2022-11-02T12:17:07-05:00 2022-06-30 420714325 RSM US LLP 100 INTERNATIONAL DRIVE SUITE 1400 BALTIMORE MD 21202 990 2021-07-01 237135845 THE FOUNDATION FIGHTING BLINDNESS INC FOUN 4104230600 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 PETER GINSBERG CHIEF OPERATING OFFICER 4104230600 2022-11-01 1 PETER GINSBERG 999009999 JULIA FLANNERY CPA P00928915 4102469301 2022-11-01 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z JASON MENZO 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 173808183 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 68 2500 2454 0 27741201 39734129 145815 618587 2102154 2342428 -197691 192692 29791479 42887836 22388798 27487814 0 0 6942064 8006904 924110 808586 7079146 10473253 12872305 40728225 49175609 -10936746 -6287773 155616058 145877854 21019889 24415527 134596169 121462327 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 34679995 27487814 618587 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 $39 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 2022, THE FOUNDATION'S RESEARCH GRANTS PROGRAM IS FUNDING 81 GRANTS BEING CONDUCTED BY MORE THAN 105 INVESTIGATORS AT 70 INSTITUTIONS, EYE HOSPITALS AND UNIVERSITIES IN THE U.S. AND AROUND THE WORLD. A SAMPLING OF THE RESEARCH PROJECTS FUNDED ARE LISTED BELOW.HOMOLOGY-INDEPENDENT GENOME EDITING FOR TREATMENT OF STARGARDT DISEASEIVANA TRAPANI, PHD, UNIVERSIT DEGLI STUDI DI NAPOLI "FEDERICO II" NAPLES, ITALYGENE THERAPY DEVELOPMENT FOR STARGARDT DISEASE IS CHALLENGING BECAUSE ABCA4, THE MUTATED GENE CAUSING STARGARDT DISEASE, IS TOO LARGE FOR MOST VIRAL DELIVERY SYSTEMS. DR. TRAPANI IS EVALUATING A HIGHLY EFFICIENT CRISPR/CAS9 GENE-EDITING TECHNOLOGY - HOMOLOGY INDEPENDENT TARGETED INSERTION (HITI) - TO ADDRESS MUTATIONS IN ABCA4. HER EARLY PROOF-OF-CONCEPT STUDIES ARE BEING PERFORMED IN A STARGARDT DISEASE MOUSE MODEL AND A THREE-DIMENSIONAL RETINAL ORGANOID IN A DISH.ADAR-BASED RNA EDITING AS A POTENTIAL THERAPY FOR INHERITED RETINAL DEGENERATIONSDROR SHARON, PHD, HADASSAH-HEBREW UNIVERSITY MEDICAL CENTERMANY EMERGING THERAPIES TARGET MUTATIONS IN OUR GENES - OUR DNA. DR. SHARON IS INVESTIGATING A NEW TOOL FOR EDITING RNA - THE GENETIC MESSAGES DERIVED FROM DNA WHICH ARE USED BY OUR CELLS TO PRODUCE PROTEINS. KNOWN AS "INTRINSIC ADENOSINE DEAMINASE ACTING ON RNA, OR ADAR, THE TECHNOLOGY SPECIFICALLY ADDRESSES G-TO-A MUTATIONS. DR. SHARON BELIEVES THAT ABOUT 30 PERCENT OF THE MOST COMMONLY REPORTED IRD-CAUSING MUTATIONS CAN BE TARGETED FOR ADAR EDITING (MAINLY IN RELATIVELY LARGE GENES SUCH AS ABCA4 AND USH2A). HIS LAB IS EVALUATING THE TECHNOLOGY IN CELLS AND MOUSE MODELS OF RETINAL DISEASE.PRIME EDITING FOR USHER SYNDROME TYPE 2ABENCE GYORGY, MD, PHD, INSTITUTE OF MOLECULAR AND CLINICAL OPHTHALMOLOGY BASELDR. GYORGY IS DEVELOPING A GENE CORRECTION STRATEGY KNOWN AS PRIME EDITING, A NOVEL TECHNOLOGY THAT IS IN SOME WAYS SIMILAR TO GENE EDITING WITH