2021-11-11T17:43:36-06:00 2021-06-30 420714325 RSM US LLP 100 INTERNATIONAL DRIVE SUITE 1400 BALTIMORE MD 21202 990 2020-07-01 237135845 THE FOUNDATION FIGHTING BLINDNESS INC FOUN 4104230600 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 PETER GINSBERG EVP/CHIEF BUSINESS OFFICER 4104230600 2021-11-11 1 PETER GINSBERG 999009999 JULIA FLANNERY CPA P00928915 4102469301 2021-11-11 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z BENJAMIN YERXA 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 77305349 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. 25 25 67 2500 3268 0 31895116 27741201 239962 145815 3378679 2102154 -140870 -197691 35372887 29791479 21163616 22388798 0 0 7253730 6942064 686365 924110 5831898 12030764 10473253 41134475 40728225 -5761588 -10936746 159573247 155616058 14014074 21019889 145559173 134596169 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 28532557 22388798 176315 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 $42 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 2021, THE FOUNDATION'S RESEARCH GRANTS PROGRAM IS FUNDING 82 GRANTS BEING CONDUCTED BY MORE THAN 90 INVESTIGATORS AT 67 INSTITUTIONS, EYE HOSPITALS AND UNIVERSITIES IN THE U.S. AND AROUND THE WORLD. A SAMPLING OF THE RESEARCH PROJECTS FUNDED ARE LISTED BELOW.DEVELOPMENT OF A DRY AMD GENE THERAPYBARBEL ROHRER, PHD, MEDICAL UNIVERSITY OF SOUTH CAROLINATRANSLATIONAL RESEARCH ACCELERATION PROGRAMDR. ROHRER IS CONDUCTING AN ANIMAL STUDY OF A GENE THERAPY DESIGNED TO SELECTIVELY DELIVER A COMPONENT OF COMPLEMENT FACTOR H (CFH) TO TEMPER THE OVERACTIVE INNATE IMMUNE SYSTEM IN AGE-RELATED MACULAR DEGENERATION. THE APPROACH IS DESIGNED TO MITIGATE RETINAL DEGENERATION CAUSED BY THE IMMUNE RESPONSE, TARGETING THE DAMAGE WHERE IT IS MOST LIKELY TO OCCUR.ADVANCING A PHARMACEUTICAL THERAPY FOR RETINITIS PIGMENTOSAPAUL YANG, MD, PHD, OREGON HEALTH & SCIENCE UNIVERSITYTRANSLATIONAL RESEARCH ACCELERATION PROGRAMDR. YANG IS EVALUATING THE DRUG MYCOPHENOLATE AS A THERAPY FOR MULTIPLE FORMS OF RETINITIS PIGMENTOSA AND RELATED CONDITIONS. ALREADY APPROVED BY THE FDA FOR INFLAMMATORY CONDITIONS, MYCOPHENOLATE HAS BEEN SHOWN TO REDUCE THE ACCUMULATION OF A MOLECULE CALLED CYCLIC GUANOSINE MONOPHOSPHATE (CGMP). WHILE CGMP IS AN IMPORTANT MESSENGER MOLECULE FOR CONVERTING LIGHT INTO ELECTRICAL SIGNALS IN THE RETINA, TOO MUCH OF IT IS TOXIC AND CAUSES RETINAL DEGENERATION. DEVELOPMENT OF RNA THERAPIES FOR STARGARDT DISEASEROB COLLIN, PHD, RADBOUD UNIVERSITYTRANSLATIONAL RESEARCH ACCELERATION PROGRAM DR. COLLIN IS DEVELOPING ANTISENSE OLIGONUCLEOTIDES (AON) TINY PIECES OF DNA TO MASK SPLICING MUTATIONS IN ABCA4, THE AFFECTED GENE IN PEOPLE WITH STARGARDT DISEASE. THE AONS TARGET MUTATIONS IN RNA, THE GENETIC MESSAGES USED TO BUILD PROTEINS THAT ARE NECESSARY FOR A CELL'S HEALTH AND PROPER FUNCTIONING. 1707983 PUBLIC HEALTH EDUCATION: DURING FISCAL YEAR 2021, 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 FY21 THE FOUNDATION SUPPORTED OVER 40 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 650 PEOPLE IN ATTENDANCE FOR EACH WEBINAR. 1953288 MY RETINA TRACKER: 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 2021 APPROXIMATELY 3,600 ADDITIONAL MEMBERS WERE ADDED TO THE REGISTRY, BRINGING TOTAL REGISTERED INDIVIDUALS UP TO 18,542. 