Medical Research

BrightFocus Foundation

  • CLARKSBURG, MD
  • www.brightfocus.org

Mission Statement

BrightFocus drives innovative research worldwide and promotes awareness of Alzheimer's, macular degeneration, and glaucoma.

Main Programs

  1. Alzheimer's Disease Research
  2. National Glaucoma Research
  3. Macular Degeneration Research
Service Areas

Self-reported

International

BrightFocus Foundation, known until 2013 as the American Health Assistance Foundation, responds to requests for free educational materials and awards grants to scientific researchers in the United States and throughout the world.

ruling year

1974

President and CEO

Self-reported

Mrs. Stacy Haller

Keywords

Self-reported

alzheimer's disease, macular degeneration, glaucoma

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Also Known As

Alzheimer's Disease Research, Macular Degeneration Research, and National Glaucoma Research

EIN

23-7337229

 Number

1321406900

Physical Address

22512 Gateway Center Drive

Clarksburg, MD 20871

Contact

Cause Area (NTEE Code)

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.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

BrightFocus Foundation is one of America's leading supporters of investigator-initiated scientific research to slow, treat, and end brain and eye diseases, including Alzheimer's disease, age-related macular degeneration, and glaucoma. To date we have awarded more than $163 million in research grants to some of the most promising scientists at universities, hospitals, and medical centers around the world. BrightFocus grants have supported more than 1,300 innovative projects and more than 4,000 scientists who have dedicated their careers to ending these dreaded diseases. Over BrightFocus' history, every $100 investment in scientists' projects has resulted in an average of more than $1000 dollars in future funding for those grantees. Since we were founded in 1973, our grants have catalyzed more than a billion dollars in research worldwide. A survey of all scientific reports developed as a result of our grants showed that the research findings resulting from BrightFocus-funded studies funded are consistently measured at twice the impact as other findings in our fields of research, using accepted standard measurements. The free online scientific journal Molecular Neurodegeneration is the official journal of BrightFocus Foundation. Through this peer-reviewed publication, current information on scientific studies funded by BrightFocus and others is made freely available.

Programs

Self-reported by organization

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

Program 1

Alzheimer's Disease Research

Alzheimer’s disease is the sixth leading cause of death in the United States. It is an irreversible degeneration of the brain that causes disruptions in memory, cognition, personality, and other functions. It eventually leads to death from complete brain failure. More than five million Americans age 65 and older are thought to have Alzheimer’s disease. The human and economic costs of the Alzheimer’s epidemic are staggering. Each year a half million Americans hear the diagnosis: “you have Alzheimer’s disease.” By 2050, the number of Americans with this disease may increase to more than 15 million, and the costs to Medicare—if not already bankrupted by it—could exceed a trillion dollars.

BrightFocus' Alzheimer's Disease Research (ADR) program seeks to avert this tidal wave by funding research worldwide to end this tragic disease. We are also committed to fully informing the public, those directly impacted and their caregivers, about this disease by offering updates on the latest research, as well as risk factors, prevention, and coping strategies. Since 1985, ADR has awarded more than $100.5 million to support promising research in fields ranging from molecular biology to epidemiology.

Category

Population(s) Served

Aging/Elderly/Senior Citizens

Adults

General Public/Unspecified

Budget

$15,938,504

Program 2

National Glaucoma Research

BrightFocus National Glaucoma Research (NGR)  funds research on and educates the public about glaucoma. Since the program's inception in 1978, NGR has awarded more than $28.6 million to support basic research into the causes and potential approaches to prevention and treatments of this disease.

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 yet know it.

NGR is currently supporting 31 biomedical research projects, after awarding 13 grants in 2016.

Category

Population(s) Served

Blind and Vision Impaired

General Public/Unspecified

None

Budget

$4,633,071

Program 3

Macular Degeneration Research

BrightFocus' Macular Degeneration Research (MDR) program funds research on and informs the public about age-related macular degeneration. Since the program's inception in 1997, MDR has granted more than $21.5 million supporting basic research into the causes of and potential treatments for this incurable disease. 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 is the second-highest cause of irreversible blindness in the world. As many as 11 million people in the United States have some form of macular degeneration, a number expected to double by 2050.

Category

Population(s) Served

Blind and Vision Impaired

General Public/Unspecified

Budget

$8,085,137

Charting Impact

Self-reported by organization

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

  1. What is the organization aiming to accomplish?
    The mission of BrightFocus Foundation is to save mind and sight by funding innovative science worldwide and by promoting better health through education.