CRISPR/CAS9, BUT POTENTIALLY MORE PRECISE AND EFFICIENT. INSTEAD OF CUTTING THE DOUBLE STRANDS OF DNA, IT NICKS THE DNA, WHICH MAY BE A PREFERRED APPROACH TO CORRECTING SINGLE-LETTER MUTATIONS. DR. GYORGY IS DEVELOPING A PRIME EDITING TREATMENT TO INSERT THE MISSING G NUCLEOTIDE INTO RETINAL CELLS WITH THE RELATIVELY COMMON USH2A MUTATION DEL2299G. IN ORDER TO FACILITATE TRANSLATION OF THIS CONCEPT TO THE CLINIC, HE WILL EVALUATE THE THERAPY IN HUMAN RETINAL EXPLANTS, HUMAN ENGINEERED RETINAL ORGANOIDS AND HUMANIZED MOUSE MODELS. IF THE APPROACH IS SUCCESSFUL, IT MAY BE APPLIED TO OTHER MUTATIONS AND IRDS. 2699288 PUBLIC HEALTH EDUCATION: DURING FISCAL YEAR 2022, 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 FY22 THE FOUNDATION SUPPORTED OVER 41 VOLUNTEER-LED CHAPTERS IN 22 STATES. THE CHAPTERS HELD 46 VIRTUAL SPEAKER PRESENTATIONS, SOCIALS, AND OTHER OUTREACH ACTIVITIES, AND CO-HOSTED SIX VIRTUAL VISION WEBINARS WITH THE FOUNDATION WITH OVER 1,000 PEOPLE IN ATTENDANCE FOR EACH WEBINAR. THIS YEAR, THE CHAPTERS ARE HOSTING OVER 80 IN-PERSON SPEAKER PRESENTATIONS AND LAUNCHING 6 NEW CHAPTERS ACROSS THE COUNTRY. 1927475 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 2022 APPROXIMATELY 3,200 ADDITIONAL MEMBERS WERE ADDED TO THE REGISTRY, BRINGING TOTAL REGISTERED INDIVIDUALS UP TO 21,816. 39306758 1 1 0 0 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 1 185 0 1 68 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 WARREN THALER VICE CHAIR, BOARD COMM & DEVELOPMENT 1.00 1.00 X X 0 0 0 BRADFORD MANNING VICE CHAIR, MARKETING, COMM & SOCIAL MEDIA 1.00 X X 0 0 0 MARYROSE SYLVESTER VICE CHAIR, AT LARGE 1.00 X X 0 0 0 JASON MORRIS TREASURER 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 STEVEN ALPER DIRECTOR 1.00 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 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 KAREN PETROU DIRECTOR 1.00 X 0 0 0 MARTHA STEELE DIRECTOR 1.00 X 0 0 0 BENJAMIN R YERXA CEO 26.00 14.00 X 431138 232152 56967 PATRICIA DUDLEY CHRO (THRU 11/15/21) 40.00 X 259940 0 39952 JASON D MENZO COO 30.00 10.00 X 346030 115343 59915 RICHELE DONAT CHRO (BEG 10/13/21) 40.00 X 46921 0 2224 PETER GINSBERG EVP, CHIEF BUSINESS OFFICER 24.00 16.00 X 184340 122894 57793 CLAIRE GELFMAN CHIEF SCIENTIFIC OFFICER(BEG 4/26/21) 40.00 X 234991 0 35069 JUDY L TAYLOR VP, DEVELOPMENT 40.00 X 202842 0 50706 NANCY M DAVENPORT VP, FINANCE (THRU 9/28/21) 40.00 X 209226 0 9736 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 40.00 X 197724 0 43707 MICHELE C DIVINCENZO VP, EVENTS 40.00 X 177579 0 33551 RUSSELL W KELLEY SVP, RD FUND 0.00 40.00 X 0 309500 54936 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 40.00 X 269889 0 31882 AMY M PALMER LASTER VP, GRANTS & AWARDS PROGRAM 40.00 X 191373 0 11582 JEFFRY C COLLINS VP, DATABASE SYSTEMS & TECHNOLOGY 40.00 X 178967 0 35440 JOHN R CORNEILLE DIR, LEGACY GIVING 40.00 X 126600 0 23669 CHAD R JACKSON DIR, PRECLINICAL TRANSLATION PROG 40.00 X 165268 0 8734 MEAGAN MACKIN AMUNDSON DIR PHILANTHROPY, MID-ATLANTIC 40.00 X 144776 0 9073 DARCY E MEADOWS DIR PHILANTHROPY, NORTHEAST 40.00 X 131497 0 9439 BEN A SHABERMAN SR DIR, SCIENCE OUTREACH & COMM ENG 40.00 X 122830 0 23470 3621931 779889 597845 19 0 1 0 FUSE FUNDRAISING GROUP LLC 12355 SUNRISE VALLEY DRIVE SUITE 2 RESTON VA 20191 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172617526 52352910 120264616 4875189 5503900 5325536 4394213 4142169 24241007 636502 867745 358160 130714 1099664 3092785 199951318 1491910 0.60150 0.59280 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: FFB RD FUND SERVICE FEES - 2017 AMOUNT: $ 100,000. 2018 AMOUNT: $ 100,000. 2019 AMOUNT: $ 100,000. 2020 AMOUNT: $ 30,500. MISCELLANEOUS - 2017 AMOUNT: $ 1,805. 2018 AMOUNT: $ 82. 2019 AMOUNT: $ 71. 2020 AMOUNT: $ 14. 2021 AMOUNT: $ 65. FUNDRAISING EVENTS - 2017 AMOUNT: $ 534,697. 2018 AMOUNT: $ 767,663. 2019 AMOUNT: $ 258,089. 2020 AMOUNT: $ 100,200. 2021 AMOUNT: $ 349,599. SETTLEMENT INCOME - 2021 AMOUNT: $ 750,000. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4200522 -565904 3634618 3422374 939020 145067 15805 4200522 3381828 137702 83399 13757 3422374 3256748 208731 74246 9405 3381828 3256748 11279 9028 2251 3256748 1.00000 0 0 974192 919110 55082 3577430 2908872 668558 723640 BENEFICIAL INTERESTS IN REMAINDER TRUSTS 6742274 CHARITABLE GIFT ANNUITY 854446 DUE FROM RELATED PARTY 351055 7947775 CHARITABLE GIFT ANNUITY OBLIGATION 607421 DEFERRED RENT 4370 DUE TO RELATED PARTY 6588060 7199851 X 35276645 -7711803 135010 275603 -7301190 42577835 310001 310001 42887836 40241260 135010 -7893624 -7758614 47999874 310001 865734 1175735 49175609 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, 2022 AND 2021, 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, 2019. PART XI, LINE 2D - OTHER ADJUSTMENTS: REVENUE FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 15,398,635. ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS -15,123,032. PART XII, LINE 2D - OTHER ADJUSTMENTS: EXPENSES FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 7,229,408. ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS -15,123,032. PART XII, LINE 4B - OTHER ADJUSTMENTS: GRANT REFUNDS 865,734. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTMAKING 5094505 NORTH AMERICA 0 0 GRANTMAKING 75000 MIDDLE EAST AND NORTH AFRICA 0 0 GRANTMAKING 100000 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 PROGRAM SERVICES TRAVEL 12261 0 0 0 0 0 0 5281766 0 5281766 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 1488816 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 871213 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 620000 WIRE 0 MIDDLE EAST AND NORTH AFRICA RESEARCH GRANT 100000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 96000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 134710 