Foundation Fighting Blindness, Inc. HQ
We are driving research to find cures for blinding retinal degenerative diseases.
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Health Care
FFB-funded scientists perform research in a variety of areas including: genetic discovery, gene therapy, cellular and molecular biology, nutrition, and retinal prosthetics. The Foundation's Scientific Advisory Board, leaders in retinal disease science and research, provide oversight and guidance for the research program. FFB, working in tandem with its support organization Foundation Fighting Blindness RD Fund, has formed partnerships with governmental agencies, pharmaceutical and biotechnology companies, and academic institutions to accelerate the development of preventions, treatments, and cures for retinal degenerative diseases.
VisionWalk
Since its inception in the Spring of 2006, VisionWalk has raised over $60 million to fund sight-saving research. As promising treatments move into critical human studies, the need for research funding is greater than ever.
Join the tens of thousands of people who have taken important steps toward a cure by participating in a 5K VisionWalk. Find a Walk near you and register today!
Visions Seminars
The Vision Seminar series provides a supportive learning environment for people living with macular degeneration, retinitis pigmentosa, and other inherited retinal degenerative diseases. Held around the country, each half-day seminar offers a forum to hear from prominent doctors and scientists about the latest retinal degenerative disease research, and new treatments, therapies, and clinical trials. Vision Seminars not only give affected individuals and their families critical information on research and treatments, but they also provide the hope necessary in coping with these debilitating diseases. Don’t miss the opportunity to learn, meet new friends, and visit with local vendors showcasing the latest low vision products and services.
VISIONS Conference
Biennial Foundation Fighting Blindness VISIONS Conference
Where we work
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of unique website visitors
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of website pageviews
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Average online donation
This metric is no longer tracked.Totals By Year
Type of Metric
Other - describing something else
Direction of Success
Increasing
Total number of grants awarded
This metric is no longer tracked.Totals By Year
Related Program
Health Care
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
Related Program
Health Care
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The Foundation Fighting Blindness (FFB) is a private non-profit organization which – by soliciting donations from individual donors, corporations, government agencies and non-profits – funds cutting-edge research aimed at providing preventions, treatments and cures for blinding retinal diseases affecting more than 10 million Americans alone.
FFB accomplishes this mission by maintaining a Research Grants Program which, over almost five decades, has facilitated scores of research advances, including a sight-restoring treatment now in clinical, or human, trials. The Foundation currently funds or had a hand in facilitating 40 clinical trials and intends to eradicate blindness due to retinal diseases by adhering to the following measures:
• Research: Since its inception, in 1971, FFB has raised more than $891 million for research that has pinpointed the primary causes of retinal diseases and laid the foundation for treatments now being tested in clinical trials.
• Public Education: FFB raises public awareness about retinal diseases through events, seminars and the media and addresses the needs of those living with retinal diseases by providing information on research and low vision aids and services.
What are the organization's key strategies for making this happen?
Medical research is costly, particularly now, when the Foundation's five decades' worth of investments is paying off, with promising treatments being readied for evaluation in clinical trials, each costing tens of millions of dollars and subject to regulatory oversight by the U.S. Food and Drug Administration. FFB leverages its experience, expertise and partnerships with its members and leading retinal disease researchers to: a) raise funds through events, membership drives, planned giving and one-on-one queries; and b) invest in the most promising research. Our strategies include:
Research
• Recruiting and training promising medical students, researchers and faculty with career development grants so that they can pursue careers in retinal disease research.
• Facilitating collaborations that cross disciplinary, institutional and geographic boundaries through research center grants, which support research likely to accelerate the development of treatments and cures.
• Attracting individual investigator grant applicants from a worldwide pool of scientists who potentially bring new ideas, perspectives and expertise to retinal disease research; and providing qualified, independent scientists with investigator research grants.
Public Education
• Providing comprehensive patient-focused materials, including information on the symptoms, progression and available preventions and/or treatments for various retinal degenerative diseases, free of charge to individuals who request them via phone, mail or email.