32193828 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 1 169 0 1 67 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 25 25 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 10.00 1.00 X X 0 0 0 JOEL DAVIS DIRECTOR 1.00 X 0 0 0 EDWARD RUSSNOW VICE CHAIRMAN, DEVELOPMENT 1.00 X X 0 0 0 JONATHAN STEINBERG MD VICE CHAIRMAN, RESEARCH 1.00 1.00 X X 0 0 0 WARREN THALER VICE CHAIRMAN, BOARD DEV & COMM 1.00 1.00 X X 0 0 0 HAYNES LEA SECRETARY 1.00 X X 0 0 0 YVONNE CHESTER DIRECTOR 1.00 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 DARREN DEVOUE DIRECTOR 1.00 X 0 0 0 JASON FERREIRA DIRECTOR 1.00 X 0 0 0 ADRIENNE GRAVES DIRECTOR 1.00 1.00 X 0 0 0 GORDON GUND DIRECTOR - CHAIRMAN EMERITUS 1.00 X X 0 0 0 ROBERT HEIDENBERG DIRECTOR 1.00 X 0 0 0 JANNI LEHRER-STEIN DIRECTOR 1.00 X 0 0 0 LAURA MANFRE DIRECTOR 1.00 X 0 0 0 BRADFORD MANNING DIRECTOR 1.00 X 0 0 0 EVAN MITTMAN DIRECTOR 1.00 X 0 0 0 JASON MORRIS TREASURER 1.00 1.00 X X 0 0 0 KAREN PETROU DIRECTOR 1.00 X 0 0 0 MARYROSE SYLVESTER VICE CHAIR, AT LARGE 1.00 X X 0 0 0 JEFFREY FREED DIRECTOR 1.00 X 0 0 0 DAVID NIXON 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 336624 181259 52808 PATRICIA DUDLEY CHIEF HUMAN RESOURCE OFFICER 40.00 X 210883 0 48983 JASON D MENZO COO 38.00 2.00 X 357995 18842 57117 BRIAN MANSFIELD EVP, RESEARCH & INTERIM CSO 40.00 X 280052 0 41807 JUDY L TAYLOR VP, DEVELOPMENT 40.00 X 178214 0 45665 NANCY M DAVENPORT VP, FINANCE 36.00 4.00 X 167955 18662 12346 RUSSELL W KELLEY SVP, RD FUNDS 0.00 40.00 X 0 225588 49753 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 40.00 X 219921 0 27590 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 40.00 X 169325 0 39324 MICHELE C DIVINCENZO VP, EVENTS 40.00 X 146567 0 29349 CHAD R JACKSON DIR, PRECLINICAL TRANSLATIONAL RES 40.00 X 154501 0 7364 AMY M PALMER LASTER VP, GRANTS & AWARDS PROGRAMS 40.00 X 159355 0 11449 JEFFRY C COLLINS VP, DATABASE SYSTEMS & TECH 40.00 X 138068 0 26792 STEPHEN MARK ROSE FOMER SR. SCIENTIFIC ADV (THRU 6/1/20) 40.00 X 141116 0 19684 2660576 444351 470031 20 1 1 0 FUSE FUNDRAISING GROUP LLC 12355 SUNRISE VALLEY DRIVE SUITE 2 RESTON VA 20191 DIRECT MARKETING CONSULTANT 598893 RED DELUXE LLC PO BOX 3350 MEMPHIS TN 38173 FUNDRAISING CAMPAIGN CONSULTANT 462695 IQVIA TECHNOLOGY SERVICES LTD 210 PENTONVILLE ROAD LONDON UK N1 9JY SOFTWARE INTEGRATION CONSULTANT 317500 AILERON CONSULTING LLC 2111 WILSON BLVD SUITE 700 ARLINGTON VA 22202 SOFTWARE INTEGRATION CONSULTANT 256126 DP SOLUTIONS 9160 RED BRANCH ROAD SUITE W-1 COLUMBIA MD 21045 IT CONSULTANT 165771 8 158113 5049239 1062123 21471726 14034939 27741201 CONTRACT REVENUE 900099 145815 145815 145815 4317491 4317491 46955 46955 29767 0 29767 29767 29767 44880975 47096312 -2215337 -2215337 -2215337 100200 5049239 408395 -308195 -308195 12431 9163 3268 3268 FFB RDF SERVICE FEES 900099 30500 30500 OTHER INCOME 900099 14 14 30514 29791479 176315 3268 1870695 18228626 18228626 4160172 4160172 1856941 757114 604882 494945 3872661 1287182 727436 1858043 240306 79903 57735 102668 587532 170224 134920 282388 384624 130033 87357 167234 1896810 1319019 259481 318310 18295 4000 14295 51413 46900 4513 924110 924110 344015 317011 27004 210658 112215 5146 93297 446053 100242 74670 271141 345128 25819 58784 260525 444400 50512 71264 322624 8805 748 1986 6071 72136 11885 5113 55138 303474 144247 31046 128181 249843 135037 28165 86641 TRIAL RELATED COSTS 5339431 5339431 PROF FUNDRAISING - OTHE 319496 319496 PRINTING & PRODUCTION 139267 76491 35883 26893 CONFERENCE