LEWY BODY DEMENTIA ASSOCIATION INC

aka LBDA   |   Lilburn, GA   |  www.lbda.org

Mission

Through outreach, education and research, we support those affected by Lewy body dementias.

Ruling year info

2004

Vice President, Operations and Finance

Mr. Mark Wall

Vice President, Institutional Advancement

Mr Todd Graham

Main address

912 Killian Hill Road, SW Suite 204, 205

Lilburn, GA 30047 USA

Show more contact info

EIN

05-0577683

NTEE code info

Alliance/Advocacy Organizations (G01)

Neurology, Neuroscience (G96)

Alzheimer's (G83)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of the Lewy body dementias (LBD), supporting people with LBD, their families and caregivers and promoting scientific advances. The Association's purposes are charitable, educational, and scientific.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Education, Awareness and Support

Current programs include our website and online community, toll-free caregiver helpline, publication of a newsletter and informative pamphlets on LBD, online caregiver support groups, local support groups, local educational events, exhibiting at medical conferences to reach physicians and professional caregivers.

Population(s) Served
Adults
Caregivers

Support groups
Community-based live and virtual (Facebook)
Led by professionals and/or experienced caregivers
Caregiver Link
Phone and/or email support from experienced LBD caregivers
Phone: 844.311.0587
Email: [email protected]

Population(s) Served
Adults
Caregivers

With our RCOE network, the LBDA has identified 25 of the nation’s leading LBD clinicians to which LBD patients and their families can turn for advanced LBD diagnosis and treatment. Through our efforts we are connecting many experienced physicians and respected institutions that are committed to providing advanced LBD care, community outreach, and support.

Population(s) Served
People with diseases and illnesses
Caregivers

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Caregivers

Related Program

Education, Awareness and Support

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

number of research centers of excellence funded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

With our RCOE network, the LBDA has identified 26 of the nation’s leading LBD clinicians to which LBD patients and their families can turn for advanced LBD diagnosis and treatment.

Number of support groups offered

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We provide free, confidential support in a group setting to anyone affected by LBD—whether you are an LBD caregiver or are a loved one, friend, or professional caregiver of someone diagnosed.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

We are committed to being the leading authority on Lewy body dementias, relentless in the search for a cure, while providing quality support for those living with the disease and their caregivers

OUR COMMITMENT TO DIVERSITY, EQUITY, AND INCLUSION

LBD is a disease that does not discriminate. People from every walk of life, every race, culture, religion and sexual orientation can develop LBD. From the most accomplished or wealthy to the most humble of professions and those facing economic hardship every day, LBD spares no one.

Our mission is to serve ALL people touched by LBD – and to stand up and speak on their behalf, especially for those who are disproportionally impacted by LBD. Our organizational values mandate our call for greater equity and inclusion in research, access to clinical care as well as care and support services. For all.
LBDA is an organization that focuses on purpose, growth, and support, both in the delivery of our mission and internally as well. We believe the success of our organization is directly correlated with the success of our staff.

We are committed to fostering an environment that supports and celebrates diversity, equity, and inclusion. When our board, staff and volunteers feel supported and empowered, it spreads to the community we serve.
LBDA is at its best when every member of our team feels respected, included, and heard—when everyone can show up as themselves and do their best work every day.

And we are committed to delivering on our mission in exactly the same way.

We currently have a staff of 16 people and a network of volunteers around the country. The organization is structured around the following goals outlined here:
• Raise the resources to support the mission. LBDA will continue to build on its strong foundation of dedicated individual donors while seeking to expand revenue sources to include major donors, family foundations, and corporate/industry relationships.
• Continually develop educational programing, that supports the spectrum of medical providers to serve people with LBD, their care partners and families. LBDA will work with medical professionals, allied health providers and networks of care providers to support education activities, enhancing the awareness and understanding of all aspects of LBD.
• Bring care and support closer! Patients, care partners, and providers have a better understanding of LBD and can better assess and utilize resources and support through LBDA no matter their location.
• Catalyze research across the RCOE network. Increase the funding of the Research Centers of Excellence program to seed and grow additional grant applications and projects across the network.
• Continue LBDA’s recognition as a national leader in the dementia space. LBDA will increase advocacy for increasing federal funding and services to meet the needs of the LBD community.
• Enhance infrastructure for evolution and growth. LBDA’s human capital infrastructure will focus on stratified and cross divisional growth across all aspects of the entity: board, staff, volunteers, donors, councils and committees; to enhance the structures, strategies and communication platforms necessary to evolve and mature the Association in a planned, organized and fiscally responsible manner

Great progress has been made in the past years including:
--increase in traffic to our website www.lbda.org. Currently we serve about 50,000 viewers a month
-- increase in Facebook followers from 20,963 to 25,659 (22.4%)
--increase in Support Groups to over 140 live and virtual groups meeting at least monthly
--funding and launch of the Research Centers of Excellence program at 26 of the top academic/medical research centers in the US (https://www.lbda.org/rcoecenters/)
--working with 5 pharma/biotech companies to help recruitment for clinical trials
--having our own Sr. Director of Research and Advocacy, Angela Taylor on the Advisory Council on Alzheimer's Research, Care, and Services meets quarterly to discuss programs that impact people with Alzheimer's disease and related dementias (AD/ADRD) and their caregivers. This is a federally funded initiative which has resulted in funding for Lewy body dementia and other non Alzheimer dementias to be increased.
--LBDA revenues have increased year over year. Total net assets of approximately $3.6 million (2019)

Financials

LEWY BODY DEMENTIA ASSOCIATION INC
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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LEWY BODY DEMENTIA ASSOCIATION INC

Board of directors
as of 02/22/2022
SOURCE: Self-reported by organization
Board co-chair

Ms. Christina Christie

No Affiliation

Term: 2015 - 2021


Board co-chair

Ms Shannon McCarty-Caplan

Marshall Cannon

James Galvin, MD

Andy Matteis

Emily Pualwan

Tony Schueth

Roger Bean

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 3/4/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability