PLATINUM2024

LEWY BODY DEMENTIA ASSOCIATION INC

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

Mission

To optimize the quality of life for those affected by Lewy body dementia, we accelerate awareness, advance research for early diagnosis and improved care, and provide comprehensive education and compassionate support.

Notes from the nonprofit

From our 2024-2026 Strategic Plan: Our Goals: Strategy Planning & Management Process The Big Picture 1. Talent Cultivate a mission-driven culture that values diversity, equality, access and inclusion (DEAI), autonomy and collaboration, and a commitment to staff recognition, growth, and opportunity. 2. Funding Maximize revenue streams in a responsive and responsible manner to fund the growth of LBDA and our mission-centric initiatives. 3. Identity Be the leading authority on LBD. 4. Research Accelerate LBD research that advances detection and understanding of disease progression, improves quality of life, and uncovers new treatments. 5. Support Foster an inclusive, interconnected community of those symptomatic or affected by LBD throughout the disease journey. 6. Education Increase understanding of LBD and foster the utilization of best practices in diagnosis, clinical management, and care strategies

Ruling year info

2004

Chief Executive Officer

Mrs. Allison Feldman

Main address

912 Killian Hill Road, SW Suite 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?

Advancing Research, Professional/Community Education, and Support

Our key programs include:
Research Centers of Excellence: LBDA collaborates with 26 of the nations leading LBD academic medical institutions to which people with LBD and their families can turn for advanced LBD diagnosis and treatment. Through our combined efforts we are connecting the LBD community with highly specialized physicians and respected institutions that are committed to conducting LBD research.
Professional and Community Education: We provide free webinars, printed and electronic materials to healthcare providers and those affected by LBD and their care partners.
Support: LBDA has more than 80 support groups around the country; we also offer one-on-one support through our Lewy Line.

Population(s) Served
Adults
Caregivers

Support groups
Community-based live and virtual led by professionals and/or experienced care partners.
Lewy Line
Phone and/or email support from licensed social work professionals
Phone: 844.311.0587
Email: [email protected]

Population(s) Served
Adults
Caregivers

With our RCOE network, the LBDA works with 26 of the nations leading medical institutions 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

Advancing Research, Professional/Community Education, 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

Related Program

Research Centers of Excellence

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

With our RCOE network, the LBDA has identified 26 of the nations 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.

Number of donations made by board members

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

Other - describing something else

Direction of Success

Holding steady

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)

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

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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lock

Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

LEWY BODY DEMENTIA ASSOCIATION INC

Board of directors
as of 03/28/2024
SOURCE: Self-reported by organization
Board chair

Ms. Sarah Sung

No Affiliation

Term: 2024 - 2028

Marshall Cannon

James Galvin, MD

Roger Bean

Anitha Rao

Carla Abdelnour

Jeffrey S. Jacob

Angela Lunde

Rodney F. Witcher II

Sarah Sung

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 ? Yes
  • 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 3/28/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

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

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 03/28/2024

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.