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BrightFocus Foundation

 
CLARKSBURG, MD
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

BrightFocus Foundation
Physical Address: CLARKSBURG, MD 20871 
EIN: 23-7337229
Web URL: www.brightfocus.org 
NTEE Category: H Medical Research
H83 Alzheimer's
H Medical Research
H41 Eye
G Disease, Disorders, Medical Disciplines
G41 Eye Diseases, Blindness and Vision Impairments
Ruling Year: 1974 


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Mission Statement

BrightFocus Foundation seeks to save mind and sight by funding innovative research worldwide and by promoting better health through education. BrightFocus Foundation is a nonprofit organization supporting research and providing public education to help eradicate brain and eye diseases, including Alzheimer’s disease, macular degeneration, and glaucoma. Known until 2013 as the American Health Assistance Foundation, BrightFocus is working to save mind and sight. BrightFocus is at the forefront of brain and eye health, advancing early-stage, investigator-initiated research around the world. We also provide free educational materials to people affected by or interested in these diseases, empowering them to take action for themselves and others. They can take advantage of news and research results offered through BrightFocus websites, publications, social media, videos, podcasts, and TV and radio public service announcements. Through our toll-free phone number, 1-800-437-2423, people can speak directly with a member of our information services staff, Monday through Friday from 9am to 5pm Eastern time, for support, answers to questions, and referrals.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses (GuideStar Exchange,
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July 2014)

Fiscal Year Starting: April 1, 2010
Fiscal Year Ending: March 31, 2011

Total Revenue $21,542,964
Total Expenses $21,099,644

Revenue & Expenses (GuideStar Exchange,
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Fiscal Year Starting: April 1, 2010
Fiscal Year Ending: March 31, 2011

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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Mrs. Stacy Haller

Profile:

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.

Leadership Statement:

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.

Board Chair (GuideStar Exchange,
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July 2014)

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July 2014)

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?

Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

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 ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
YES
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
YES
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
YES
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
YES

Officers for Fiscal Year (IRS Form 990)

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People information was last updated by the nonprofit in July 2014

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Programs

Program: Alzheimer's Disease Research (GuideStar Exchange,
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July 2014)

Budget:
$14,468,050
Category:
Alzheimer Disease
Population Served:
Aging/Elderly/Senior Citizens
Adults
General Public/Unspecified

Program Description:

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 $87.7 million to support promising research in fields ranging from molecular biology to epidemiology.

Program Long-Term Success:

Program Short-Term Success:

BrightFocus’ ADR program is currently supporting 64 outstanding biomedical research projects after awarding 28 new grants in July 2014.  A listing of BrightFocus' currently funded projects is online at http://www.brightfocus.org/adrgrants. BrightFocus has informed millions of people on the healthy habits that may reduce the risk of Alzheimer's and aid caretakers in their heroic efforts to provide care and comfort to loved ones with Alzheimer's disease.  BrightFocus shares vital information with the public, including those affected by Alzheimer's disease, through its website, social and traditional media, print publications, and TV and radio public service announcements (PSA). An educational PSA about Alzheimer's disease has aired in 48 states.

Program Success Monitored by:

BrightFocus evaluates the success of its programs and initiatives in several ways. The organization monitors grant awards throughout the year by evaluating the interim and annual progress reports it requires of each grantee.  These reports are evaluated by BrightFocus' Scientific Affairs department, with support from the Scientific Review Committee, an external group of world renowned researchers. In addition, surveys are conducted in the years following the award to identify research successes that may have been publicized after the conclusion of the project. This information is compiled and reviewed regularly. Pertinent information gleaned from the oversight process is distributed via BrightFocus eAlerts, web site, social media, and newsletters. Results from the public service announcement (PSA) campaigns are closely watched for six months. Following distribution of the PSA, reports are reviewed to determine how many times a PSA is played and to learn about the audience viewing it, as well as the communities where the PSA is airing. BrightFocus Information Service staff notes the calls and emails generated by the PSAs while responding to the queries they generate. Special events are evaluated through attendance records and post-event surveys that address the participant experience and satisfaction. Public education materials are reviewed and honed by volunteers from the scientific community. Internally, this information is evaluated and improved on the basis of public demand and mission relatedness, and new materials are developed.