• Sharing basic information, research news and stories about the impact of retinal diseases and research via print and online newsletters, emails, the Foundation's website and blog and internet social-media sites, such as Facebook and Twitter.
• Promoting FFB's impact by supplying print, internet, TV and radio media with stories and public service announcements.
• Training and utilizing our nationwide network of 41 chapters to provide those affected by retinal diseases with support, resources and vital information.
• Hosting public health education events and meetings during which information about FFB and retinal research is disseminated.
What are the organization's capabilities for doing this?
Since its establishment in 1971, the Foundation has raised more than $891 million and become the world's premier non-governmental funder of retinal disease research.
On an annual basis, the Foundation Fighting Blindness and the Foundation’s Clinical Research Institute fund more than 81 research grants. The research projects are conducted by more than 105 research investigators at 70 institutions, eye hospitals, and universities in the United States. The Foundation funding extends internationally to laboratories in Australia, Belgium, Brazil, Canada, Denmark, England, Finland, France, Germany, Israel, Italy, Mexico, the Netherlands, Poland, and Switzerland.
There are 26 members on FFB's board of directors as well as 115 national trustees, and its Scientific Advisory Board consists of more than 40 renowned retinal experts. FFB has a network of 41 chapters serving the visually impaired in metropolitan areas nationwide, and its work is facilitated by a 50-person staff based in Alabama, California, Colorado, Florida, Illinois, Minnesota, Missouri, New York, and North Carolina, and at its national headquarters in Maryland. They are aided by thousands of volunteers nationwide.
FFB also has:
• The support of corporate sponsors and partners, the National Institutes of Health and generous individual donors.
• A passionate membership network raising awareness and funds locally, regionally and nationally via chapter meetings; more than 50 5K VisionWalks nationwide; 20-plus “Dining in the Dark" events; and traditional and social media events.
• The Partners for Retinal Health program, through which FFB is promoted and supported by retinal specialists and practices nationwide.
What have they accomplished so far and what's next?
Foundation's early investment in LUXTURNA™ boosts vision-restoring treatment for people with RPE65 mutations and will help advance other gene therapies currently in development.
In December 2017, LUXTURNA™ became the first FDA-approved gene therapy for the eye or any inherited condition.
Children and young adults who were born with severe vision loss from Leber congenital amaurosis and retinitis pigmentosa (RPE65 mutations) are putting away their navigational canes and seeing the faces of their parents for the first time after receiving the landmark treatment.
Developed by Spark Therapeutics and Children’s Hospital of Philadelphia, LUXTURNA™ was made possible by the Foundation’s $10 million investment in critical lab studies, including the pioneering research of gene-therapy visionary Dr. Jean Bennett.
Today, dozens of promising gene therapies for inherited retinal diseases are in clinical trials.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify bright spots and enhance positive service experiences, 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
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Which of the following feedback practices does your organization routinely carry out?
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 engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive
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What challenges does the organization face when collecting feedback?
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
SubscribeBuild 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.
Connect with nonprofit leaders
SubscribeBuild 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.
Foundation Fighting Blindness, Inc.
Board of directorsas of 12/21/2022
Mr David Brint
Brinshore Development
Term: 2016 -
Haynes Lea
Edward Russnow
David Brint
Joel Davis
Yvonne Chester
Evan Mittman
Karen Petrou
Steve Alper
William Carty
Jason Ferreira
Robert Heidenberg
Janni Lehrer-Stein
Johathan Steinberg
Maryrose Sylvester
Warren Thaler
Scott Burt
Darren DeVoue
Gordon Gund
Chairman Emeritus
Bradford Manning
Jason Morris
Jeffrey Freed
Adrienne Graves
Laura Manfre
David Nixon
Martha Steele
Robert Finzi
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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
Gender identity
Transgender Identity
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 12/21/2022GuideStar 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
- 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 analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- 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 engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.