2020-11-09T14:51:35-06:00 2020-06-30 420714325 RSM US LLP 100 INTERNATIONAL DRIVE SUITE 1400 BALTIMORE MD 21202 990 2019-07-01 237135845 THE FOUNDATION FIGHTING BLINDNESS INC FOUN 4104230600 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 JASON MENZO COO 4104230600 2020-11-06 1 JULIA FLANNERY CPA P00928915 4102469301 2020-11-06 73.213.141.28 2020-11-06 15:13:44 ES P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 4EE6A31F760B3C5EA0809148B0E883CC4242B14C 2019 2021-01-29 14:40:06Z X BENJAMIN YERXA 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 93168667 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. 22 22 73 2500 0 0 50471319 31895116 231550 239962 3237444 3378679 -571103 -140870 53369210 35372887 15521841 21163616 0 0 6586135 7253730 353084 686365 7235289 11462968 12030764 33924028 41134475 19445182 -5761588 166093298 159573247 16767804 14014074 149325494 145559173 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 27058685 21163616 214437 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 $41.9 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 2020, 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.HOMOLOGY-INDEPENDENT GENOME EDITING FOR TREATMENT OF STARGARDT DISEASEIVANA TRAPANI, PHD, UNIVERSITA 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.CREATION OF NEW MODELS OF INHERITED RETINAL DISEASE IN PIGSMAUREEN MCCALL, PHD, UNIVERSITY OF LOUISVILLETHOUGH RODENTS ARE OFTEN USED AS MODELS FOR INHERITED RETINAL DISEASES (IRDS), THEY ARE LIMITED IN RECAPITULATING HUMAN IRDS BECAUSE THEY DON'T HAVE CONES, THE RETINAL CELLS THAT ENABLE HUMANS TO PERCEIVE DETAILS AND COLORS AND SEE IN LIGHTED SETTINGS. PIGS DO HAVE CONES AND ARE EASY TO ENGINEER TO MODEL IRDS IN HUMANS. DR. MCCALL IS CREATING A SLOW DEGENERATION PIG MODEL OF RP (RHO-P23H) AS WELL AS A PIG MODEL OF STARGARDT DISEASE. THE MODELS WILL BE USEFUL FOR EVALUATING EMERGING THERAPIES IN PREPARATION FOR CLINICAL TRIALS.GENERATION AND CHARACTERIZATION OF A PIG MODEL OF RETINITIS PIGMENTOSA (EYS MUTATION)HEMANT KHANNA, PHD, UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOLMUTATIONS IN THE EYS GENE ARE THE SECOND MOST COMMON CAUSE OF AUTOSOMAL RECESSIVE RP IN HUMANS. HOWEVER, THE INTACT EYS GENE IS ABSENT AND/OR DISRUPTED IN MANY ANIMALS, INCLUDING MICE AND RATS. THE GENE IS PRESENT IN PIGS, SO DR. KHANNA AND HIS COLLEAGUES ARE DEVELOPING A PIG MODEL OF EYS-ASSOCIATED RP, WHICH WILL BE USEFUL IN UNDERSTANDING THE EFFECTS OF EYS MUTATIONS AND TESTING EMERGING EYS THERAPIES. 1729765 125525 PUBLIC HEALTH EDUCATION:DURING FISCAL YEAR 2020, 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 A 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, IN MAY THE FOUNDATION LAUNCHED A NEW QUARTERLY CONTINUING MEDICAL EDUCATION PROGRAM FOCUSED ON PROVIDING TIMELY CONTENT TO EYECARE PROFESSIONALS.DESPITE THE PANDEMIC, THE FOUNDATION HELD A VIRTUAL NATIONAL VISIONS CONFERENCE. MORE THAN 24 DISTINGUISHED PANELISTS PRESENTED A TOTAL OF 15 SCIENTIFIC AND LIFESTYLE EDUCATION SESSIONS WITH APPROXIMATELY 1,600 PARTICIPATING IN THE SESSIONS. CHAPTERS BRING THE FOUNDATION'S MESSAGE AND MISSION TO LIFE. IN FY20 THE FOUNDATION SUPPORTED OVER 40 VOLUNTEER-LED CHAPTERS IN 22 STATES. THE CHAPTERS HELD 46 SPEAKER PRESENTATIONS, SOCIALS, AND OTHER OUTREACH ACTIVITIES WHICH NEARLY 1,400 PEOPLE ATTENDED, AND CO-HOSTED FOUR VISION SEMINARS WITH THE FOUNDATION WHICH NEARLY 500 PEOPLE ATTENDED. 