2024-11-07T07:12:56-06:00 2024-06-30 420714325 RSM US LLP 100 INTERNATIONAL DRIVE SUITE 1400 BALTIMORE MD 21202 990 2023-07-01 237135845 THE FOUNDATION FIGHTING BLINDNESS INC FOUN 4104230600 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 PETER GINSBERG CHIEF OPERATING OFFICER 4104230600 2024-11-05 1 1 JULIA FLANNERY P00928915 4102469301 2024-11-05 2023 2024-10-15 13:58:12Z JASON MENZO 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 101659035 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 78 2500 0 0 28901504 31823323 457678 1028762 1346765 1323599 -268055 1526874 30437892 35702558 27872429 21112113 0 0 8954322 10515059 605928 542609 7837916 13832761 16056630 51265440 48226411 -20827548 -12523853 130891355 124009134 30670536 31398627 100220819 92610507 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 28854715 21112113 1028762 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 OVER $43 MILLION, NOT INCLUDED ON OUR JUNE 30 FINANCIAL REPORT, FOR ACTIVE RESEARCH PROJECTS THAT HAVE FUTURE RESEARCH MILESTONES. OUR SCIENCE COMMITTEE'S SPENDING PLAN INCLUDES SPENDING AT AN AVERAGE OF $28 MILLION ANNUALLY TO SUPPORT FUTURE RESEARCH.AS OF THE END OF OUR FISCAL YEAR 2024, THE FOUNDATION'S RESEARCH GRANTS PROGRAM IS FUNDING 108 GRANTS BEING CONDUCTED BY MORE THAN 135 INVESTIGATORS AT 88 INSTITUTIONS, EYE HOSPITALS AND UNIVERSITIES IN THE U.S. AND AROUND THE WORLD. A SAMPLING OF THE RESEARCH PROJECTS FUNDED ARE LISTED BELOW."IN VIVO RETINAL RNA EDITING USING THE CELLULAR ADENOSINE DEAMINASE ACTING ON RNA (ADAR) ENZYME." - HADASSAH-HEBREW UNIVERSITY MEDICAL CENTERDOCTOR SHARON AND HIS TEAM WILL ADVANCE RNA EDITING TECHNOLOGY TO CORRECT SPECIFIC RETINAL DISEASE-CAUSING MUTATIONS. BY DEVELOPING AND ADMINISTERING NOVEL BIOLOGICAL MACHINERY TO THE RETINA THAT USES ENZYMES CALLED "ADENOSINE DEAMINASE ACTING ON RNA OR ADAR THAT SERVES AS MOLECULAR EDITORS TO CORRECT A SPECIFIC MUTATION IN RNA. THE TECHNIQUE IS LIKE GENE EDITING BUT INSTEAD OF EDITING THE GENE, THIS TECHNIQUE EDITS RNA, WHICH IS THE TRANSCRIPT OR MESSAGE READ FROM THE GENE TO PRODUCE PROTEIN."TESTING THE EFFICACY OF RT011, A DEUTERATED FORM OF DHA, AS A MUTATION INDEPENDENT THERAPY IN RETINITIS PIGMENTOSA." - KARSTEN SCHMIDT, BIOJIVABIOJIVA IS TESTING IF RT011, A NOVEL MUTATION-INDEPENDENT ORAL DRUG CANDIDATE, CAN PRESERVE RETINAL CONES AND CONE FUNCTION DESPITE ROD DEATH IN RETINITIS PIGMENTOSA. TO ACCOMPLISH THIS GOAL, THIS PROJECT WILL EVALUATE RT011 (D-DHA [DOCOSAHEXAENOIC ACID]), A DEUTERATED DHA ANALOGUE IN TWO COMPLEMENTARY ANIMAL MODELS OF CHRONIC RP (A JUVENILE PIG MODEL WITH EARLY RP ONSET AND AN ADULT MOUSE MODEL WITH LATE RP ONSET)."AAV- ANC80 GENE THERAPY PLATFORM TO TREAT VISION LOSS CAUSED BY RPGRIP1 MUTATIONS." - ASHLEY WINSLOW, ODYLIA THERAPEUTICS.DOCTOR WINSLOW IS LEADING THE TEAM AT ODYLIA THERAPEUTICS TO ADVANCE A GENE THERAPY FOR LEBER CONGENITAL AMAUROSIS (LCA6) RESULTING FROM RPGRIP1 MUTATIONS. THE THERAPY (OT-004) EMPLOYS THE ANC80 AAV CAPSID TO DELIVER A FUNCTIONAL RPGRIP1 GENE TO PHOTORECEPTORS. ODYLIA WILL CARRY OUT VECTOR PRODUCTION FOR TOXICOLOGY STUDIES, ASSESS VECTOR BIODISTRIBUTION AND TRANSGENE EXPRESSION, AND EVALUATE VECTOR SAFETY IN A 90-DAY TOXICOLOGY STUDY. 