Foundation Fighting Blindness Inc

Organization Overview

Foundation Fighting Blindness Inc is located in Columbia, MD. The organization was established in 1973. According to its NTEE Classification (H41) the organization is classified as: Eye Diseases, Blindness & Vision Impairments Research, under the broad grouping of Medical Research and related organizations. As of 06/2023, Foundation Fighting Blindness Inc employed 67 individuals. This organization is a parent organization of an affiliated group for tax-exemption purposes. Foundation Fighting Blindness Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 06/2023, Foundation Fighting Blindness Inc generated $30.4m in total revenue. This represents a relatively dramatic decline in revenue. Over the past 8 years, the organization has seen revenues fall by an average of (10.2%) each year. All expenses for the organization totaled $51.3m during the year ending 06/2023. You can explore the organizations financials more deeply in the financial statements section below.

Since 2015, Foundation Fighting Blindness Inc has awarded 335 individual grants totaling $153,540,564. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990T Filing

TAX YEAR

2023

Describe the Organization's Mission:

Part 3 - Line 1

THE URGENT MISSION OF THE FOUNDATION FIGHTING BLINDNESS IS TO DRIVE THE RESEARCH THAT WILL PROVIDE PREVENTIONS, TREATMENTS AND CURES FOR PEOPLE AFFECTED BY RETINITIS PIGMENTOSA, AGE-RELATED MACULAR DEGENERATION, USHER SYNDROME AND THE ENTIRE SPECTRUM OF RETINAL DEGENERATIVE DISEASES. THE FOUNDATION IS A BEACON FOR THOSE AFFECTED BY THESE BLINDING DISEASES.

Describe the Organization's Program Activity:

RESEARCH: THE FOUNDATION FIGHTING BLINDNESS, INC. (THE FOUNDATION) FUNDED RESEARCHERS ARE ACHIEVING REMARKABLE SUCCESS IN DISCOVERING, TESTING AND DELIVERING TO PATIENTS A WIDE RANGE OF PROMISING THERAPIES TO PREVENT, STOP THE PROGRESSION OF, AND CURE BLINDNESS DUE TO RETINAL DEGENERATIVE DISEASES. THE FOUNDATION HAS ENCUMBRANCES OF $50 MILLION, NOT INCLUDED ON OUR JUNE 30 FINANCIAL REPORT, FOR ACTIVE RESEARCH PROJECTS THAT HAVE FUTURE RESEARCH MILESTONES. OUR RESEARCH OVERSIGHT COMMITTEE'S SPENDING PLAN INCLUDES SPENDING AT AN AVERAGE OF $21 MILLION ANNUALLY TO SUPPORT FUTURE RESEARCH.AS OF THE END OF OUR FISCAL YEAR 2023, THE FOUNDATION'S RESEARCH GRANTS PROGRAM IS FUNDING 93 GRANTS BEING CONDUCTED BY MORE THAN 96 INVESTIGATORS AT 71 INSTITUTIONS, EYE HOSPITALS AND UNIVERSITIES IN THE U.S. AND AROUND THE WORLD. A SAMPLING OF THE RESEARCH PROJECTS FUNDED ARE LISTED BELOW."EVALUATING MITIGATION STRATEGIES FOR INTRAVITREAL VIRAL VECTOR-MEDIATED INFLAMMATION ACROSS ANIMAL MODELS."KATHRYN PEPPLE, MD, PHD, UNIVERSITY OF WASHINGTONDR. PEPPLE IS INVESTIGATING NOVEL STRATEGIES FOR MITIGATING OCULAR INFLAMMATION WHICH CAN RESULT FROM INTRAVITREAL INJECTION OF VIRAL GENE THERAPIES. SHE IS EVALUATING ANIMAL MODEL DATA AND PERFORMING DETAILED IMMUNOLOGIC CHARACTERIZATION OF THE NON-HUMAN PRIMATE EYES DURING OCULAR INFLAMMATION TO PROVIDE CLINICAL-PATHOLOGIC CORRELATIONS AND BIOMARKER VALIDATION FOR USE IN HUMAN CLINICAL STUDIES. A ROBUST AND EVIDENCE-BASED APPROACH TO PREVENTING OCULAR INFLAMMATION FOLLOWING INTRAVITREAL ADENO-ASSOCIATED VIRUS (AAV)-MEDIATED GENE THERAPY IS A CRITICAL UNMET NEED."A NOVEL, RATIONALLY DESIGNED PHARMACOLOGICAL APPROACH TO COUNTERING VISION LOSS IN A PRECLINICAL MODEL OF MERTK-ASSOCIATED RETINITIS PIGMENTOSA."SILVIA FINNEMANN, PHD, FORDHAM UNIVERSITYDR. FINNEMANN AND HER TEAM ARE DETERMINING IF AN EARLY-ONSET INFLAMMATORY RESPONSE IN RETINAL PIGMENT EPITHELIAL (RPE) CELLS PRECEDES PHOTORECEPTOR DEGENERATION. RPE CELLS PROVIDE PROVIDE CRITICAL SUPPORT FOR PHOTORECEPTORS. IF SUCCESSFUL IN UNCOVERING THIS NOVEL DISEASE PATHWAY, A THERAPEUTIC STRATEGY TESTING ANTI-INFLAMMATORY DRUGS FOR MERTK-ASSOCIATED RETINITIS PIGMENTOSA WILL BE PROPOSED TO PREVENT OR SIGNIFICANTLY DELAY RETINAL DEGENERATION."DECIPHERING THE IMPACT OF ABCA4 GENETIC VARIANTS OF UNKNOWN SIGNIFICANCE IN INHERITED RETINAL DISEASE PROGNOSIS."ESTHER BISWAS-FISS, MS, PHD, UNIVERSITY OF DELAWAREDR. BISWAS-FISS IS USING COMPUTATIONAL MODELING AND EXPERIMENTS TO DETERMINE WHETHER ABCA4 VARIANTS OF UNKNOWN SIGNIFICANCE (VUSS) LEAD TO ABCA4-RELATED DISEASE. RESOLVING THESE VUSS IS CRITICAL FOR PATIENTS TO MEET INCLUSION CRITERIA IN CLINICAL TRIALS FOR ABCA4 THERAPIES. MUTATIONS IN ABCA4 CAUSE THE VAST MAJORITY OF STARGARDT DISEASE CASES.