Program Success Examples:

To date, BrightFocus Foundation has given $140.3 million* in funds to dedicated researchers, including more than $87.7 million through the ADR program. Some significant recent sponsored findings in Alzheimer's disease have demonstrated that: * Alzheimer’s and low blood sugar in diabetes may trigger a vicious cycle. * Scientists will need to rethink any therapeutic strategies that target the high risk form, called APOE4, to slow amyloid plaque accumulation. * Specialized antibodies have about ten times the ability of a regular antibody to neutralize the toxic clustering of the misfolded Alzheimer's beta-amyloid protein. * A diabetes drug improves memory in Alzheimer’s disease mice. * Preventing or better managing diabetes may prevent cognitive decline. * Alzheimer’s disease may spread by ‘jumping’ from one brain region to another. * Cell energy dysfunction is present early in Alzheimer's, before memory loss. * The $140.3 million figure includes funding throughout BrightFocus' history. The foundation has sought to identify the places where the greatest impact of its donor dollars could be made. As science and society have changed, some programs have been successfully concluded. BrightFocus is proud of the societal impact made by the donors to these programs, and it counts these programs' successes among the organization's achievements. Thus, BrightFocus includes its contributions to these programs in statements regarding the historical impact of the foundation.

Program: Macular Degeneration Research (GuideStar Exchange,
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July 2014)

Budget:
$5,184,479
Category:
Eye Diseases, Blindness & Vision Impairments
Population Served:
Blind and Vision Impaired
General Public/Unspecified
None

Program Description:

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 $15.8 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.

Program Long-Term Success:

Program Short-Term Success:

BrightFocus annually funds groundbreaking research as work continues to find prevention, diagnosis, and treatments for macular degeneration. BrightFocus shares vital information with the public, especially those affected by age-related macular degeneration, through the two websites (www.brightfocus.org and www.ChildrensCorner.org), social media, print publications, and TV and radio public service announcements. BrightFocus offers a toll-free number—1.855.345.6637—for people to ask questions and get real-time assistance. A listing of BrightFocus’s currently funded projects is online at www.brightfocus.org/maculargrants.

Program Success Monitored by:

BrightFocus Foundation evaluates the success of its programs and initiatives in several ways. BrightFocus monitors grant awards throughout the year by evaluating the interim and annual progress reports it requires of each macular degeneration research grantee. These reports are evaluated by BrightFocus’ Scientific Affairs department, with support from the Scientific Review Committee, an external group of esteemed researchers. In addition, BrightFocus staff conducts surveys in the years following the award to identify research successes that may have been publicized following conclusion of the project. This information is compiled and reviewed regularly. Pertinent information gleaned from the oversight process is distributed via BrightFocus eAlerts, web site, social media, and newsletters. Results from the public service announcement (PSA) campaigns are closely watched for six months. Following distribution of the PSA, reports are reviewed to determine how many times a PSA is played and to learn about the audience viewing it, as well as the communities where the PSA is airing. BrightFocus Information Service staff notes the calls and emails generated by the PSAs while responding to the queries they generate. Special events are evaluated through attendance records and post-event surveys that address the participant experience and satisfaction. Public education materials are reviewed and honed by volunteers from the scientific community. Internally, this information is evaluated and improved on the basis of public demand and mission relatedness, and new materials are developed.

Program Success Examples:

To date, BrightFocus Foundation has given $140.3 million* in funds to dedicated researchers, $13.9 million through its MDR program. Promising recent results by earlier BrightFocus grant awardees include: * Researchers discovered seven new genes associated with the risk of advanced age-related macular degeneration. * Targeting cholesterol buildup slowed macular degeneration vision loss in mice. * A chemical "switch" could one day serve as a light-detecting substitute in eyes that have lost their light-detecting retina cells. * Alcohol intake may increase the risk of age-related macular degeneration (AMD). * A new therapeutic target was identified for dry AMD. * Breakthrough findings are increasing our understanding of how dry AMD causes blindness. * The discovery of adult stem cells lying dormant in the retina may lead to future treatments of macular degeneration. * Controlling a protein called IL-18 could prevent progression to later stages of macular degeneration. * The $140.3 million figure includes funding throughout BrightFocus' history. BrightFocus Foundation has sought to identify the places where the greatest impact of its donor dollars could be made. As science and society have changed, some programs have been successfully concluded. BrightFocus is proud of the societal impact made by the donors to these programs, and it counts these programs’ successes among its achievements. Thus, BrightFocus includes its contributions to these programs in statements regarding the historical impact of the foundation.