    BrightFocus supports promising new 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 one out of every 16 Americans over age 40.

    Importantly, we provide public information on the diseases, which includes the latest knowledge gained from research; health information; and advocacy to raise awareness about the diseases' human, social, and financial impact on our communities, our nation, and the world.
  2. What are the organization's key strategies for making this happen?
    We choose to support bold, promising research so that we act as a catalyst, allowing scientists to develop and pursue innovative ideas that push the frontiers of discovery. This is usually at the start of the scientific pipeline, where there is not support initially from other, more conventional sources of funding such as the federal government.

    As a result, BrightFocus occupies a unique position in research funding— identifying and supporting some of the most cutting-edge science around the world. These are the ideas that may transform our understanding of these diseases and accelerate the path to treatments and a cure.

    We also work to deliver timely and trusted information to people impacted by these diseases, empowering them in the efforts to slow, prevent, or treat diseases of mind and sight. This occurs through multiple channels, including: printed materials, the online resources of an excellent website, video and audio programs, public service announcements, and community forums.

    Finally, in public advocacy, we work both independently and with other organizations to fight for a continuous and robust support of research and scientists, as well as resources for patients and their families.
  3. What are the organization's capabilities for doing this?
    BrightFocus has a strong track record of being a consistent source of early-stage research support. We have provided more than $140 million in research funding to date, awarding more than $35 million for research on diseases of mind and sight in the last five years alone. This support has funded research across the U.S. and in 21 other countries across the globe.

    At the same time, we ensure the high quality of research proposals through our rigorous peer review involving world-class, renowned scientists and clinicians.
    This tough vetting process results in identifying and supporting the science with the best potential to succeed. In fact, the return on our investment is that 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. Equally important, this track record enables scientific leaders to sustain novel ideas and research capabilities, keeping innovative science alive in a tough funding environment.

    BrightFocus is a trusted source of information. Expanded awareness campaigns increase our reach and empower more people living with these diseases, their caregivers, and policy makers to access vital information about the diseases through multiple channels.

    Our website, www.brightfocus.org, delivers a wealth of information on research, symptoms, treatments, caregiver support, and more. We also have an extensive list of free publications that we distribute, in both English and Spanish.

    Through collaborations and partnerships we continue to expand our outreach, to help people affected by these diseases get the information they need, when and where they need it. For example, working with vision care specialists, we offer our materials for the offices of eye professionals. Additionally, we currently host an informative, interactive telephone chat on vision diseases, offered on a monthly basis.

    BrightFocus plays a prominent role in coalitions of like-minded organizations to advocate for persons impacted by these diseases. Together, these coalitions multiply efforts to expand public awareness of the costs and effects of these diseases, and the need for more research support.
  4. How will they know if they are making progress?
    We have been fine tuning our research identification and measurement process for more than four decades, resulting in the accomplishments mentioned here. We combine both qualitative and quantitative approaches to measure program success and ensure continual results.

    We also chart our success against a five-year strategic plan, with targets and metrics for achieving our goals in research funding and program development. These are reviewed internally each month and at least quarterly with our board of directors.

    For example, one important goal is to double the funding of our high-impact research grants.

    BrightFocus also uses benchmarks to measure research progress, information, and impact.

    • Research papers are the way scientists report their important discoveries to the public. Information can be tracked and benchmarked. BrightFocus-supported research findings are consistently cited by scientists at twice the frequency of other research findings. This means that other scientists are building upon those findings to propel the field forward.

    • Our official, open-access, Alzheimer's research journal, Molecular Neurodegeneration, is now rated as having the second-highest impact of all Alzheimer's-related journals. Medical science benefits when high-quality journals are open for all to see and share critical information.

    • Our research funding has led to major contributions in the understanding of these diseases. Two of our grantees went on to receive separate Nobel Prizes in Physiology or Medicine, for advancing understanding of the human brain.

    We can track increasing public engagement in BrightFocus programs and materials. Examples include:

    • The launch of the BrightFocus Chats series, providing practical information to all impacted by macular degeneration allows us to have a deeper, ongoing relationship with constituents. The frequency of connections and increases to our audience will be tracked.

    • Daily monitoring by Constituent Services, which will be tracked and compared year over year. We hear and respond to constituent concerns through communications by social media, website, mail, and telephone. This will allow us to analyze the effectiveness of information we share, and quickly adapt to constituent needs and interests.

    • Public service announcement campaigns will disseminate critical information about eye health, and include specific measurements to track progress toward key goals.