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 896466 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 492782 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 100000 WIRE 0 NORTH AMERICA RESEARCH GRANT 75000 WIRE 0 12 0 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 1198253 617434 580819 GASKILL STRATEGIES LLC 1759 CENTRAL AVE MEMPHIS TN 38104 FUNDRAISING COUNSEL 0 0 236789 -236789 RED DELUXE PO BOX 3350 MEMPHIS TN 38173 FUNDRAISING COUNSEL 0 0 261664 -261664 1198253 1115887 82366 AL AK AZ AR CA CO CT FL GA HI IL IN KS ME MD MA MI MN MS NC NH NJ NM NY OH OK OR PA SC TN UT VA WA WV WI HOPE FROM HOME (VIRTUAL) 518548 486348 32200 130792 96684 NIGHT FOR SIGHT 485483 352233 133250 136555 133427 54564 76 5701258 5517109 184149 194486 49411 17442 399057 6705289 6355690 349599 331041 49411 281661 550305 1212418 -862819 1 BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 501(C)(3) 399940 0 RESEARCH COLUMBIA UNIVERSITY 635 WEST 165TH STREET NEW YORK NY 10032 135598093 501(C)(3) 596691 0 RESEARCH DUKE UNIVERSITY MEDICAL CENTER 2200 W MAINE STREET DURHAM NC 27705 560532129 501(C)(3) 400000 0 RESEARCH EMORY UNIVERSITY 1559 CLIFTON ROAD ATLANTA GA 30322 580566256 501(C)(3) 75000 0 RESEARCH FOUNDATION FIGHTING BLINDNESS RD FUND 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 450524687 501(C)(3) 15056682 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) 198068 0 RESEARCH JOHNS HOPKINS UNIVERSITY 600 NORTH WOLFE STREET BALTIMORE MD 21287 520595110 501(C)(3) 75000 0 RESEARCH MARQUETTE UNIVERSITY PO BOX 1881 MILWAUKE WI 53201 390806251 501(C)(3) 96636 0 RESEARCH MASSACHUSETTS EYE AND EAR INFIRMARY 243 CHARLES STREET BOSTON MA 02114 042103591 501(C)(3) 840000 0 RESEARCH MEDICAL UNIVERSITY SOUTH CAROLINA 19 HAGOOD AVENUE CHARLESTON SC 29425 576028985 501(C)(3) 164004 0 RESEARCH OREGON HEALTH AND SCIENCE UNIVERSITY 3375 TERWILLIGER BOULEVARD SW PORTLAND OR 97201 237083114 501(C)(3) 768344 0 RESEARCH UNIVERSITY HOSPITALS UH GRANTS DEPT 781686 PO BOX 78000 DETROIT MI 48278 341567805 501(C)(3) 117681 0 RESEARCH UNIVERSITY OF ALABAMA AT BIRMINGHAM 1670 UNIVERSITY BLVD BIRMINGHAM AL 35293 636005396 501(C)(3) 99946 0 RESEARCH UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92037 956006144 501(C)(3) 675000 0 RESEARCH UNIVERSITY OF CALIFORNIA SAN FRANCISCO 100 STEIN PLAZA LOS ANGELES CA 90095 956006143 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF FLORIDA PO BOX 100284 GAINESVILLE FL 32610 592729133 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF LOUISVILLE 300 E MARKET STREET SUITE 300 LOUISVILLE KY 40202 237078461 501(C)(3) 227572 0 RESEARCH UNIVERSITY OF MASSACHUSETTS AMHERST 100 VENTURE WAY SUITE 201 BOX 7 HADLEY MA 01035 043167352 501(C)(3) 100000 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 NORTH CAROLINA CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL SC 27599 566001393 501(C)(3) 150000 0 RESEARCH UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET PHILADELPHIA PA 19104 232810852 501(C)(3) 993565 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) 644650 0 RESEARCH UNIVERSITY OF WISCONSIN 21 NORTH PARK STREET MADISON WI 53715 390743975 501(C)(3) 99530 0 RESEARCH 25 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. X 1 1 X X X X X 1 0 0 0 0 0 0 1 0 BENJAMIN R YERXA CEO 284904 153411 145479 78335 755 406 11244 6054 25785 13884 468167 252090 0 0 JASON D MENZO COO 251977 83992 93749 31250 304 101 12825 4275 32111 10704 390966 130322 0 0 PETER GINSBERG EVP, CHIEF BUSINESS OFFICER 168589 112393 15261 10174 490 327 9474 6316 25202 16801 219016 146011 0 0 RUSSELL W KELLEY SVP, RD FUND 0 223742 0 85195 0 563 0 15540 0 39396 0 364436 0 0 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 211226 0 58168 0 495 0 8180 0 23702 0 301771 0 0 0 PATRICIA DUDLEY CHRO (THRU 11/15/21) 197269 0 59219 0 3452 0 9492 0 30460 0 299892 0 0 0 CLAIRE GELFMAN CHIEF SCIENTIFIC OFFICER(BEG 4/26/21 215892 0 18669 0 430 0 6689 0 28380 0 270060 0 0 0 JUDY L TAYLOR VP, DEVELOPMENT 167119 0 35023 0 700 0 11718 0 38988 0 253548 0 0 0 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 155707 0 41791 0 226 0 2067 0 41640 0 241431 0 0 0 NANCY M DAVENPORT VP, FINANCE (THRU 9/28/21) 130782 0 37993 0 40451 0 7847 0 1889 0 218962 0 0 0 JEFFRY C COLLINS VP, DATABASE SYSTEMS & TECHNOLOGY 157171 0 20827 0 969 0 11033 0 24407 0 214407 0 0 0 MICHELE C DIVINCENZO VP, EVENTS 135610 0 41700 0 269 0 10360 0 23191 0 211130 0 0 0 AMY M PALMER LASTER VP, GRANTS & AWARDS PROGRAM 158349 0 32813 0 211 0 9175 0 2407 0 202955 0 0 0 CHAD R JACKSON DIR, PRECLINICAL TRANSLATION PROG 153054 0 12085 0 129 0 4926 0 3808 0 174002 0 0 0 MEAGAN MACKIN AMUNDSON DIR PHILANTHROPY, MID-ATLANTIC 136641 0 8040 0 95 0 4341 0 4732 0 153849 0 0 0 JOHN R CORNEILLE DIR, LEGACY GIVING 117759 0 8247 0 594 0 7809 0 15860 0 150269 0 0 0 PART I, LINE 4A NANCY DAVENPORT RECEIVED A SEVERANCE PAYMENT DURING THE CALENDAR YEAR. THE PAYMENT IS INCLUDED IN PART VII, COLUMN D AND SCHEDULE J, PART II, COLUMN BIII. THE TERMS AND CONDITIONS OF THE CONFIDENTIAL SEVERANCE AGREEMENT ARE AVAILABLE TO THE INTERNAL REVENUE SERVICE UPON REQUEST. 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 57 7711066 FAIR MARKET VALUE X EVENT ITEMS 955 316396 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: ARTICLE IX, SECTION 1 AND 2 - CHANGE THE NAME OF "GOVERNMENT RELATIONS" COMMITTEE TO "PUBLIC POLICY" ARTICLE XI, SECTION 5 AND 6 - ADDED '(OR EQUIVALENT)' TO 'CHIEF FINANCIAL OFFICER' 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. FORM 990, PART XI, LINE 9: GRANT REFUNDS 865,734. 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 1064397 0.13050 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 FOUNDATION FIGHTING BLINDNESS RD FUND B 15056682 FAIR MARKET VALUE FOUNDATION FIGHTING BLINDNESS RD FUND O 896794 FAIR MARKET VALUE