PUBLIC HEALTH EDUCATION:DURING FISCAL YEAR 2023, THROUGH OUR CHATLOS FOUNDATION PUBLIC EDUCATION PROGRAM, THE FOUNDATION AIMED TO CONTINUE TO PROVIDE EDUCATION AND SUPPORT TO PEOPLE AFFECTED BY RETINAL DEGENERATIVE DISEASES. THE FOUNDATION ALSO FIELDS A TEAM OF PROFESSIONALS FOCUSED ON EDUCATING OPHTHALMOLOGISTS AND OPTOMETRISTS ON THE LATEST ADVANCEMENTS WITH THE FOUNDATIONS RESOURCES AND RESEARCH ON THE INHERITED RETINAL DISEASE SPACE. TO KEEP OUR CONSTITUENTS AND PROFESSIONALS INFORMED, THE FOUNDATION PUBLISHES EXTENSIVE CONTENT VIA WEBSITE AND SOCIAL MEDIA/EMAIL CHANNELS; DISTRIBUTES A NEWSLETTER ONLINE AND IN PRINT; HOLDS QUARTERLY INSIGHTS FORUM CALLS TO INFORM THE COMMUNITY ABOUT SCIENTIFIC PROGRESS. THE CONTENT PRODUCED INCLUDES THE LATEST DEVELOPMENTS IN RESEARCH AND CLINICAL TRIALS, AND PERSONAL STORIES FROM MEMBERS OF THE FIGHTING BLINDNESS COMMUNITY. ADDITIONALLY, THE FOUNDATION HOLDS CONTINUING MEDICAL EDUCATION COURSES TWICE A YEAR, FOCUSED ON PROVIDING TIMELY CONTENT TO EYECARE PROFESSIONALS. CHAPTERS BRING THE FOUNDATION'S MESSAGE AND MISSION TO LIFE. IN FY23 THE FOUNDATION SUPPORTED OVER 45 VOLUNTEER-LED CHAPTERS IN 23 STATES. THE CHAPTERS HELD 80 IN-PERSON SPEAKER PRESENTATIONS, SOCIALS, AND OTHER OUTREACH ACTIVITIES, HOSTED 4 VISION SEMINARS, AND CO-HOSTED TWO VIRTUAL VISION WEBINARS WITH THE FOUNDATION WITH OVER 1,000 PEOPLE IN ATTENDANCE FOR EACH WEBINAR. THIS YEAR, THE CHAPTERS ARE HOSTING NEARLY 90 IN-PERSON SPEAKER PRESENTATIONS AND LAUNCHING SEVERAL NEW CHAPTERS IN NEW STATES.