4249284 PUBLIC HEALTH EDUCATION:DURING FISCAL YEAR 2024, 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 FOUNDATION'S RESOURCES AND RESEARCH ON THE INHERITED RETINAL DISEASE SPACE. TO KEEP OUR CONSTITUENTS AND PROFESSIONALS INFORMED, THE FOUNDATION PUBLISHES EXTENSIVE CONTENT VIA THE WEBSITE AND SOCIAL MEDIA/EMAIL CHANNELS; DISTRIBUTES A NEWSLETTER ONLINE AND IN PRINT; PRODUCES AND SHARES EDUCATIONAL PODCASTS WITH LEADING EXPERTS IN THE SPACE; AND HOLDS QUARTERLY INSIGHTS FORUM CALLS TO INFORM THE COMMUNITY ABOUT SCIENTIFIC PROGRESS. THE CONTENT PRODUCED INCLUDES THE LATEST DEVELOPMENTS IN RESEARCH AND CLINICAL TRIALS, AS WELL AS 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 EYE CARE PROFESSIONALS. CHAPTERS BRING THE FOUNDATION'S MESSAGE AND MISSION TO LIFE. IN FY24, THE FOUNDATION SUPPORTED OVER 47 VOLUNTEER-LED CHAPTERS IN 23 STATES AND EXPANDED OUT OF THE US BY ADDING TWO NEW CHAPTERS IN LONDON, UK, AND PARIS, FRANCE. OUR CHAPTERS LAUNCHED A NEW PROGRAM, VISION CONNECTION, AN ENRICHING AND SUPPORTIVE GATHERING FOR THE BLIND AND LOW-VISION COMMUNITY. EACH SESSION COVERS EDUCATIONAL PRESENTATIONS, COMMUNITY ENGAGEMENT, FUNDRAISING, AND INTERACTIVE Q&A SESSIONS. 4302726 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 ABOUT PEOPLE WITH AN INHERITED RETINAL DISEASE WITHIN THE IRD RESEARCH AND CLINICAL COMMUNITIES TO HELP ACCELERATE THE DISCOVERY OF TREATMENTS AND CURES. DURING FISCAL YEAR 2024, APPROXIMATELY 10,000 ADDITIONAL MEMBERS WERE ADDED TO THE REGISTRY, BRINGING THE TOTAL NUMBER OF REGISTERED INDIVIDUALS TO OVER 35,000. 37406725 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 1 244 0 1 78 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 25 25 1 0 0 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 JONATHAN STEINBERG MD VICE CHAIR, RESEARCH 1.00 1.00 X X 0 0 0 KAREN PETROU EXECUTIVE VICE CHAIR 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 & DEV/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 DARREN DEVOUE DIRECTOR 1.00 X 0 0 0 JASON FERREIRA 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 JANINE MARKS NIXON DIRECTOR 1.00 X 0 0 0 MARTHA STEELE DIRECTOR 1.00 X 0 0 0 JOSHUA STEINBERG DIRECTOR 1.00 X 0 0 0 JASON D MENZO CEO 32.00 8.00 X 416489 104122 68385 PETER GINSBERG COO 32.00 8.00 X 290019 72505 63272 CLAIRE GELFMAN CHIEF SCIENTIFIC OFFICER 40.00 X 392360 0 60801 RICHELE DONAT CHRO 40.00 X 265633 0 33815 JUDY L TAYLOR SVP, CHIEF DEVELOPMENT OFFICER 40.00 X 227974 0 59043 RUSSELL W KELLEY MANAGING DIRECTOR, RD FUND 0.00 40.00 X 0 347534 64959 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 40.00 X 262294 0 60969 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 40.00 X 192708 0 50323 MICHELE C DIVINCENZO VP, SCIENTIFIC & EDUCATIONAL CONFERENCES 40.00 X 199289 0 48895 AMY M PALMER LASTER SVP, SCIENCE STRATEGY & AWARDS 40.00 X 220621 0 16903 JEFFRY C COLLINS VP, DATABASE SYSTEMS & TECHNOLOGY 40.00 X 192978 0 