD). LBD is the second most common form of neurodegenerative dementia after Alzheimer's disease, affecting approximately 1.4 million Americans. The organization serves patients, families, caregivers, and healthcare professionals through education, support services, and research advocacy.
- Clinical Research: Supporting clinical trials and studies specific to LBD
- Biomarker Development: Identifying biomarkers for LBD diagnosis and progression
- Caregiver Support: Research into caregiver burden and interventions
- Treatment Optimization: Optimizing pharmacological and non-pharmacological treatments
- Autopsy Program: Brain bank for LBD research
¶ Lewy Body Dementia Research Center of Excellence
A network of specialized clinical centers providing expert diagnosis and care while advancing LBD research. These centers conduct clinical trials, collect biospecimens, and contribute to understanding LBD pathophysiology.
LBDA actively promotes and supports clinical trials specific to LBD, including trials targeting:
- Alpha-synuclein aggregation inhibitors
- Cholinesterase inhibitors
- Novel therapeutic approaches
- REM sleep behavior disorder treatments
- Support groups (online and in-person)
- Educational webinars
- The Lewy Line (information helpline)
- Caregiver stress workshops
LBDA has contributed to numerous recent discoveries:
- DLB Diagnostic Criteria: Updated consensus criteria for dementia with Lewy bodies
- Biomarker Validation: Supported validation of α-synuclein seeding assays for LBD diagnosis
- Autonomic Dysfunction: Research on autonomic failure as an early LBD marker
- Neuroimaging Biomarkers: Support for DaTscan and other imaging biomarkers
| Disease |
Research Priority |
| Dementia with Lewy Bodies |
Primary focus |
| Parkinson's Disease Dementia |
Synuclein pathology |
| Pure Autonomic Failure |
Alpha-synuclein |
| Multiple System Atrophy |
Related synucleinopathies |
¶ Training and Professional Education
LBDA invests in educating healthcare professionals:
- Annual Conference: Bringing together clinicians, researchers, and caregivers
- CME Courses: Continuing medical education on LBD diagnosis and management
- Clinical Guidelines: Publishing best practices for LBD care
- Webinar Series: Monthly education for healthcare providers
LBDA works with global partners:
- Lewy Body Dementia Society (UK): Joint awareness campaigns
- International DLB Consortium: Consensus criteria development
- Michael J. Fox Foundation: Synuclein research collaboration
- Alzheimer's Association: Joint research funding initiatives
- Awareness: Increased LBD awareness from <10% to >50% recognition among healthcare providers
- Research Funding: $5+ million in LBD-specific research
- Clinical Centers: 28+ Centers of Excellence
- Patient Support: 10,000+ individuals served annually
The study of Lewy Body Dementia Association has evolved significantly over the past decades. Research in this area has revealed important insights into the underlying mechanisms of neurodegeneration and continues to drive therapeutic development.
Historical context and key discoveries in this field have shaped our current understanding and will continue to guide future research directions.
- Lewy Body Dementia Association. (2024). About LBD.
- McKeith, I.G., et al. (2017). Diagnosis and management of dementia with Lewy bodies. Neurology.
- Galvin, J.E., et al. (2021). Lewy body dementia: The caregiver's perspective.
- Walker, Z. et al. (2023). "DLB Consortium Criteria Update." Lancet Neurology.