2880430 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 2020 APPROXIMATELY 2,300 ADDITIONAL PATIENTS WERE ADDED TO THE REGISTRY, BRINGING TOTAL REGISTERED INDIVIDUALS UP TO 14,929. 31668880 1 1 0 0 0 0 0 0 0 1 1 0 0 0 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 73 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 22 22 0 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 NANCY DAVENPORT 4104230600 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 X DAVID BRINT CHAIRMAN 10.00 1.00 X X 0 0 0 JOEL DAVIS VICE CHAIRMAN, MAJOR GIFTS 1.00 X 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 TREASURER 1.00 X X 0 0 0 YVONNE CHESTER SECRETARY 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 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 DIRECTOR 1.00 1.00 X 0 0 0 KAREN PETROU DIRECTOR 1.00 X 0 0 0 MARYROSE SYLVESTER DIRECTOR 1.00 X 0 0 0 BENJAMIN R YERXA CEO 34.00 6.00 X 421400 74365 49683 PATRICIA DUDLEY CHIEF HUMAN RESOURCE OFFICER 40.00 X 233990 0 46245 JASON D MENZO COO 39.00 1.00 X 364166 0 52595 STEPHEN MARK ROSE SR. SCIENTIFIC ADVISOR (THRU 6/1/20) 40.00 X 247380 0 37085 BRIAN MANSFIELD EXEC VP, RESEARCH & INTERIM CSO 40.00 X 256001 0 38650 NANCY M DAVENPORT VP, FINANCE 40.00 X 178713 0 11913 RUSSELL W KELLEY VP, INVESTMENTS & ALLIANCES 0.00 40.00 X 0 210344 47392 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 40.00 X 205543 0 23665 HOPE KESSLER SR. DIRECTOR, MAJOR GIFTS (THRU 3/24/20) 40.00 X 254467 0 26965 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 40.00 X 142167 0 31459 MICHELE C DIVINCENZO VP, EVENTS 40.00 X 136911 0 27212 MICHELE O MERCER SR. DIRECTOR, DATABASE OPERATIONS 40.00 X 130696 0 33047 JOHN R CORNEILLE DIRECTOR, GIFT PLANNING 40.00 X 123280 0 19673 WILLIAM THOMAS SCHMIDT FORMER CEO 0.00 X 131800 0 0 ANNETTE M HINKLE FORMER CFO 0.00 X 182449 0 0 3008963 284709 445584 17 1 1 0 AILERON CONSULTING LLC 2111 WILSON BLVD SUITE 700 ARLINGTON VA 22202 SOFTWARE INTEGRATION CONSULTANT 382845 MINDSET DIRECT LLC 12355 SUNRISE VALLEY DRIVE SUITE 2 RESTON VA 20191 DIRECT MARKETING CONSULTANT 352179 CONTEMPORARY PRODUCTIONS LLC 190 CARONDELET PLAZA SUITE 1111 ST LOUIS MO 63105 ENTERTAINMENT FOR FUNDRAISING EVENT 238000 NNE MARKETING 1666 MASSACHUSETTS AVENUE SUITE 14 LEXINGTON MA 02420 DIRECT MARKETING CONSULTANT 192000 BLACKBAUD PO BOX 930256 ATLANTA GA 311930256 ON LINE FUNDRAISING SOFTWARE FEES 190838 9 156603 5537053 26201460 561525 31895116 CONFERENCE FEES & SPON 900099 125525 125525 CONTRACT REVENUE 900099 114437 114437 239962 5263368 5263368 29695 29695 32473 0 32473 32473 32473 55349894 57234583 -1884689 -1884689 -1884689 258089 5537053 561197 -303108 -303108 FFB RDF SERVICE FEES 900099 100000 100000 OTHER INCOME 900099 70 70 100070 35372887 339962 0 3137809 18162797 18162797 3000819 3000819 1907193 884123 486060 537010 4042769 1058044 335870 2648855 268289 86591 38112 143586 627406 160247 99154 368005 408073 126301 55276 226496 1925738 947140 212034 766564 8663 7650 1013 49413 47050 2363 686365 686365 325629 301124 24505 123369 98661 1448 23260 396348 76168 93248 226932 353845 13395 61757 278693 712467 146117 128094 438256 246734 81435 34924 130375 437994 152056 108177 177761 353402 143758 30993 178651 248229 132160 24039 92030 TRIAL RELATED COSTS 6278769 6278769 PRINTING 287090 85593 18079 183418 283074 34706 147217 101151 41134475 31668880 2230306 7235289 1763158 8753237 42857611 25363837 26254801 28415543 743629 550430 500000 500000 916253 1012101 5727405 4573566 1329279 1153839 83927791 86180174 7800776 7644086 166093298 159573247 1542226 1293010 13980632 10904636 316357 17450 1062123 928589 736855 16767804 14014074 X 36405532 33631452 112919962 111927721 149325494 145559173 166093298 159573247 X -5761588 1904479 90788 X 0 1 X 1 0 X 68515510 22746532 22775761 50471319 31895116 196404238 68515510 22746532 22775761 50471319 31895116 196404238 68889561 127514677 4764598 4320989 4875189 5503900 5325536 24790212 102691 100091 636502 867745 358160 2065189 223259639 2733930 0.57110 0.60730 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: FFB RD FUND SERVICE FEES - 2015 AMOUNT: $ 99,996. 2016 AMOUNT: $ 99,996. 2017 AMOUNT: $ 100,000. 2018 AMOUNT: $ 100,000. 2019 AMOUNT: $ 100,000. MISCELLANEOUS - 2015 AMOUNT: $ 2,695. 2016 AMOUNT: $ 95. 2017 AMOUNT: $ 1,805. 2018 AMOUNT: $ 82. 2019 AMOUNT: $ 71. FUNDRAISING EVENTS - 2017 AMOUNT: $ 534,697. 2018 AMOUNT: $ 767,663. 2019 AMOUNT: $ 258,089. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 3381828 137702 83399 13757 3422374 3256748 208731 74246 9405 3381828 3256748 11279 9028 2251 3256748 3190000 66748 17173 15012 2161 3256748 500000 2690000 23270 21049 2221 3190000 1.00000 0 0 845341 796944 48397 1304634 995094 309540 3577430 2781528 795902 1153839 CHARITABLE GIFT ANNUITY OBLIGATION 687817 DEFERRED RENT 49038 736855 X 34738956 1904479 10320 9791483 11706282 23032674 301124 12039089 12340213 35372887 31832746 10320 3028164 3038484 28794262 301124 12039089 12340213 41134475 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, 2020 AND 2019, 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, 2017. PART XI, LINE 2D - OTHER ADJUSTMENTS: REVENUE FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 9,791,483. PART XI, LINE 4B - OTHER ADJUSTMENTS: ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS 12,039,089. PART XII, LINE 2D - OTHER ADJUSTMENTS: EXPENSES FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 3,118,952. GRANT REFUNDS -90,788. PART XII, LINE 4B - OTHER ADJUSTMENTS: ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS 12,039,089. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTMAKING 2575819 NORTH AMERICA 0 0 GRANTMAKING 150000 EAST ASIA AND THE PACIFIC 0 0 GRANTMAKING 75000 MIDDLE EAST AND NORTH AFRICA 0 0 GRANTMAKING 200000 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 PROGRAM SERVICE PROGRAM RELATED TRAVEL 14211 0 0 0 0 0 0 3015030 0 3015030 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 1294831 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 315000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 200000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 99000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 100000 CHECK 0 NORTH AMERICA RESEARCH 75000 CHECK 0 NORTH AMERICA RESEARCH 75000 CHECK 0 MIDDLE EAST AND NORTH AFRICA RESEARCH 100000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 100000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 232055 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 100000 CHECK 0 MIDDLE EAST AND NORTH AFRICA RESEARCH 100000 CHECK 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 134933 CHECK 0 EAST ASIA AND THE PACIFIC RESEARCH 75000 CHECK 0 14 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 MINDSET DIRECT LLC 12355 SUNRISE VALLEY DRIVE RESTON VA 20191 FUNDRAISING COUNSEL 0 1222995 637105 585890 NNE MARKETING 754 MASSACHUSETTS AVENUE ARLINGTON MA 02476 FUNDRAISING COUNSEL 0 114592 37500 77092 INTERACTIVE STRATEGIES LLC 1133 CONNECTICUT AVENUE SUITE 600 WASHINGTON DC 20036 FUNDRAISING COUNSEL 0 53279 11760 41519 1390866 686365 704501 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 ST. LOUIS DINNER 483435 431775 51660 7606 62388 1800 4000 NY VISION FOR FUTURE 263393 208393 55000 75840 37 5048314 4896885 151429 83360 118330 200 207673 5795142 5537053 258089 166806 180718 2000 211673 561197 -303108 1 COLUMBIA UNIVERSITY 635 WEST 165TH STREET NEW YORK NY 10032 135598093 501(C)(3) 496691 0 RESEARCH DUKE UNIVERSITY MEDICAL CENTER 2200 W MAINE STREET DURHAM NC 27705 560532129 501(C)(3) 100000 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) 11939089 0 RESEARCH JOHNS HOPKINS UNIVERSITY 600 NORTH WOLFE STREET BALTIMORE MD 21287 520595110 501(C)(3) 275000 0 RESEARCH MARQUETTE UNIVERSITY PO BOX 1881 MILWAUKE WI 53201 390806251 501(C)(3) 95226 0 RESEARCH MASSACHUSETTS EYE AND EAR INFIRMARY 243 CHARLES STREET BOSTON MA 02114 042103591 501(C)(3) 775000 0 RESEARCH MOLECULAR INSIGHT RESEARCH FOUNDATION 8635 WEST 3RD LOS ANGELES CA 90048 205329822 501(C)(3) 100000 0 RESEARCH OREGON HEALTH AND SCIENCE UNIVERSITY 3375 TERWILLIGER BOULEVARD SW PORTLAND OR 97201 237083114 501(C)(3) 398593 0 RESEARCH REGENTS UNIV OF CALIFORNIA 10889 WILSHIRE BLVD LOS ANGELES CA 90095 943067788 501(C)(3) 180615 0 RESEARCH RETINA FOUNDATION OF THE SOUTHWEST 9900 NORTH CENTRAL EXPRESSWAY DALLAS TX 75231 510151514 501(C)(3) 100000 0 RESEARCH UNIV OF NC CHAPEL HILL 104 AIRPORT DRIVE CHAPEL HILL NC 27599 566001393 501(C)(3) 105000 0 RESEARCH UNIVERSITY CALIFORNIA SAN FRANCISCO 100 STEIN PLAZA LOS ANGELES CA 90095 956006143 501(C)(3) 498409 0 RESEARCH UNIVERSITY HOSPITALS UH GRANTS DEPT 781686 PO BOX 78000 DETROIT MI 48278 341567805 501(C)(3) 768554 0 RESEARCH UNIVERSITY OF