    • Social media and advocacy strategies designed to increase public interaction will be tracked to document an increase in the rate of engagement and usefulness of disseminated information with BrightFocus through these channels.
  5. What have and haven't they accomplished so far?
    Accomplishments
    In research and in public outreach campaigns, we have increased the funding of our research awards, and increased BrightFocus engagement with the public, as described above.

    • We continue to increase steadily the amount of funding available for high-impact research. Since inception BrightFocus has supported 1,300 research projects for a total of more than $163 million: one quarter of that amount was distributed in the last five years alone.

    • Beyond the success of our core programs, we have expanded the reach of support to science by developing a strategic funding mechanism to target specific initiatives with more immediate benefits. Examples include recent clinical trials to test FDA-approved drugs from other diseases. We are also asking what “big data" can reveal about how our bodies resist Alzheimer's disease.

    • 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 collaboration with coalitions has been fruitful, BrightFocus and other like-minded organizations have still not ended Alzheimer's disease, glaucoma, or macular degeneration. Despite progress in public attitudes and awareness of these diseases, 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 are needed to defeat diseases of mind and sight.

    • In advocacy, we must all 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 one day these diseases can be stopped.
Service Areas

Self-reported

International

BrightFocus Foundation, known until 2013 as the American Health Assistance Foundation, responds to requests for free educational materials and awards grants to scientific researchers in the United States and throughout the world.

Social Media

Funding Needs

BrightFocus is dedicated to funding high risk/high reward research for age-related degenerative diseases that have no cure. BrightFocus research projects now represent more than $163 million in direct support of promising science and those conducting it. Grant recipients have shown the impact of our generous donor support in many ways, including earning the 1997 and 2000 Nobel Prize in Physiology or Medicine. In addition, BrightFocus produces top quality public education materials that it distributes free of charge to the public. Raising funds for the extraordinary research and educational support materials is an ongoing need of BrightFocus. Though BrightFocus runs programs to address several brain and eye diseases, donors can specify exactly which program they want their money to go to and designate that their funds go to research if that is their wish.

Accreditations


Since 2009

Better Business Bureau Wise Giving Alliance

photos


External Reviews

Source: greatnonprofits.org

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

BRIGHTFOCUS FOUNDATION
Fiscal year: Apr 01-Mar 31
Yes, financials were audited by an independent accountant.

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Operations

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

BrightFocus Foundation

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2016, 2015 and 2015
  • Board Chair, Board Co-Chair and Board Members
  • Access to the GuideStar Community
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President and CEO

Mrs. Stacy Haller

BIO

Stacy Pagos Haller is President and CEO of BrightFocus Foundation. She joined the organization (then known as American Health Assistance Foundation) in 2010, bringing more than 25 years of executive experience in the nonprofit sector.

With her extensive background and unique perspective, Haller has compiled an impressive record of moving organizations to the next level of success.

Before coming to BrightFocus, Haller served as Executive Director of CureSearch National Childhood Cancer Foundation, the world's largest children's cancer research organization.

For ten years prior, Haller was a consultant to a broad range of nonprofits, helping institutions achieve their strategic goals. Clients included the American Red Cross, Baltimore Symphony Orchestra, Community Housing Foundation International, Gallaudet University, LaSalle University, Mercy Hospital Fairfield, The National AIDS Fund, YMCA of Metropolitan Los Angeles, and the National Rehabilitation Hospital.

Haller co-created one of the first outcomes measurement training programs for nonprofits. She co-taught best practices for measuring program effectiveness to hundreds of professionals and organizations.

She launched her career at Georgetown University, where she held increasingly responsible jobs, culminating in the position of Executive Director for Regional Advancement. In that capacity, she led efforts to coordinate and integrate alumni relations, development, and university relations nationally and internationally.

A graduate of Mount Holyoke College, Haller is a board member of America's Charities.

STATEMENT FROM THE President and CEO

"Today we have a unique opportunity to make a profound difference for our society and to assist the millions of Americans who suffer from diseases of mind and sight. I am gratified to learn about research breakthroughs with Alzheimer's and the vision diseases, and how our organization been on the forefront of advancing this innovative research. As we aim toward the future as BrightFocus Foundation, we are excited to be building on our proud record of success as the American Health Assistance Foundation with our extremely able and passionate staff.  We are fighting some of the most important battles on the frontiers of medicine, and we intend to be part of a winning team to end these dreaded diseases."

Governance

BOARD CHAIR

Mr. Scott Rodgville CPA

No affiliation

Term: June 2015 -

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

Yes

BOARD ORIENTATION & 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 & 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?