2023-11-02T15:10:21-05:00 2023-06-30 420714325 RSM US LLP 100 INTERNATIONAL DRIVE SUITE 1400 BALTIMORE MD 21202 990 2022-07-01 237135845 THE FOUNDATION FIGHTING BLINDNESS INC FOUN 4104230600 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 PETER GINSBERG CHIEF OPERATING OFFICER 4104230600 2023-11-01 1 PETER GINSBERG 999009999 0 JULIA FLANNERY CPA P00928915 4102469301 2023-11-01 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z JASON MENZO 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 119223972 0 X WWW.FIGHTINGBLINDNESS.ORG X 1971 MD 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. 26 26 67 2500 112 0 39734129 28901504 618587 457678 2342428 1346765 192692 -268055 42887836 30437892 27487814 27872429 0 0 8006904 8954322 808586 605928 7026718 12872305 13832761 49175609 51265440 -6287773 -20827548 145877854 130891355 24415527 30670536 121462327 100220819 X THE MISSION OF THE FOUNDATION FIGHTING BLINDNESS, INC. (FOUNDATION) IS TO DRIVE THE RESEARCH THAT WILL PROVIDE PREVENTIONS, TREATMENTS AND CURES, FOR PEOPLE AFFECTED BY RETINITIS PIGMENTOSA, MACULAR DEGENERATION, USHER SYNDROME, AND THE SPECTRUM OF RETINAL DEGENERATIVE DISEASES. 0 0 35798068 27872429 457678 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. 2782316 0 0 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. 2794276 0 0 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. 41374660 1 1 0 1 0 0 0 0 0 1 1 0 0 1 1 1 0 1 0 0 1 1 0 1 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 1 0 0 1 252 0 1 67 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 26 26 0 0 1 0 1 1 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AK AR CA CO CT FL GA HI KS IL IN MA ME MD MI MN MS NH NJ NM NY NC OH OK OR PA SC TN UT VA WA WV WI AZ X X PETER GINSBERG 4104230600 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 X DAVID BRINT CHAIRMAN OF THE BOARD 10.00 1.00 X X 0 0 0 EDWARD RUSSNOW VICE CHAIR, DEVELOPMENT 1.00 X X 0 0 0 JONATHAN STEINBERG MD VICE CHAIR, RESEARCH 1.00 1.00 X X 0 0 0 KAREN PETROU VICE CHAIR, AT LARGE 1.00 X X 0 0 0 MARYROSE SYLVESTER VICE CHAIR, AT LARGE 1.00 X X 0 0 0 STEVEN ALPER INTERIM VICE CHAIR, DEVELOPMENT 1.00 X X 0 0 0 JASON MORRIS VICE CHAIR, BOARD COMM & DEVELOPMENT AND TREASURER 1.00 X X 0 0 0 BRADFORD MANNING VICE CHAIR, MARKETING, COMM & SOCIAL MEDIA 1.00 X X 0 0 0 HAYNES LEA SECRETARY 1.00 X X 0 0 0 GORDON GUND DIRECTOR - CHAIRMAN EMERITUS 1.00 X X 0 0 0 SCOTT BURT DIRECTOR 1.00 X 0 0 0 WILLIAM CARTY DIRECTOR 1.00 X 0 0 0 YVONNE CHESTER DIRECTOR 1.00 X 0 0 0 JOEL DAVIS DIRECTOR 1.00 X 0 0 0 DARREN DEVOUE DIRECTOR 1.00 X 0 0 0 JASON FERREIRA DIRECTOR 1.00 X 0 0 0 ROBERT FINZI DIRECTOR 1.00 X 0 0 0 JEFFREY FREED DIRECTOR 1.00 X 0 0 0 ADRIENNE GRAVES PH D DIRECTOR 1.00 1.00 X 0 0 0 ROBERT HEIDENBERG DIRECTOR 1.00 X 0 0 0 JANICE LEHRER-STEIN DIRECTOR 1.00 X 0 0 0 MARSHA LINK PHD DIRECTOR 1.00 X 0 0 0 LAURA MANFRE DIRECTOR 1.00 X 0 0 0 EVAN MITTMAN DIRECTOR 1.00 X 0 