CALIFORNIA BERKELEY 2150 SHATTUCK AVENUE BERKELEY CA 94720 946002123 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92037 956006144 501(C)(3) 575000 0 RESEARCH UNIVERSITY OF FLORIDA PO BOX 100284 GAINESVILLE FL 32610 592729133 501(C)(3) 300000 0 RESEARCH UNIVERSITY OF IOWA 2 GILMORE HALL IOWA CITY IA 52242 237436761 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF LOUISVILLE 300 E MARKET STREET LOUISVILLE KY 40202 237078461 501(C)(3) 170752 0 RESEARCH UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET PHILADELPHIA PA 19104 232810852 501(C)(3) 354541 0 RESEARCH UNIVERSITY OF PITTSBURGH 123 UNIVERSITY PLACE PITTSBURGH PA 15213 250965591 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF UTAH 75 SOUTH 2000 EAST SALT LAKE CITY UT 84112 876000525 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF WASHINGTON 1100 45TH ST NE SEATTLE WA 98105 943079432 501(C)(3) 196127 0 RESEARCH UNIVERSITY OF WISCONSIN 21 NORTH PARK STREET MADISON WI 53715 390743975 501(C)(3) 259200 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 FB 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 347340 61295 72474 12790 1586 280 14213 2508 28018 4944 463631 81817 0 0 PATRICIA DUDLEY CHIEF HUMAN RESOURCE OFFICER 151681 0 22306 0 60003 0 11291 0 34954 0 280235 0 50470 0 JASON D MENZO COO 321916 0 41025 0 1225 0 15730 0 36865 0 416761 0 0 0 STEPHEN MARK ROSE SR. SCIENTIFIC ADVISOR (THRU 6/1/20) 214788 0 29904 0 2688 0 13318 0 23767 0 284465 0 0 0 BRIAN MANSFIELD EXEC VP, RESEARCH & INTERIM CSO 228184 0 25499 0 2318 0 14118 0 24532 0 294651 0 0 0 NANCY M DAVENPORT VP, FINANCE 165532 0 12587 0 594 0 10687 0 1226 0 190626 0 0 0 RUSSELL W KELLEY VP, INVESTMENTS & ALLIANCES 0 192595 0 16315 0 1434 0 12197 0 35195 0 257736 0 0 TODD A DURHAM VP, CLINICAL & OUTCOMES RESEARCH 197261 0 8100 0 182 0 6268 0 17397 0 229208 0 0 0 HOPE KESSLER SR. DIRECTOR, MAJOR GIFTS (THRU 3/24 235181 0 13729 0 5557 0 4894 0 22071 0 281432 0 0 0 CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 136584 0 5400 0 183 0 3297 0 28162 0 173626 0 0 0 MICHELE C DIVINCENZO VP, EVENTS 127118 0 9193 0 600 0 8435 0 18777 0 164123 0 0 0 MICHELE O MERCER SR. DIRECTOR, DATABASE OPERATIONS 120525 0 8126 0 2045 0 8215 0 24832 0 163743 0 0 0 WILLIAM THOMAS SCHMIDT FORMER CEO 0 0 0 0 131800 0 0 0 0 0 131800 0 85486 0 ANNETTE M HINKLE FORMER CFO 0 0 0 0 182449 0 0 0 0 0 182449 0 105542 0 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-DETERIMED ORGANIZATION AND INDIVIDUAL PERFORMANCE CRITERIA. X 44 358959 FAIR MARKET X EVENT ITEMS 489 202566 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 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 OF FINANCE AND CHIEF OPERATING OFFICER. WITH THE VP OF FINANCE'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 90,788. 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 1 0 0 1 0 0 0 0 FOUNDATION FIGHTING BLINDNESS RD FUND B 11939089 FAIR MARKET VALUE FOUNDATION FIGHTING BLINDNESS RD FUND L 100000 FAIR MARKET VALUE FOUNDATION FIGHTING BLINDNESS RD FUND O 426062 FAIR MARKET VALUE