FEE REFUNDS 25000 25000 259029 35928 140425 82676 40728225 32193828 2702499 5831898 8753237 7041825 25363837 25047700 28415543 13668152 550430 458457 500000 1000000 15170 1012101 755948 4840299 3891051 1153839 949248 86180174 97624354 7644086 9055204 159573247 155616058 1293010 1700819 10904636 11728046 17450 265681 1062123 1093127 736855 6232216 14014074 21019889 X 33631452 32481702 111927721 102114467 145559173 134596169 159573247 155616058 X -10936746 -32146 5888 X 0 1 X 1 0 X 22746532 22775761 50471319 31895116 27741201 155629929 22746532 22775761 50471319 31895116 27741201 155629929 47661176 107968753 4320989 4875189 5503900 5325536 4394213 24419827 100091 636502 867745 358160 130714 2093212 182142968 1565751 0.59280 0.57110 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: FFB RD FUND SERVICE FEES - 2016 AMOUNT: $ 99,996. 2017 AMOUNT: $ 100,000. 2018 AMOUNT: $ 100,000. 2019 AMOUNT: $ 100,000. 2020 AMOUNT: $ 30,500. MISCELLANEOUS - 2016 AMOUNT: $ 95. 2017 AMOUNT: $ 1,805. 2018 AMOUNT: $ 82. 2019 AMOUNT: $ 71. 2020 AMOUNT: $ 14. FUNDRAISING EVENTS - 2017 AMOUNT: $ 534,697. 2018 AMOUNT: $ 767,663. 2019 AMOUNT: $ 258,089. 2020 AMOUNT: $ 100,200. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 3422374 939020 145067 15805 4200522 3381828 137702 83399 13757 3422374 3256748 208731 74246 9405 3381828 3256748 11279 9028 2251 3256748 3190000 66748 17173 15012 2161 3256748 1.00000 0 0 149229 147433 1796 1113640 898418 215222 3577430 2845200 732230 949248 BENEFICIAL INTERESTS IN REMAINDER TRUSTS 7816076 CHARITABLE GIFT ANNUITY 888072 DUE FROM RELATED PARTY 351056 9055204 CHARITABLE GIFT ANNUITY OBLIGATION 617921 DEFERRED RENT 12485 DUE TO RELATED PARTY 5601810 6232216 X 40817085 -32146 59067 22486984 22513905 18303180 317011 11171288 11488299 29791479 31593270 59067 2319277 2378344 29214926 317011 11196288 11513299 40728225 PART V, LINE 4: EARNINGS CAN BE USED FOR OPERATIONS; PRINCIPAL IS DONOR RESTRICTED. PART X, LINE 2: THE FOUNDATION PERFORMED AN EVALUATION OF ITS UNCERTAINTY IN INCOME TAX FOR THE YEARS ENDED JUNE 30, 2021 AND 2020, 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 FOUNDATION 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 FOUNDATION 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 FOUNDATION'S TAX POSITIONS AND HAS CONCLUDED THAT THE FOUNDATION HAS TAKEN NO UNCERTAIN TAX POSITIONS THAT REQUIRE ADJUSTMENT TO THE FINANCIAL STATEMENTS TO COMPLY WITH PROVISIONS OF THIS GUIDANCE. THE FOUNDATION IS NO LONGER SUBJECT TO INCOME TAX EXAMINATIONS FOR THE U.S. FEDERAL, STATE OR LOCAL TAX AUTHORITIES FOR YEARS BEFORE JUNE 30, 2018. PART XI, LINE 2D - OTHER ADJUSTMENTS: REVENUE FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 22,511,984. RECLASSIFICATION OF CONFERENCE FEE REFUNDS -25,000. PART XI, LINE 4B - OTHER ADJUSTMENTS: ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS 11,171,288. PART XII, LINE 2D - OTHER ADJUSTMENTS: EXPENSES FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 2,325,165. GRANT REFUNDS -5,888. PART XII, LINE 4B - OTHER ADJUSTMENTS: ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS 11,171,288. RECLASSIFICATION OF CONFERENCE FEE REFUNDS 25,000. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTMAKING 3835172 NORTH AMERICA 0 0 GRANTMAKING 150000 EAST ASIA AND THE PACIFIC 0 0 GRANTMAKING 75000 MIDDLE EAST AND NORTH AFRICA 0 0 GRANTMAKING 100000 0 0 0 0 0 0 4160172 0 4160172 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 1537891 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 150000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 100000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 601602 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 100000 CHECK 0 MIDDLE EAST AND NORTH AFRICA RESEARCH 100000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 94000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 218446 CHECK 0 NORTH AMERICA RESEARCH 75000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 333233 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 700000 CHECK 0 NORTH AMERICA RESEARCH 75000 CHECK 0 EAST ASIA AND THE PACIFIC RESEARCH 75000 CHECK 0 13 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. 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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 270471 145638 65516 35278 637 343 11136 5996 23189 12487 370949 199742 0 0 JASON D MENZO COO 311351 16387 46009 2422 635 33 16572 872 37689 1984 412256 21698 0 0 BRIAN MANSFIELD EVP, RESEARCH & INTERIM CSO 241383 0 35371 0 3298 0 15350 0 26457 0 321859 0 0 0 RUSSELL W KELLEY SVP, RD FUNDS 0 205125 0 19740 0 723 0 13129 0 36624 0 275341 0 0 PATRICIA DUDLEY CHIEF HUMAN RESOURCE OFFICER 179487 0 27217 0 4179 0 11833 0 37150 0 259866 0 0 0 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 199955 0 19467 0 499 0 6712 0 20878 0 247511 0 0 0 JUDY L TAYLOR VP, DEVELOPMENT 161508 0 15880 0 826 0 10674 0 34991 0 223879 0 0 0 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 152704 0 16062 0 559 0 1788 0 37536 0 208649 0 0 0 NANCY M DAVENPORT VP, FINANCE 151781 16865 14165 1574 2009 223 9957 1106 1155 128 179067 19896 0 0 MICHELE C DIVINCENZO VP, EVENTS 132699 0 13385 0 483 0 8979 0 20370 0 175916 0 0 0 AMY M PALMER LASTER VP, GRANTS & AWARDS PROGRAMS 145797 0 13384 0 174 0 8838 0 2611 0 170804 0 0 0 JEFFRY C COLLINS VP, DATABASE SYSTEMS & TECH 132107 0 4000 0 1961 0 8460 0 18332 0 164860 0 0 0 CHAD R JACKSON DIR, PRECLINICAL TRANSLATIONAL RES 148596 0 5816 0 89 0 4644 0 2720 0 161865 0 0 0 STEPHEN MARK ROSE FOMER SR. SCIENTIFIC ADV (THRU 6/1/2 122742 0 0 0 18374 0 6473 0 13211 0 160800 0 0 0 PART I, LINE 4A STEPHEN ROSE 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 97 13864204 FAIR MARKET VALUE X EVENT ITEMS 277 170735 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 CHANGE TO THEIR BYLAWS: ARTICLE IX, SECTION 1. NAMES. THE NINE STANDING COMMITTEES SHALL BE THE AUDIT, COMPENSATION, DEVELOPMENT, FINANCE, GOVERNMENT RELATIONS, INVESTMENT, MARKETING, COMMUNICATIONS, & SOCIAL MEDIA, NOMINATING & GOVERNANCE, AND RESEARCH OVERSIGHT. THE BOARD OF DIRECTORS SHALL HAVE THE POWER TO ADD OR ELIMINATE STANDING COMMITTEES, EXCEPT THAT THE FINANCE, AUDIT, COMPENSATION, RESEARCH OVERSIGHT, AND NOMINATING AND GOVERNANCE COMMITTEES MAY NOT BE ELIMINATED. 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 CONTROLLER AND CHIEF BUSINESS OFFICER. WITH THE CBO'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 5,888. 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 223 SOUTH WEST STREET SUITE 900 RALEIGH NC 27603 863335973 GENE THERAPY DE N/A C 0 0 1 0 0 0 0 0 0 0 0 0 1 0 0 1 0 0 0 0 FOUNDATION FIGHTING BLINDNESS RD FUND B 11140788 FAIR MARKET VALUE FOUNDATION FIGHTING BLINDNESS RD FUND L 30500 FAIR MARKET VALUE FOUNDATION FIGHTING BLINDNESS RD FUND O 849141 FAIR MARKET VALUE