MY RETINA TRACKER REGISTRY:THE FOUNDATION MAINTAINS A RESEARCH DATABASE OF PEOPLE AND FAMILIES AFFECTED BY RARE INHERITED RETINAL DEGENERATIVE DISEASES. THE REGISTRY IS DESIGNED TO SHARE DE-IDENTIFIED INFORMATION WITHIN THE IRD RESEARCH AND CLINICAL COMMUNITIES ABOUT PEOPLE WITH AN INHERITED RETINAL DISEASE TO HELP ACCELERATE THE DISCOVERY OF TREATMENTS AND CURES. DURING FISCAL YEAR 2023 APPROXIMATELY 3,344 ADDITIONAL MEMBERS WERE ADDED TO THE REGISTRY, BRINGING TOTAL REGISTERED INDIVIDUALS UP TO 25,160.


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Board, Officers & Key Employees

Name (title)Compensation
David Brint
Chairman Of The Board
$0
Edward Russnow
Vice Chair, Development
$0
Jonathan Steinberg MD
Vice Chair, Research
$0
Karen Petrou
Vice Chair, At Large
$0
Maryrose Sylvester
Vice Chair, At Large
$0
Steven Alper
Interim Vice Chair, Development
$0

Outside Vendors & Contractors

Vendor Name (Service)Compensation
Disney Destination Llc
Venue For Visions 2022 Conference
$432,161
Fuse Fundraising Group Llc
Direct Marketing Consultant
$552,985
The Ritz-carlton Half Moon Bay
Venue For Investing In Cures Summit/bod
$302,046
Contemporary Productions Llc
Entertainment For Fundraising Events
$275,303
Gaskill Strategies Llc
Fund Raising Campaign Consultants
$231,785
View All Vendors

Financial Statements

Statement of Revenue
Federated campaigns$150,166
Membership dues$0
Fundraising events$6,643,082
Related organizations$400,000
Government grants $469,439
All other contributions, gifts, grants, and similar amounts not included above$21,238,817
Noncash contributions included in lines 1a–1f $7,511,241
Total Revenue from Contributions, Gifts, Grants & Similar$28,901,504
Total Program Service Revenue$457,678
Investment income $3,426,537
Tax Exempt Bond Proceeds $0
Royalties $63,569
Net Rental Income $29,767
Net Gain/Loss on Asset Sales -$2,079,772
Net Income from Fundraising Events -$361,579
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $112
Miscellaneous Revenue$0
Total Revenue $30,437,892

Grants Awarded

Over the last fiscal year, Foundation Fighting Blindness Inc has awarded $24,421,364 in support to 28 organizations.

Grant RecipientAmount

BAYLOR COLLEGE OF MEDICINE

PURPOSE: RESEARCH

$499,940

BIOJIVA

PURPOSE: RESEARCH

$464,216

COLUMBIA UNIVERSITY

PURPOSE: RESEARCH

$896,691

DUKE UNIVERSITY MEDICAL CENTER

PURPOSE: RESEARCH

$600,000

EMORY UNIVERSITY

PURPOSE: RESEARCH

$75,000

FORDHAM UNIVERSITY

PURPOSE: RESEARCH

$480,030
View Grant Profile

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