0 0 DAVID NIXON DIRECTOR 1.00 X 0 0 0 WARREN THALER DIRECTOR 1.00 1.00 X 0 0 0 BENJAMIN R YERXA CEO (THRU 7/1/22) 26.00 14.00 X 248524 331190 42458 JASON D MENZO CEO (BEG 7/1/22) 32.00 8.00 X 367118 91780 64129 RICHELE DONAT CHRO 40.00 X 261155 0 28752 PETER GINSBERG COO 32.00 8.00 X 264095 66023 59015 CLAIRE GELFMAN CHIEF SCIENTIFIC OFFICER 40.00 X 363370 0 56491 JUDY L TAYLOR SVP, CHIEF DEVELOPMENT OFFICER 40.00 X 198073 0 54237 MICHELE C DIVINCENZO VP, EVENTS 40.00 X 185979 0 35462 RUSSELL W KELLEY MANAGING DIRECTOR, RD FUND 0.00 40.00 X 0 280543 59290 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 40.00 X 246371 0 33390 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 40.00 X 182079 0 46456 AMY M PALMER LASTER SVP, SCIENCE STRATEGY & AWARDS 40.00 X 197800 0 13897 JEFFRY C COLLINS VP, DATABASE SYSTEMS & TECHNOLOGY 40.00 X 177155 0 37789 CHAD R JACKSON SR DIR, PRE-CLINICAL TRANSLATIONAL PROG 40.00 X 180733 0 14971 ANNA WAGNER VP, FINANCE 40.00 X 166817 0 12093 3039269 769536 558430 19 0 1 0 FUSE FUNDRAISING GROUP LLC 12355 SUNRISE VALLEY DRIVE SUITE 2 RESTON VA 20191 DIRECT MARKETING CONSULTANT 552985 DISNEY DESTINATION LLC PO BOX 10000 LAKE BUENA VISTA FL 32830 VENUE FOR VISIONS 2022 CONFERENCE 432161 THE RITZ-CARLTON HALF MOON BAY ONE MIRAMONTES POINT ROAD HALF MOON BAY CA 94019 VENUE FOR INVESTING IN CURES SUMMIT/BOD 302046 CONTEMPORARY PRODUCTIONS LLC 190 CARONDELET PLAZA SUITE 1111 SAINT LOUIS MO 63105 ENTERTAINMENT FOR FUNDRAISING EVENTS 275303 GASKILL STRATEGIES LLC 1759 CENTRAL AVENUE MEMPHIS TN 38173 FUND RAISING CAMPAIGN CONSULTANTS 231785 16 150166 6643082 400000 469439 21238817 7511241 28901504 CONTRACT REVENUE 900099 395548 395548 PROGRAM FEES 900099 62130 62130 457678 3426537 3426537 63569 63569 29767 0 29767 29767 29767 85421835 87501607 -2079772 -2079772 -2079772 919261 6643082 1280840 -361579 -361579 3745 3633 112 112 OTHER INCOME 900099 76 76 76 30437892 457678 112 1078598 24421364 24421364 3451065 3451065 2486009 1233642 548870 703497 4864908 1499518 705719 2659671 319399 113708 54951 150740 773911 281723 101058 391130 510095 182939 84054 243102 1720285 1297548 212072 210665 40836 4158 36678 65695 59668 6027 260000 200000 60000 605928 605928 257252 233623 23629 380117 197229 182888 404212 106924 66215 231073 493460 25161 118204 350095 146857 31967 65737 49153 431825 176558 80024 175243 1428257 756068 286471 385718 112060 87482 2723 21855 207391 111170 21934 74287 TRIAL RELATED COSTS 7063325 7063325 PROF FUNDRAISING-OTHER 302369 302369 PRINTING & PRODUCTION 252055 133111 29127 89817 266765 156934 109831 51265440 41374660 2864062 7026718 1176123 4523190 11369807 3113386 23016606 19463729 508713 541936 14144 16821 567589 774207 4585834 3914834 723640 671000 100553457 93775426 7947775 8011660 145877854 130891355 1790153 1993845 15215025 20414511 210498 442676 7199851 7819504 24415527 30670536 X 27462127 19019760 94000200 81201059 121462327 100220819 145877854 130891355 X -20827548 -77967 -351056 15063 X 0 1 X 1 0 X 50471319 31895116 27741201 39734129 28901504 178743269 50471319 31895116 27741201 39734129 28901504 178743269 59536132 119207137 5503900 5325536 4394213 4142169 3519873 22885691 867745 358160 130714 1099664 919337 3375620 205004580 1693592 0.58150 0.60150 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: FFB RD FUND SERVICE FEES - 2018 AMOUNT: $ 100,000. 