40702 CHAD R JACKSON SR DIR, PRE-CLINICAL TRANSLATIONAL PROG 40.00 X 197593 0 16231 2857958 524161 584298 25 0 1 0 FUSE FUNDRAISING GROUP LLC 12355 SUNRISE VALLEY DRIVE SUITE 2 RESTON VA 20191 DIRECT MARKETING CONSULTANT 828679 CHICAGO DOWNTOWN MARRIOTT 540 N MICHIGAN AVE CHICAGO IL 60611 VENUE FOR VISIONS 2024 CONFERENCE 262500 SYSTEM SOURCE 338 CLUBHOUSE ROAD HUNT VALLEY MD 21031 IT CONSULTANT 232411 IQVIA TECHNOLOGY SERVICES LTD 210 PENTONVILLE ROAD LONDON UK MY RETINA TRACKER CONSULTANT 176752 TPC SAWGRASS 110 CHAMPIONSHIP WAY PONTE VERDRA BEACH FL 32082 VENUE FOR GOLF EVENT 153320 18 131394 6084961 25606968 1603398 31823323 CONTRACT REVENUE 900099 800775 800775 PROGRAM FEES 900099 227987 227987 1028762 3331144 3331144 1673311 1673311 27026 0 27026 27026 27026 62884148 64891693 -2007545 -2007545 -2007545 891321 6084961 1064784 -173463 -173463 35702558 1028762 0 2850473 17518008 17518008 3594105 3594105 1815946 851708 465224 499014 6759069 2438090 878708 3442271 370386 138198 61647 170541 978136 374911 107501 495724 591522 220734 85567 285221 1899001 1388825 260984 249192 31743 176 31567 61753 57345 4408 240000 240000 542609 542609 211519 186251 25268 627974 404963 6854 216157 421595 99195 95163 227237 451089 29236 102062 319791 125741 17761 60965 47015 572038 205437 93788 272813 1961285 1212896 290574 457815 86638 74037 254 12347 204648 115856 23500 65292 TRIAL RELATED COSTS 8261887 8261887 PROF FUNDRAISING-OTHER 330133 330133 PRINTING & PRODUCTION 289778 220702 14887 54189 279808 158929 120879 48226411 37406725 2981770 7837916 4523190 5907841 3113386 5399724 19463729 16206701 541936 553927 16821 16732 774207 683433 4692695 4001473 671000 691222 93775426 85735053 8011660 8814501 130891355 124009134 1993845 2799115 20414511 21184147 442676 550960 7819504 6864405 30670536 31398627 X 19019760 20614062 81201059 71996445 100220819 92610507 130891355 124009134 X -12523853 4905675 4 7862 X 0 1 X 1 0 X 31895116 27741201 39734129 28901504 31823323 160095273 31895116 27741201 39734129 28901504 31823323 160095273 42585098 117510175 5325536 4394213 4142169 3519873 5031481 22413272 358160 130714 1099664 919337 891321 3399196 185907741 2490804 0.63210 0.58150 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: FFB RD FUND SERVICE FEES - 2019 AMOUNT: $ 100,000. 2020 AMOUNT: $ 30,500. MISCELLANEOUS - 2019 AMOUNT: $ 71. 2020 AMOUNT: $ 14. 2021 AMOUNT: $ 65. 2022 AMOUNT: $ 76. FUNDRAISING EVENTS - 2019 AMOUNT: $ 258,089. 2020 AMOUNT: $ 100,200. 2021 AMOUNT: $ 349,599. 2022 AMOUNT: $ 919,261. 2023 AMOUNT: $ 891,321. SETTLEMENT INCOME - 2021 AMOUNT: $ 750,000. 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PART X, LINE 2: THE ORGANIZATION PERFORMED AN EVALUATION OF ITS UNCERTAINTY IN INCOME TAX FOR THE YEARS ENDED JUNE 30, 2024 AND 2023, 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, 2021. PART XI, LINE 2D - OTHER ADJUSTMENTS: REVENUE FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 6,447,594. ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS -8,307,442. PART XII, LINE 2D - OTHER ADJUSTMENTS: EXPENSES FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 1,309,685. ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS -8,307,442. PART XII, LINE 4B - OTHER ADJUSTMENTS: GRANT REFUNDS 7,862. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTMAKING 3391431 NORTH AMERICA 0 0 GRANTMAKING 202674 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 PROGRAM SERVICES TRAVEL 57200 0 0 0 0 0 0 3651305 0 3651305 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 290505 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 294518 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 469000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 872356 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 100000 WIRE 0 NORTH AMERICA RESEARCH GRANT 127674 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 617500 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 99204 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 548348 WIRE 0 NORTH AMERICA RESEARCH GRANT 75000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 100000 WIRE 0 10 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. 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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 0 0 0 0 0 0 0 1 0 JASON D MENZO CEO 336556 84139 79645 19911 288 72 14656 3664 40052 10013 471197 117799 0 0 CLAIRE GELFMAN CHIEF SCIENTIFIC OFFICER 342166 0 48610 0 1584 0 12043 0 48758 0 453161 0 0 0 PETER GINSBERG COO 253239 63310 35954 8989 826 206 14901 3725 35717 8929 340637 85159 0 0 RUSSELL W KELLEY MANAGING DIRECTOR, RD FUND 0 296734 0 50248 0 552 0 18571 0 46388 0 412493 0 0 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 238960 0 22795 0 539 0 14099 0 46870 0 323263 0 0 0 RICHELE DONAT CHRO 232420 0 32266 0 947 0 15992 0 17823 0 299448 0 0 0 JUDY L TAYLOR SVP, CHIEF DEVELOPMENT OFFICER 197745 0 28994 0 1235 0 13538 0 45505 0 287017 0 0 0 MICHELE C DIVINCENZO VP, SCIENTIFIC & EDUCATIONAL CONFERE 177695 0 20900 0 694 0 12098 0 36797 0 248184 0 0 0 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 174359 0 17975 0 374 0 2027 0 48296 0 243031 0 0 0 AMY M PALMER LASTER SVP, SCIENCE STRATEGY & AWARDS 201581 0 18618 0 422 0 11697 0 5206 0 237524 0 0 0 JEFFRY C COLLINS VP, DATABASE SYSTEMS & TECHNOLOGY 172455 0 19507 0 1016 0 11687 0 29015 0 233680 0 0 0 CHAD R JACKSON SR DIR, PRE-CLINICAL TRANSLATIONAL P 176521 0 20920 0 152 0 11560 0 4671 0 213824 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 52 1337694 FAIR MARKET VALUE X EVENT ITEMS 702 265704 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 2 JONATHAN STEINBERG AND JOSHUA STEINBERG HAVE A FAMILY RELATIONSHIP. 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 OR NON-FINANCIAL INTEREST AND ALL MATERIAL FACTS, THE INTERESTED PERSON SHALL LEAVE THE BOARD OR COMMITTEE MEETING WHILE THE FINANCIAL OR NON-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 7,862. 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 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 8307442 FAIR MARKET VALUE FOUNDATION FIGHTING BLINDNESS RD FUND O 1106466 FAIR MARKET VALUE