Lewy Body Dementia Resource Center

What Lewy Body Dementia Resource Center does

Lewy Body Dementia Resource Center (LBDRC) is a 501(c)(3) charitable nonprofit founded in 2016 by Norma Loeb and headquartered in Northport, New York, that serves caregivers, people living with Lewy Body Dementia (LBD), and healthcare professionals across the United States. The organization operates the only live helpline dedicated to LBD in the country, available 365 days a year at 833-LBD-LINE, and complements it with state-specific support groups and therapeutic activity listings in New York, Florida, and California. Its core technology footprint consists of a multilingual website delivering LBD content in 11+ languages, a library of downloadable guides and tracking tools (Medical Alert Card, Monthly Symptom Tracker, LBD Complete Guide, Caregiver Guide), and multimedia assets including the 'Views From Within' video series and the weekly 'Lewy Body Roller Coaster' podcast.

The organization's offerings are organized around three primary service lines: direct caregiver and patient support (helpline, support groups, Brian's Buddies social-isolation program, therapeutic activity directories), medical-professional education (SUNY Mini-Symposiums, webinars, a provider directory, and links to the Movement Disorder Society specialist directory), and awareness (Lincoln Center film screenings, New York Times, USA Today, AARP and Queens Chronicle earned media, and social channels on Facebook, LinkedIn, YouTube, and Instagram). LBDRC is a founding member of Lewy Body International, a coalition of LBD organizations across 4 continents and 9 countries.

LBDRC generates no commercial revenue; all services are provided free of charge to patients and caregivers, and the operating model is funded entirely by individual donations, tribute gifts, foundation grants, and event sponsorships such as the Lincoln Center and SUNY programming. Customer segments are threefold — care partners and caregivers (primary), people living with early to mid-stage LBD, and healthcare professionals — and the go-to-market motion is community-led awareness, content distribution, and direct helpline engagement rather than commercial sales.

Name

Lewy Body Dementia Resource Center

Legal name

Lewy Body Dementia Resource Center

Website

https://lewybodyresourcecenter.org

Company type

Private

Founded year

2016

Operating status

Operating

Headcount range

11–50 employees

Short description

Lewy Body Dementia Resource Center is a 501(c)(3) nonprofit that operates the only live LBD helpline in the United States and delivers multilingual education, support groups, and caregiver resources to families and clinicians affected by Lewy Body Dementia.

Ownership category

akta.pro rank

Product category

Disease-Specific Patient Advocacy and Caregiver Support

NAICS

Services for the Elderly and Persons with Disabilities (624120), Services for the Elderly and Persons with Disabilities (62412), Other Individual and Family Services (624190)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Memory Care Care Management & Navigation (Dementia Care Coordination) (HLADACAJ)

akta.pro secondary industries

Dementia Care Coordination & Care Planning (HSABAEAJ), Dementia Companion & Engagement Care (HSABAEAA)

Keywords

• Dementia support services
• Caregiver helpline
• Health education resources
• Nonprofit patient advocacy
• Community support programs

Headquarters

HQ city

Long Beach

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Contributions: As a 501(c)(3) charitable nonprofit organization, LBDRC operates entirely on donations from individuals, foundations, and corporate sponsors. The organization accepts one-time and monthly donations, tribute gifts (in memory or honor of someone), and check donations.
2. Event Sponsorships: Revenue generated through event sponsorships such as the Lincoln Center Robin's Wish screening and SUNY LBD Mini-Symposium, with Silver Sponsors like 80th Street Residence and Alexandria Real Estate Equities supporting events.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

The Lewy Body Dementia Resource Center is a 501(c)(3) nonprofit that provides free support, education, and resources to individuals and families affected by Lewy Body Dementia. Its primary offerings are a 24/7 live national helpline, multilingual educational content in 12+ languages, caregiver support groups, the Brian's Buddies social connection program, original video and podcast content, and a directory of LBD-knowledgeable medical professionals across multiple U.S. states.

Product overview

The Lewy Body Dementia Resource Center operates as a nonprofit information and support organization offering a comprehensive suite of services for LBD patients and caregivers. The core offerings include a 24/7 Helpline, educational guides and resources (Lewy Body Dementia Complete Guide, Caregiver Guide, downloadable tools), multilingual content in 11 languages, and media content including the Views From Within video series, webinars, and the Lewy Body Roller Coaster podcast. The organization provides the Brian's Buddies social connection program and maintains a Doctor & Professional Directory across multiple U.S. states. Therapeutic services information covering art, dance, drama, drumming, music, yoga, and other evidence-based therapies is also provided. These services are designed to work together to provide awareness, education, support, and improved quality of life for those affected by Lewy body dementia.

Differentiator

Problem solved

Functional benefit

Brands

• Brian's Buddies: A program that connects small groups of early to mid-stage individuals with LBD who have similar interests, dedicated to ending social isolation of people living with LBD.
• Views From Within
• Lewy Body Roller Coaster