2019 AMOUNT: $ 100,000. 2020 AMOUNT: $ 30,500. MISCELLANEOUS - 2018 AMOUNT: $ 82. 2019 AMOUNT: $ 71. 2020 AMOUNT: $ 14. 2021 AMOUNT: $ 65. 2022 AMOUNT: $ 76. FUNDRAISING EVENTS - 2018 AMOUNT: $ 767,663. 2019 AMOUNT: $ 258,089. 2020 AMOUNT: $ 100,200. 2021 AMOUNT: $ 349,599. 2022 AMOUNT: $ 919,261. SETTLEMENT INCOME - 2021 AMOUNT: $ 750,000. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 260000 260000 51368861 51628861 1000000 250000 0 0 1000000 1000000 1500000 260000 260000 250000 250000 375000 3634618 398570 4033188 4200522 -565904 3634618 3422374 939020 145067 15805 4200522 3381828 137702 83399 13757 3422374 3256748 208731 74246 9405 3381828 1.00000 0 0 1008404 942289 66115 3577430 2972545 604885 671000 BENEFICIAL INTERESTS IN REMAINDER TRUSTS 7180648 CHARITABLE GIFT ANNUITY 831012 8011660 CHARITABLE GIFT ANNUITY OBLIGATION 580618 DEFERRED RENT 680 DUE TO RELATED PARTY 7238206 7819504 X 25986193 -77967 57314 -4197423 -4218076 30204269 233623 233623 30437892 45442108 57314 351056 -5983016 -5574646 51016754 233623 15063 248686 51265440 PART V, LINE 4: EARNINGS CAN BE USED FOR OPERATIONS; PRINCIPAL IS DONOR RESTRICTED. PART X, LINE 2: THE ORGANIZATION PERFORMED AN EVALUATION OF ITS UNCERTAINTY IN INCOME TAX FOR THE YEARS ENDED JUNE 30, 2023 AND 2022, AND DETERMINED THAT THERE WERE NO MATTERS THAT WOULD REQUIRE RECOGNITION IN THE CONSOLIDATED FINANCIAL STATEMENTS OR THAT MAY HAVE ANY EFFECT ON ITS TAX-EXEMPT STATUS. THE ORGANIZATION FOLLOWS THE ACCOUNTING STANDARD ON ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES, WHICH ADDRESSES THE DETERMINATION OF WHETHER TAX BENEFITS CLAIMED OR EXPECTED TO BE CLAIMED ON A TAX RETURN SHOULD BE RECORDED IN THE CONSOLIDATED FINANCIAL STATEMENTS. UNDER THIS POLICY, THE ORGANIZATION MAY RECOGNIZE THE TAX BENEFIT FROM AN UNCERTAIN TAX POSITION ONLY IF IT IS MORE LIKELY THAN NOT THAT THE TAX POSITION WOULD BE SUSTAINED ON EXAMINATION BY TAXING AUTHORITIES, BASED ON THE TECHNICAL MERITS OF THE POSITION. MANAGEMENT HAS EVALUATED THE ORGANIZATION'S TAX POSITIONS AND HAS CONCLUDED THAT THE ORGANIZATION HAS TAKEN NO UNCERTAIN TAX POSITIONS THAT REQUIRE ADJUSTMENT TO THE CONSOLIDATED FINANCIAL STATEMENTS TO COMPLY WITH PROVISIONS OF THIS GUIDANCE. THE ORGANIZATION IS NO LONGER SUBJECT TO INCOME TAX EXAMINATIONS FOR THE U.S. FEDERAL, STATE OR LOCAL TAX AUTHORITIES FOR YEARS BEFORE JUNE 30, 2020. PART XI, LINE 2D - OTHER ADJUSTMENTS: REVENUE FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 3,046,192. ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS -7,243,615. PART XII, LINE 2D - OTHER ADJUSTMENTS: EXPENSES FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 9,337,258. ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS -15,320,274. PART XII, LINE 4B - OTHER ADJUSTMENTS: GRANT REFUNDS 15,063. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTMAKING 2929785 NORTH AMERICA 0 0 GRANTMAKING 75000 MIDDLE EAST AND NORTH AFRICA 0 0 GRANTMAKING 446280 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 PROGRAM SERVICES TRAVEL 16230 0 0 0 0 0 0 3467295 0 3467295 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 528407 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 294518 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 100000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 548360 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 622000 WIRE 0 MIDDLE EAST AND NORTH AFRICA RESEARCH GRANT 446280 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 200000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 65000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 371500 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 100000 WIRE 0 NORTH AMERICA RESEARCH GRANT 75000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 100000 WIRE 0 11 1 0 0 0 0 0 0 PART I, LINE 2: EACH GRANTEE IS REQUIRED TO SUBMIT A YEARLY SCIENTIFIC PROGRESS REPORT, WHICH IS REVIEWED BY THE FFB SCIENCE STAFF AND COMPARED WITH THE PROPOSED MILESTONES SUBMITTED WITH THE ORIGINAL GRANT APPLICATION. ATTENTION IS ALSO GIVEN TO THE PLAN FOR EXPERIMENTS TO BE PERFORMED IN THE COMING YEAR. ANY PROBLEMS OR ISSUES IDENTIFIED BY THE GRANTEE AND/OR FFB SCIENTIFIC STAFF ARE RESOLVED TO OUR MUTUAL SATISFACTION; HOWEVER, IF A CONSENSUS CANNOT BE REACHED OR IF THE APPARENT PROGRESS IS NOT SATISFACTORY IN THE OPINION OF FFB SCIENTIFIC STAFF, AFTER CONSULTATION WITH MEMBERS OF THE FFB SCIENTIFIC ADVISORY BOARD, THE GRANT IS TERMINATED WITH A SHORT PHASE OUT PERIOD. EACH GRANTEE IS REQUIRED TO SUBMIT A YEARLY FINANCIAL REPORT DETAILING GRANT EXPENDITURES ACCORDING TO THEIR FFB APPROVED GRANT BUDGET. SCIENCE STAFF REVIEW EACH FINANCIAL REPORT FOR ADHERENCE TO BUDGETED EXPENDITURES IN EACH CATEGORY. WITH PROPER DOCUMENTATION AND IF DETERMINED APPROPRIATE, REQUESTS FOR CARRYOVER OF UNEXPENDED FUNDS TO THE NEXT FISCAL YEAR ARE REVIEWED AND APPROVED ON A CASE-BY-CASE BASIS. PART III ACCOUNTING METHOD: X X X X X X 1 FUSE FUNDRAISING GROUP LLC 12355 SUNRISE VALLEY DRIVE RESTON VA 20191 FUNDRAISING COUNSEL 0 1084434 609094 475340 GASKILL STRATEGIES LLC 1759 CENTRAL AVE MEMPHIS TN 38104 FUNDRAISING COUNSEL 0 0 121925 -121924 RED DELUXE PO BOX 3350 MEMPHIS TN 38173 FUNDRAISING COUNSEL 0 0 177278 -177278 1084434 908297 176138 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY NIGHT FOR SIGHT NYC 883937 643122 240815 136240 19500 98519 VISIONWALK - NEW YORK 391012 391012 64 6287394 5608948 678446 315689 210135 199318 301439 7562343 6643082 919261 451929 210135 218818 399958 1280840 -361579 1 BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 501(C)(3) 499940 0 RESEARCH BIOJIVA 4300 EL CAMINO REAL SUITE 201 LOS ALTOS CA 94022 883372722 464216 0 RESEARCH COLUMBIA UNIVERSITY 635 WEST 165TH STREET NEW YORK NY 10032 135598093 501(C)(3) 896691 0 RESEARCH DUKE UNIVERSITY MEDICAL CENTER 2200 W MAINE STREET DURHAM NC 27705 560532129 501(C)(3) 600000 0 RESEARCH EMORY UNIVERSITY 1559 CLIFTON ROAD ATLANTA GA 30322 580566256 501(C)(3) 75000 0 RESEARCH FORDHAM UNIVERSITY 441 FORDHAM ROAD BRONX NY 10458 131740451 501(C)(3) 480030 0 RESEARCH FOUNDATION FIGHTING BLINDNESS RD FUND 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 450524687 501(C)(3) 14920274 0 RESEARCH FOUNDATION FOR THE NIH 11400 ROCKVILLE PIKE SUITE 600 NORTH BETHESDA MD 20852 521986675 501(C)(3) 25000 0 RESEARCH JACKSON LABORATORY 600 MAIN STREET BAR HARBOR ME 04609 010211513 501(C)(3) 181355 0 RESEARCH JOHNS HOPKINS UNIVERSITY 600 NORTH WOLFE STREET BALTIMORE MD 21287 520595110 501(C)(3) 75000 0 RESEARCH MASSACHUSETTS EYE AND EAR INFIRMARY 243 CHARLES STREET BOSTON MA 02114 042103591 501(C)(3) 775000 0 RESEARCH MEDICAL UNIVERSITY SOUTH CAROLINA 19 HAGOOD AVENUE CHARLESTON SC 29425 576028985 501(C)(3) 140433 0 RESEARCH MICHIGAN STATE UNIVERSITY 736 WILSON ROAD D208 EAST LANSING MI 48823 386005987 501(C)(3) 265908 0 RESEARCH MITOCHEM THERAPEUTICS INC 17C FRANKLIN STREET CHARLESTON SC 29401 453845208 300000 0 RESEARCH OREGON HEALTH AND SCIENCE UNIVERSITY 3375 TERWILLIGER BOULEVARD SW PORTLAND OR 97201 237083114 501(C)(3) 1042192 0 RESEARCH UNIVERSITY HOSPITALS UH GRANTS DEPT 781686 PO BOX 78000 DETROIT MI 48278 341567805 501(C)(3) 118500 0 RESEARCH UNIVERSITY OF ALABAMA AT BIRMINGHAM 1670 UNIVERSITY BLVD BIRMINGHAM AL 35293 636005396 501(C)(3) 199946 0 RESEARCH UNIVERSITY OF CALIFORNIA IRVINE 228 ALDRICH HALL IRVINE CA 92697 952226406 501(C)(3) 300000 0 RESEARCH UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92037 956006144 501(C)(3) 775000 0 RESEARCH UNIVERSITY OF CALIFORNIA SAN FRANCISCO 100 STEIN PLAZA LOS ANGELES CA 90095 956006143 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF DELAWARE 590 AVENUE 1743 NEWARK DE 19716 911955015 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF FLORIDA PO BOX 100284 GAINESVILLE FL 32610 592729133 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF ILLINOIS-CHICAGO 1855 WEST TAYLOR STREET CHICAGO IL 60612 376000511 501(C)(3) 75000 0 RESEARCH UNIVERSITY OF MICHIGAN 733 KELLOGG EYE CENTER 1000 WALL STREET ANN ARBOR MI 48105 386006309 501(C)(3) 75000 0 RESEARCH UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET PHILADELPHIA PA 19104 232810852 501(C)(3) 575000 0 RESEARCH UNIVERSITY OF PITTSBURGH 123 UNIVERSITY PLACE PITTSBURGH PA 15213 250965591 501(C)(3) 140000 0 RESEARCH UNIVERSITY OF WASHINGTON 1100 45TH ST NE SEATTLE WA 98105 943079432 501(C)(3) 1023689 