Program: National Glaucoma Research (GuideStar Exchange,
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July 2014)

Budget:
$2,143,380
Category:
Eye Diseases, Blindness & Vision Impairments
Population Served:
Blind and Vision Impaired
General Public/Unspecified
None

Program Description:

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 $24.2 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 34 biomedical research projects, after awarding 15 grants in 2014.

Program Long-Term Success:

Glaucoma Program Long-Term Success Each year BrightFocus' National Glaucoma Research (NGR) program funds groundbreaking studies aimed at stopping glaucoma. Since the program's inception in 1978, NGR has awarded more than $24.2 million to support basic research into the causes and potential approaches to prevention and treatments of this disease. NGR provides an extensive array of public information for patients and families about glaucoma, including risk factors, preventive lifestyles, treatments, and coping strategies. Materials are available in print and electronically. BrightFocus offers a toll-free number—1.800.345.6647—for people to ask questions and get real-time assistance during regular business hours, Eastern time. 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 globally.

Program Short-Term Success:

Glaucoma Program Short-Term Success BrightFocus' NGR program annually funds groundbreaking research aimed at finding diagnoses, preventions, treatments, and a cure for glaucoma. A listing of BrightFocus' currently funded projects is online at www.brightfocus.org/glaucomagrants. BrightFocus also educates people on the healthy habits that may lower their risk of getting glaucoma. Sharing vital information about glaucoma with the public through the website, print publications, and TV and radio public service announcements, is a primary accomplishment of BrightFocus. The organization reaches millions of people with its outreach efforts.

Program Success Monitored by:

BrightFocus evaluates the success of its programs and initiatives in several ways. The organization monitors grant awards throughout the year by evaluating the interim and annual progress reports it requires of each grantee. These reports are evaluated by BrightFocus's Scientific Affairs department, with support from the Scientific Review Committee, an external group of world renowned researchers. In addition, surveys are conducted in the years following the award to identify research successes that may have been publicized after the conclusion of the project. This information is compiled and reviewed regularly. Pertinent information gleaned from the oversight process is distributed via BrightFocus eAlerts, web site, social media, and newsletters. Results from the public service announcement (PSA) campaigns are closely watched for six months. Following distribution of the PSA, reports are reviewed to determine how many times a PSA is played and to learn about the audience viewing it, as well as the communities where the PSA is airing. BrightFocus Information Service staff notes the calls and emails generated by the PSAs, while responding to the queries they generate. Special events are evaluated through attendance records and post-event surveys that address the participant experience and satisfaction. Public education materials are reviewed and honed by volunteers from the scientific community. Internally, this information is evaluated and improved on the basis of public demand and mission relatedness, and new materials are developed.

Program Success Examples:

To date, BrightFocus has given $140.3 million* in funds to dedicated researchers, $24.2 million of which went to address glaucoma. Research results from BrightFocus-supported studies that could lead to breakthroughs in stopping glaucoma include: * The inhibition of the protein, Grp94, could lead to new treatments for some forms of hereditary glaucoma. * Targeted x-ray treatment provides protection from glaucoma in mice. * A new clue to the origins of glaucoma comes from a protein that blocks eye drainage. * Higher oxygen levels in the eyes of African Americans may help explain glaucoma risk . * Two genetic mutations are linked to normal-pressure glaucoma. * Small episodes of stress to the eyes may actually protect against damage from glaucoma. * Zebrafish may hold the key to repairing serious eye conditions. * The $140.3 million figure includes funding throughout history of the organization. The foundation has sought to identify the places where the greatest impact of its donor dollars could be made. As science and society have changed, some programs have been successfully concluded. BrightFocus is proud of the societal impact made by the donors to these programs, and it counts these programs' successes among the achievements of the organization. Thus, BrightFocus includes its contributions to these programs in statements regarding the historical impact of the foundation.
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Impact Summary from the Nonprofit

BrightFocus Foundation is one of America's leading supporters of early-stage scientific investigations to better understand and find ways to diagnose, prevent, treat, and end brain and eye diseases. They currently focus on Alzheimer's disease, age-related macular degeneration, and glaucoma. To date more than $140.3 million in research grants have been awarded to some of the most promising scientists at universities, hospitals, and medical centers around the world. BrightFocus grants have supported more than 1,000 innovative projects and more than 3,200 scientists who have dedicated their careers to ending these dreaded diseases BrightFocus grants offer seed money for budding ideas. 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 the organization’s inception in 1973, their grants have catalyzed more than a billion dollars in research worldwide. A survey of all scientific reports developed through their grants showed that the research findings resulting from studies they 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.
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