PLATINUM2023

BrightFocus Foundation

Cure in Mind. Cure in Sight.

aka Alzheimer's Disease Research, Macular Degeneration Research, and National Glaucoma Research   |   CLARKSBURG, MD   |  https://www.brightfocus.org/

Mission

BrightFocus funds exceptional scientific research worldwide to defeat Alzheimer’s disease, macular degeneration, and glaucoma and provides expert information on these heartbreaking diseases.

Ruling year info

1974

President and CEO

Mrs. Stacy Haller

Main address

22512 GATEWAY CENTER DR

CLARKSBURG, MD 20871 USA

Show more contact info

Formerly known as

American Health Assistance Foundation

EIN

23-7337229

NTEE code info

Alzheimer's (H83)

Eye (H41)

Eye Diseases, Blindness and Vision Impairments (G41)

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

BrightFocus is leading the fight against the devastating conditions we fear most: loss of mind and loss of sight.

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?

Alzheimer's Disease Research

Every 65 seconds, someone in America develops Alzheimer's disease, an irreversible degeneration of the brain that causes disruptions in memory, cognition, personality, and other functions. More than 6.5 million Americans age 65 and older are thought to have Alzheimer’s disease, and at least 50 million people worldwide are believed to be living with Alzheimer's or other dementias.

BrightFocus' Alzheimer's Disease Research (ADR) program funds innovative research worldwide to end this tragic disease. We are also committed to sharing the latest research findings, expert information, and Spanish/English disease resources with those directly affected by the disease and their caregivers. Since 1985, ADR has awarded nearly $170 million to support the full range of promising research avenues in fields ranging from molecular biology to epidemiology.

ADR is currently supporting 167 active scientific projects around the world across a $75+ million research portfolio.

Population(s) Served
Adults
Families

Glaucoma is a leading cause of irreversible blindness in the United States and the world. Glaucoma relates to a group of eye disorders that have few symptoms in their early stages but that eventually result in damage to the optic nerve (the bundle of nerve fibers that carries information from the eye to the brain).

Glaucoma can lead to loss of side vision and eventually to complete blindness. More than 3 million Americans are living with glaucoma; half do not know it.

BrightFocus' National Glaucoma Research (NGR) funds innovative research to find a cure for glaucoma and educate the public about this "sneak thief of sight." Since the program's inception in 1978, NGR has awarded nearly $47 million to support groundbreaking research into the causes and potential approaches to prevent and treat this disease.

NGR is currently supporting 62 innovative research projects worldwide across a nearly $14 million grants portfolio.

Population(s) Served
Adults
People with vision impairments

Age-related macular degeneration (AMD) is an irreversible destruction of the central area of the eye’s retina (the macula), which leads to loss of the sharp, fine-detail, "straight-ahead” vision required for activities like reading, driving, recognizing faces, and seeing the world in color. Macular degeneration is a leading cause of vision loss in Americans 60 years of age and older and of irreversible blindness in the world. New estimates have shown that as many as 20 million people in the United States are living with some form of macular degeneration.

BrightFocus' Macular Degeneration Research (MDR) program funds innovative research to defeat age-related macular degeneration and provide critical information to the public. Since the program's inception in 1997, MDR has granted nearly $47 million supporting research into the causes of and potential treatments for this incurable disease.

MDR is currently supporting 62 active research projects across a $16 million grants portfolio.

Population(s) Served
Adults
People with vision impairments

Where we work

Accreditations


Since 2009

Better Business Bureau Wise Giving Alliance 2016

HONCode 2000

Awards

Seal of Excellence 2010

Maryland Nonprofits' Standards for Excellence

Our results

SOURCE: Self-reported by organization

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

Total number of grants awarded

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

Adults, Families, People with vision impairments

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total number of actively managed science projects

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

Adults, Families, People with vision impairments

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total dollar amount of actively managed science projects

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

Adults, Families, People with vision impairments

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total dollar amount of grants awarded

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

Adults, Families, People with vision impairments

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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.

BrightFocus Foundation is a premier nonprofit funder of research to slow, prevent, treat, and ultimately end three diseases affecting mind and sight: Alzheimer’s disease, macular degeneration, and glaucoma. These diseases currently have no cure and impact more than 300 million people worldwide—1 in 7 people over age 40.

Through its flagship research programs—Alzheimer’s Disease Research, National Glaucoma Research, and Macular Degeneration Research—the Foundation is currently supporting a $75 million portfolio of 287 innovative scientific projects around the world.

BrightFocus shares the latest research findings, expert information, and English/Spanish disease resources to empower the millions impacted by these devastating diseases and raise awareness about the diseases' human, social, and financial impact on our communities, our nation, and the world.