0 RESEARCH UNIVERSITY OF WISCONSIN 21 NORTH PARK STREET MADISON WI 53715 390743975 501(C)(3) 98190 0 RESEARCH 26 2 PART I, LINE 2: EACH GRANTEE IS REQUIRED TO SUBMIT A YEARLY SCIENTIFIC PROGRESS REPORT, WHICH IS REVIEWED BY THE FFB SCIENCE STAFF AND COMPARED WITH THE PROPOSED MILESTONES SUBMITTED WITH THE ORIGINAL GRANT APPLICATION. ATTENTION IS ALSO GIVEN TO THE PLAN FOR EXPERIMENTS TO BE PERFORMED IN THE COMING YEAR. ANY PROBLEMS OR ISSUES IDENTIFIED BY THE GRANTEE AND/OR FFB SCIENTIFIC STAFF ARE RESOLVED TO OUR MUTUAL SATISFACTION; HOWEVER, IF A CONSENSUS CANNOT BE REACHED OR IF THE APPARENT PROGRESS IS NOT SATISFACTORY IN THE OPINION OF FFB SCIENTIFIC STAFF, AFTER CONSULTATION WITH MEMBERS OF THE FFB SCIENTIFIC ADVISORY BOARD, THE GRANT IS TERMINATED WITH A SHORT PHASE OUT PERIOD. EACH GRANTEE IS REQUIRED TO SUBMIT A YEARLY FINANCIAL REPORT DETAILING GRANT EXPENDITURES ACCORDING TO THEIR FFB APPROVED GRANT BUDGET. SCIENCE STAFF REVIEW EACH FINANCIAL REPORT FOR ADHERENCE TO BUDGETED EXPENDITURES IN EACH CATEGORY. WITH PROPER DOCUMENTATION AND IF DETERMINED APPROPRIATE, REQUESTS FOR CARRYOVER OF UNEXPENDED FUNDS TO THE NEXT FISCAL YEAR ARE REVIEWED AND APPROVED ON A CASE-BY-CASE BASIS. X 1 1 X X X X X 0 0 0 0 0 0 0 1 0 BENJAMIN R YERXA CEO (THRU 7/1/22) 188641 298945 59520 32049 363 196 2860 1540 15633 22425 267017 355155 0 0 JASON D MENZO CEO (BEG 7/1/22) 319304 79826 47514 11879 300 75 14312 3578 36991 9248 418421 104606 0 0 CLAIRE GELFMAN CHIEF SCIENTIFIC OFFICER 324295 0 37425 0 1650 0 11157 0 45334 0 419861 0 0 0 PETER GINSBERG COO 235553 58888 27682 6920 860 215 13588 3397 33624 8406 311307 77826 0 0 RUSSELL W KELLEY MANAGING DIRECTOR, RD FUND 0 260777 0 19209 0 557 0 16971 0 42319 0 339833 0 0 RICHELE DONAT CHRO 219955 0 18287 0 22913 0 12670 0 16082 0 289907 0 0 0 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 228493 0 17352 0 526 0 7495 0 25895 0 279761 0 0 0 JUDY L TAYLOR SVP, CHIEF DEVELOPMENT OFFICER 182659 0 14656 0 758 0 12350 0 41887 0 252310 0 0 0 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 164307 0 17412 0 360 0 1883 0 44573 0 228535 0 0 0 MICHELE C DIVINCENZO VP, EVENTS 168280 0 17345 0 354 0 10363 0 25099 0 221441 0 0 0 JEFFRY C COLLINS VP, DATABASE SYSTEMS & TECHNOLOGY 164093 0 12072 0 990 0 10909 0 26880 0 214944 0 0 0 AMY M PALMER LASTER SVP, SCIENCE STRATEGY & AWARDS 179734 0 17820 0 246 0 9643 0 4254 0 211697 0 0 0 CHAD R JACKSON SR DIR, PRE-CLINICAL TRANSLATIONAL P 167322 0 13264 0 147 0 10641 0 4330 0 195704 0 0 0 ANNA WAGNER VP, FINANCE 153957 0 12743 0 117 0 9507 0 2586 0 178910 0 0 0 PART I, LINE 1A SPOT BONUSES FOR EXTRAORDINARY WORK ARE PROVIDED TO EMPLOYEES. IF THE BONUS IS $1,000 OR LESS, IT IS GROSSED UP. THESE SPOT BONUSES AND GROSS UPS ARE INCLUDED IN TAXABLE COMPENSATION. PART I, LINE 7 FFB EMPLOYEES PARTICIPATE IN AN ANNUAL INCENTIVE PLAN. THE PLAN PROVIDES AN ANNUAL CASH BONUS DEPENDING UPON THE ACHIEVEMENT OF PRE-DETERMINED