Products and services

• LBD Helpline (833-LBD-LINE) The only live helpline for Lewy Body Dementia in the United States, available 365 days a year to provide loving support to caregivers and people living with LBD. Accessible at 516-218-2026 or 833-LBD-LINE (833-523-5463).
• Educational Resources & Guides Comprehensive downloadable educational guides providing caregivers, patients, and clinicians with authoritative information about LBD symptoms, diagnosis, treatment, medications, and transitions.
• Multilingual LBD Resources (12+ Languages) LBD information covering symptoms, diagnosis, treatment, medications, and transitions translated into 12+ languages for global accessibility through the international Lewy Body International coalition.
• Views From Within Video Series Original video series featuring personal stories and experiences from families directly affected by LBD to provide community support and authentic awareness content.
• Lewy Body Roller Coaster Podcast Weekly podcast hosted on Buzzsprout sharing firsthand experiences from LBD patients and their families about living with the disease.
• Brian's Buddies Program Social connection program dedicated to ending the social isolation of people living with LBD by matching small groups of early to mid-stage individuals with similar interests.
• Therapeutic Activities and Recreation Evidence-based therapeutic and recreational activity directory including art therapy, music therapy, dance, drumming, yoga, reiki, speech therapy, occupational therapy, and physical therapy for LBD patients in New York, Florida, and California.
• Doctor & Professional Directory State-by-state directory of neurologists, geriatricians, movement disorder specialists, and other medical professionals familiar with LBD, covering New York, Florida, California, and other U.S. states, including links to the Movement Disorders Society Worldwide Directory.
• Caregiver and Patient Support Groups State-specific support groups for caregivers and people living with LBD, currently available in New York, Florida, and California, providing peer community and shared experience.
• LBD Educational Webinars Educational webinar presentations covering LBD topics, caregiving strategies, and medical professional training for caregivers, families, and clinicians.

Quantifiable outcome

• 1.4 million Americans affected by LBD served with resources and support

Named customers2 records

Segments3 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Six partnerships are on record, tiered core, flagship and minor.

• State University of New York (SUNY)coreStrategic or Co-development Partner · 18 July 2019Co-hosted LBD Mini-Symposium & Roundtable for Medical Professionals with SUNY at their headquarters in Midtown Manhattan. Dr. Mantosh Dewan, interim president of SUNY Upstate Medical University, co-hosted with LBDRC founder Norma Loeb. SUNY Chancellor Kristina Johnson welcomed attendees.
• Lincoln Center (Walter Reade Theater)flagshipGTM or Marketing Partner · 17 July 2019Hosted the exclusive private film screening of 'Robin's Wish' documentary about Robin Williams and his LBD diagnosis. 200 attendees including LBD families, Susan Schneider Williams, director Tylor Norwood, and Robin Williams' Julliard classmates. Event included cocktail reception.
• 80th Street ResidenceminorGTM or Marketing Partner · 17 July 2019Silver sponsor of the Lincoln Center event. Described as the first and only Assisted Living Community in New York City entirely devoted to Memory Care.
• Alexandria Real Estate Equities, Inc.minorGTM or Marketing Partner · 17 July 2019Silver sponsor of the Lincoln Center event. Hosts The Alexandria Summit, an annual invitation-only gathering of scientific thought leaders in life science research and development.
• Lewy Body InternationalcoreStrategic or Co-development PartnerLBDRC is a founding member of Lewy Body International, an international coalition of LBD organizations spanning 4 continents and 9 countries. This partnership enables the organization to extend its reach globally and share resources with the international community.
• Movement Disorders SocietycoreStrategic or Co-development PartnerLBDRC links to the MDS Worldwide Directory of Movement Disorders Specialists, helping patients and families find qualified specialists in their area.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Others

• National Council on Aging: A national nonprofit focused on improving the health and economic security of older adults, including those with dementia and their caregivers. It is an adjacent ecosystem player that broadly competes for eldercare donor dollars and policy attention.

Direct peers

• Lewy Body Dementia Association: The largest US nonprofit dedicated specifically to Lewy Body Dementia, providing education, resources, support, and research funding for LBD families and clinicians. It is LBDRC's most direct national peer, overlapping heavily on patient/caregiver education and medical-professional outreach.
• BrightFocus Foundation: A nonprofit funding research and providing public education on Alzheimer's, macular degeneration, and glaucoma. Its dementia education and caregiver resources put it in direct comparison with LBDRC's disease-specific information mission.
• Dementia Society of America: A national nonprofit providing education, awareness, and support resources across all forms of dementia, including LBD. It competes directly with LBDRC for caregiver mindshare and donor dollars in the dementia resource category.
• Association for Frontotemporal Degeneration (AFTD): A nonprofit focused on frontotemporal degeneration, another less-common dementia. It shares LBDRC's model of building disease-specific education, helpline support, and medical-professional resources for an under-served dementia population.
• Family Caregiver Alliance: A national nonprofit serving caregivers of adults with chronic, disabling health conditions including dementia. It mirrors LBDRC's caregiver-support model (support groups, education, navigation) and competes for caregiver mindshare across the same population.

Emerging players

• Parkinson's Foundation: A national nonprofit serving the Parkinson's disease community, which has substantial clinical and symptomatic overlap with Lewy Body Dementia. It is an adjacent player whose audience partially intersects with LBDRC's and which increasingly engages on LBD-related content.
• CurePSP: A nonprofit supporting people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and related atypical parkinsonian disorders including Lewy Body Dementia. It shares LBDRC's niche-disease resource model and addresses clinically overlapping populations.

Broad incumbents

• Alzheimer's Association: The dominant US nonprofit in the broader dementia category, offering a 24/7 helpline, education programs, support groups, and research funding that overlap with LBDRC's offerings. It serves as the broad incumbent whose scale dwarfs LBDRC but whose LBD-specific depth is limited.
• Alzheimer's Foundation of America: A national nonprofit providing education, support groups, a helpline, and resources for families affected by dementia. It is a broader incumbent whose dementia-focused services overlap meaningfully with LBDRC's caregiver and patient offerings.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UC5itsA_qyrsfCkAVLnJwcSA
• Facebookfacebook.com/lewybodyNY
• LinkedInlinkedin.com/company/lewy-body-dementia-resource-center-of-new-york
• Instagraminstagram.com/lewybodyny

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Lewy Body Dementia Resource Center