We support bold, promising research, acting as a catalyst for scientists to pursue innovative ideas that push the frontiers of discovery. These are the ideas that may transform our understanding of these diseases and accelerate the path to treatments and a cure. Much of the work we support occurs earlier in the scientific pipeline, where other sources of funding can be scarce. Our 360-degree approach to funding research examines the full range of scientific paths toward better treatments and ultimately a cure for Alzheimer's, macular degeneration, and glaucoma.

We are a trusted source of information, sharing the latest research updates and helpful resources with individuals and families impacted by these diseases. We deliver this information through a series of free print materials and digitally through our website, brightfocus.org, our growing social media communities, educational programming programming, and more.

BrightFocus works closely with nonprofit and corporate partners on issues of common concern. As a respected member of broad coalitions, we communicate with key policymakers and elected officials on the importance of research funding and caregiving support.

BrightFocus has a strong track record of being a consistent source of early-stage research support. We have awarded nearly $275 million in research funding to date on diseases of mind and sight. This support has funded research across the U.S. and in 25 other countries across the globe. We ensure the high quality of research proposals through our rigorous peer review process involving world-class, renowned scientists and clinicians who identify and support the science with the greatest potential to succeed.

More than 75% of our research funding is awarded to early-career investigators, many of whom have gone on to become prominent industry leaders— in fact, our funding helped launch the careers of two Nobel Prize winners. Most BrightFocus-funded researchers go on to receive ten times the amount of their initial BrightFocus grant from larger funding sources, including the National Institutes of Health.

Accomplishments

• BrightFocus has steadily increased the funding of our research awards, nearly $100 million in the last five years alone, and increased the size and scope of BrightFocus public education and engagement, as described above.

• Discoveries by BrightFocus-funded scientists have shaped the field for 50 years and include many groundbreaking “firsts,” including the development of the first widely accessible blood test in the U.S. to identify early signs of Alzheimer’s disease, the first-ever reversal of age-related vision loss and eye damage from glaucoma using gene therapy, and the world’s first artificial intelligence model that detects Alzheimer’s by reading a patient’s retina images.

• We continue to increase the amount of funding available for high-impact investigator-initiated research. In 2022, BrightFocus awarded nearly $25 million in grants, a fivefold increase in annual funding from a decade ago. Since inception BrightFocus has supported 1,826 research projects for a total of nearly $275 million.

• We continue to broaden the field of research and are proud that this year, 44% of our awarded scientists are women; nearly 25% are to leading institutions outside the U.S., and 80% of the new awards support promising early-career researchers.

• Our public awareness efforts reach millions of people via television and radio public service announcements and digital engagement campaigns. BrightFocus serves as a presentation partner for the acclaimed documentary “Turning Point,” which raises awareness about Alzheimer’s clinical trials. We have increased our participation and influence in Washington-based coalitions that advocate for greater federal support for research.

Still to be Accomplished

• Although our research funding is at an all-time high, and collaboration with advocacy coalitions has been fruitful, BrightFocus and other like-minded organizations have still not ended Alzheimer's disease, glaucoma, or macular degeneration. And despite progress in public awareness of these diseases and greater participation in clinical trials, collectively we have still not removed the stigma associated with these three diseases, and with Alzheimer's in particular. More financial support from foundations, government, and industry is needed to defeat these diseases of mind and sight.

• We must work to increase our nation's commitment and level of research funding to end these diseases. That will take the building of a substantial public network to advocate for increased federal funding. When scientists cannot get the resources they need to move forward, this delays discovery, treatments, and a potential cure for people with diseases of mind and sight.

Despite these challenges, BrightFocus Foundation has hope—based on the brilliance of our funded scientists and the commitment of our donors and advocates—that we will one day end these diseases of mind and sight.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
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 demographics (e.g., race, age, gender, etc.), 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

BrightFocus Foundation
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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

Subscribe

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.

BrightFocus Foundation

Board of directors
as of 07/20/2023
SOURCE: Self-reported by organization
Board co-chair

Patricia Stewart, CFP®

J.P. Morgan & Co., Inc., retired

Term: 2020 -


Board co-chair

Cecilia Arradaza

Stanford Medicine

Term: 2020 -

Stanley B. Prusiner, MD

University of California, San Francisco

Maddy Dychtwald

Age Wave

Jan M. Stouffer, PhD

DuPont Company, retired

Scott A. Kaiser, MD

Motion Picture & Television Fund/ Pacific Brain Health Center

Cecilia Arradaza

Stanford Medicine

Shawna Gottlieb

Cummins Behavioral Health Systems

Tonya M. Matthews, PhD

Wayne State University

Edward J. Finley II

University of Virginia

Dana Griffin

Eldera.ai

Patricia McGlothlin Stewart, CFP®

J.P. Morgan & Co., Inc., retired

Stacy Pagos Haller

BrightFocus Foundation

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 3/7/2023

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
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 04/21/2023

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 disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.