ORGANIZATION AND INDIVIDUAL PERFORMANCE CRITERIA. X 34 7196835 FAIR MARKET VALUE X EVENT ITEMS 819 314406 FAIR MARKET VALUE 0 0 1 1 PART I, COLUMN (B): THE NUMBER IN THIS COLUMN FOR LINE 9 REPRESENTS THE NUMBER OF CONTRIBUTIONS OF STOCK. PART I, LINE 32B: WHEN DONATED STOCK IS RECEIVED, OUR BROKER MERRILL LYNCH IMMEDIATELY CONVERTS THESE CONTRIBUTIONS INTO CASH. FORM 990, PART VI, SECTION A, LINE 4 THE FOUNDATION FIGHTING BLINDNESS, INC MADE THE FOLLOWING CHANGES TO THEIR BYLAWS: AT THE END OF ARTICLE XI, SECTION 4 (ON VICE CHAIRS) THE FOLLOWING WAS ADDED: FURTHER, IF THE BOARD OF DIRECTORS ELECTS TWO OR MORE VICE CHAIRS, THE BOARD OF DIRECTORS MAY DESIGNATE ONE OF THE VICE CHAIRS AS EXECUTIVE VICE CHAIR. IF SO ELECTED, THE EXECUTIVE VICE CHAIR WILL SERVE AS THE PRIMARY SUPPORT TO THE CHAIR FOR ADDITIONAL SERVICES ON BEHALF OF THE FOUNDATION, WILL BE THE VICE CHAIR FIRST RESPONSIBLE TO PERFORM THE DUTIES OF THE CHAIR OF THE BOARD IN THE CHAIR'S ABSENCE, AND WILL CARRY OUT SUCH OTHER DUTIES AS MAY BE PRESCRIBED BY THE CHAIR OR THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION A, LINE 6 MEMBERS OF FFB ARE KNOWN AS NATIONAL TRUSTEES. THE QUALIFICATIONS AND ELIGIBILITY FOR MEMBERSHIP AND THE MANNER OF ADMISSION INTO MEMBERSHIP IS PRESCRIBED BY RESOLUTION OF THE BOARD OF DIRECTORS. THE NATIONAL TRUSTEES ARE ENTITLED TO VOTE ON ELECTION OF DIRECTORS. FORM 990, PART VI, SECTION A, LINE 7A DURING THE ANNUAL MEETING OF THE NATIONAL TRUSTEES, MEMBERS OF THE BOARD OF DIRECTORS ARE ELECTED. FORM 990, PART VI, SECTION B, LINE 11B DATA TO PREPARE THE FEDERAL FORM 990 IS PROVIDED TO OUR OUTSIDE ACCOUNTING FIRM FOR PREPARATION AND GUIDANCE. AFTER IT HAS BEEN COMPLETED, A DRAFT OF THE FEDERAL FORM 990 IS REVIEWED BY THE VP, FINANCE AND CHIEF OPERATING OFFICER. WITH THE COO'S APPROVAL, THE DRAFT FEDERAL FORM 990 IS THEN MADE AVAILABLE TO ALL BOARD MEMBERS. ALL BOARD MEMBERS ARE INVITED TO ATTEND A SPECIAL MEETING OF THE FINANCE COMMITTEE TO REVIEW THE FEDERAL FORM 990. A FINAL DRAFT IS MADE AVAILABLE TO ALL BOARD MEMBERS BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C IN CONNECTION WITH ANY ACTUAL OR POSSIBLE CONFLICT OF INTEREST, AN INTERESTED PERSON (INCLUDING OFFICERS, DIRECTORS, AND KEY EMPLOYEES) MUST DISCLOSE, IN WRITING PRIOR TO ANY DISCUSSION OR VOTE UPON A PROPOSAL, THE EXISTENCE AND NATURE OF HIS OR HER PERSONAL INTEREST TO THE CHAIR OF THE BOARD AND CHAIR OF THE BOARD COMMITTEE CONSIDERING THE PROPOSED TRANSACTION OR ARRANGEMENT. AFTER DISCLOSURE OF THE FINANCIAL INTEREST AND ALL MATERIAL FACTS, THE INTERESTED PERSON SHALL LEAVE THE BOARD OR COMMITTEE MEETING WHILE THE FINANCIAL INTEREST IS DISCUSSED AND VOTED UPON. THE REMAINING BOARD SHALL DECIDE IF A CONFLICT OF INTEREST EXISTS, AND IF SO, WHETHER THERE IS A COMPELLING REASON TO RECOMMEND TO THE BOARD THAT THE CONFLICT OF INTEREST POLICY BE OVERRIDDEN. A QUORUM IS NEEDED FOR VOTING AND THE VOTE TO OVERRIDE SHALL BE BY MAJORITY AND DULY NOTED IN THE MINUTES. FORM 990, PART VI, SECTION B, LINE 15 THE COMPENSATION COMMITTEE AND THE BOARD OF DIRECTORS APPROVES THE COMPENSATION OF THE CHIEF EXECUTIVE OFFICER. THE COMPENSATION COMMITTEE APPROVES THE COMPENSATION OF THE OTHER CHIEF OFFICERS. ON A ROUTINE BASIS, EXTERNAL DATA PROVIDED BY OUTSIDE EXPERT COMPENSATION CONSULTANTS IS USED TO MEASURE REASONABLENESS OF SALARIES TO THE MARKET PLACE AND RESULTS ARE COMMUNICATED BY OUTSIDE CONSULTANTS TO THE BOARD CHAIR/COMPENSATION COMMITTEE. FORM 990, PART VI, SECTION C, LINE 19 FFB'S FEDERAL FORM 990 AND CONSOLIDATED AUDITED FINANCIAL STATEMENTS ARE AVAILABLE AT WWW.FIGHTBLINDNESS.ORG. OTHER PUBLIC DOCUMENTS INCLUDING THE CONFLICT OF INTEREST POLICY ARE AVAILABLE UPON REQUEST THROUGH THE CONTACT INFORMATION DISCLOSED ON FFB'S WEB SITE. THESE DOCUMENTS ARE AVAILABLE FOR THE SAME PERIOD OF DISCLOSURE AS SET FORTH IN SECTION 6104(D). FORM 990, PART VII, SECTION A: FFB ACTS AS THE COMMON PAYMASTER FOR THE FOUNDATION FIGHTING BLINDNESS RETINAL DEGENERATION FUND, A RELATED ORGANIZATION. BENJAMIN YERXA'S COMPENSATION INCLUDED IN PART VII, COLUMNS D, E, AND F INCLUDES HIS COMPENSATION PAID AS THE CEO OF FFB AND FFB RD FUND FOR THE PERIOD JANUARY 2022 THROUGH JULY 2022. IT ALSO INCLUDES HIS COMPENSATION PAID AS THE CEO OF RELATED ORGANIZATION, OPUS GENETICS, FROM JULY 2022 THROUGH DECEMBER 2022. FORM 990, PART XI, LINE 9: GRANT REFUNDS 15,063. FOUNDATION FIGHTING BLINDNESS RETINAL DEGENERATION FUND 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 450524687 FUNDS RESEARCH AND CLINICAL TRIALS TO FIND TREATMENTS FOR RETINAL DISEASES DE 501(C)(3) LINE 12A, I FOUNDATION FIGHTING BLINDNESS INC 1 MACULAR DEGENERATION INTERNATIONAL INC 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 363923922 FUNDRAISING IL 501(C)(3) LINE 7 FOUNDATION FIGHTING BLINDNESS INC 1 NATIONAL RETINITIS PIGMENTOSA FOUNDATION INC 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 522072391 FUNDRAISING MD 501(C)(3) LINE 12A, I FOUNDATION FIGHTING BLINDNESS INC 1 OPUS GENETICS INC 8 DAVIS DRIVE SUITE 220 DURHAM NC 27709 863335973 GENE THERAPY DE FOUNDATION FIGHTING BLINDNESS INC C 5327 305208 0.06350 1 0 1 1 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 FOUNDATION FIGHTING BLINDNESS RD FUND B 14920274 FAIR MARKET VALUE FOUNDATION FIGHTING BLINDNESS RD FUND O 845458 FAIR MARKET VALUE OPUS GENETICS INC C 400000 FAIR MARKET VALUE PART IV, IDENTIFICATION OF RELATED ORGANIZATION TAXABLE AS A CORPORATION: OPUS GENETICS, INC., A FOR-PROFIT COMPANY BACKED BY THE FOUNDATION AND THE RD FUND, WHEREBY THE FOUNDATION AND THE RD FUND HELD A COMBINED OWNERSHIP OF OVER 50% UNTIL DECEMBER 31, 2022. ON DECEMBER 31, 2022, ADDITIONAL INVESTMENTS FROM THIRD PARTIES REDUCED THE COMBINED OWNERSHIP BY THE FOUNDATION AND THE RD FUND TO BELOW 50%. AT JUNE 30, 2023, THE COMBINED OWNERSHIP IS 43.28% AND IS NO LONGER A CONTROLLED ORGANIZATION.