2019-11-14T15:26:56-06:00 2019-06-30 420714325 RSM US LLP 100 INTERNATIONAL DRIVE SUITE 1400 BALTIMORE MD 21202 990 2018-07-01 237135845 THE FOUNDATION FIGHTING BLINDNESS INC FOUN 4104230600 7168 COLUMBIA GATEWAY DRIVE NO 100 COLUMBIA MD 21046 JASON MENZO COO 4104230600 2019-11-14 1 JULIA FLANNERY CPA P00928915 4102469301 66.98.98.135 2019-11-14 13:47:59 ES P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 4EE6A31F760B3C5EA0809148B0E883CC4242B14C 2018 2020-03-31 21:24:44Z BENJAMIN YERXA 7168 COLUMBIA GATEWAY DRIVE NO 100 COLUMBIA MD 21046 63034969 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. 18 18 78 2500 0 9910 22775761 50471319 255996 231550 2441422 3237444 -508508 -571103 24964671 53369210 20785716 15521841 0 0 6824930 6586135 322478 353084 7079653 6064329 11462968 33997453 33924028 -9032782 19445182 137901875 166093298 10783026 16767804 127118849 149325494 X THE MISSION OF THE FOUNDATION FIGHTING BLINDNESS, INC. (FFB) 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 19328673 12487476 160000 RESEARCH: THE FOUNDATION FIGHTING BLINDNESS, INC. (FFB) 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. FFB HAS ENCUMBRANCES OF $35.4 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 2019, FFB'S RESEARCH GRANTS PROGRAM IS FUNDING 66 GRANTS BEING CONDUCTED BY MORE THAN 110 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.RADHA AYYAGARI, PH.D, FFB-FUNDED RESEARCHER AT THE UNIVERSITY OF CALIFORNIA, SAN DIEGO, AND HER TEAM ARE LOOKING FOR ULTRA-RARE INHERITED RETINAL DEGENERATION GENES YET TO BE DISCOVERED, AS WELL AS PREVIOUSLY UNDISCOVERED DEFECTS IN KNOWN GENES. TODAY, ABOUT 65-70 PERCENT OF INHERITED RETINAL DEGENERATION PATIENTS WILL HAVE THEIR MUTATED GENE IDENTIFIED WHEN GETTING TESTED. HOWEVER, IT ALSO MEANS THAT THE GENE MUTATIONS FOR ABOUT ONE-THIRD OF PATIENTS ARE STILL NOT IDENTIFIED. DR. AYYAGARI'S RESEARCH IS CLOSING THIS GAP WITH THE IDENTIFICATION OF 'ELUSIVE OR HARD-TO-FIND GENES.RACHEL HUCKFELDT, M.D., PH.D., FFB-FUNDED EARLY-CAREER CLINICIAN SCIENTIST AT MASSACHUSETTS EYE AND EAR, IS INVESTIGATING CYSTOID MACULAR EDEMA (CME), A COMMON, VISION-ROBBING COMPLICATION OF RETINITIS PIGMENTOSA AND OTHER INHERITED RETINAL DISEASES. DR. HUCKFELDT WILL BE WORKING TO BETTER UNDERSTAND WHAT CAUSES THE POTENTIALLY HARMFUL COLLECTION OF FLUID ASSOCIATED WITH CME, AS WELL AS BETTER WAYS TO TREAT IT.OPTOGENETIC THERAPIES BESTOW LIGHT-SENSITIVITY (VISUAL FUNCTION) TO SURVIVING RETINAL CELLS AFTER PHOTORECEPTORS ARE LOST TO ADVANCED RETINAL DISEASES SUCH AS RETINITIS PIGMENTOSA, USHER SYNDROME, AND AGE-RELATED MACULAR DEGENERATION. HOWEVER, MANY CURRENT OPTOGENETIC THERAPIES IN DEVELOPMENT HAVE LIMITED LIGHT SENSITIVITY AND WILL ONLY WORK IN VERY BRIGHT SETTINGS. JOHN FLANNERY, PH.D., FFB-FUNDED RESEARCHER AT THE UNIVERSITY OF CALIFORNIA, BERKELEY, IS DEVELOPING OPTOGENETIC APPROACHES THAT WILL WORK IN A BROADER SPECTRUM OF LIGHTING CONDITIONS AND POTENTIALLY PROVIDE BETTER PERCEPTION OF DETAILS THAN OTHER OPTOGENETIC ALTERNATIVES IN CLINICAL TRIALS. THE START-UP COMPANY, VEDERE HAS BEEN FORMED TO ADVANCE THE TREATMENT INTO A CLINICAL TRIAL AND OUT TO THE MARKETPLACE. 1689116 171550 PUBLIC HEALTH EDUCATION - DURING FISCAL YEAR 2019, THROUGH OUR CHATLOS FOUNDATION PUBLIC HEALTH EDUCATION PROGRAM, FFB AIMED TO CONTINUE TO PROVIDE EDUCATION AND SUPPORT TO PEOPLE AFFECTED BY RETINAL DEGENERATIVE DISEASES. TO KEEP OUR CONSTITUENTS INFORMED, FFB OPERATES A WEBSITE, BLOG AND SOCIAL MEDIA SITES; DISTRIBUTES A NEWSLETTER, ONLINE AND IN PRINT; HOSTS LOCAL, REGIONAL AND NATIONAL EDUCATIONAL SESSIONS; AND, SUPPORTS FUNDRAISING VISIONWALKS, DINING IN THE DARK DINNERS AND OTHER SPECIAL EVENTS. FFB HELD ITS NATIONAL CONFERENCE, INVESTING IN THE CURES SUMMIT, IN CARY, NC. THE CONFERENCE BROUGHT TOGETHER LEADING VISION SCIENTISTS, ASSISTIVE TECHNOLOGIES EXPERTS, AND THE VISUALLY IMPAIRED COMMUNITY. MORE THAN 30 DISTINGUISHED PANELISTS PRESENTED, WITH APPROXIMATELY XXX PEOPLE IN ATTENDANCE FROM AROUND THE WORLD. INFOCUS, THE NEWSLETTER FOR FRIENDS OF THE FOUNDATION FIGHTING BLINDNESS, IS ANOTHER SIGNIFICANT WAY OF INFORMING OUR CONSTITUENTS. IT IS OFFERED IN PRINT AND ELECTRONICALLY. DURING FISCAL YEAR 2019, FFB ISSUED TWO EDITIONS OF THE NEWSLETTER, THE PRINT EDITIONS WERE CIRCULATED TO APPROXIMATELY 59,000 RECIPIENTS AND THE ELECTRONIC VERSIONS WERE EMAILED TO AN APPROXIMATELY 19,000 RECIPIENTS. CHAPTERS BRING THE FOUNDATION'S MESSAGE AND MISSION TO LIFE. IN FY19, THE FOUNDATION SUPPORTED 35 VOLUNTEER-LED CHAPTERS IN 22 STATES. THE CHAPTERS HELD 46 SPEAKER PRESENTATIONS, SOCIALS AND OTHER OUTREACH ACTIVITIES WHICH MORE THAN 1,380 PEOPLE ATTENDED, AND CO-HOSTED FOUR VISION SEMINARS WITH THE FOUNDATION (IN HOUSTON, TX; JACKSONVILLE, FL; HOFFMANN ESTATES, IL; AND, ANAHEIM, CA) WHICH A TOTAL OF 466 PEOPLE ATTENDED. 3486232 3034364 MY RETINA TRACKER:DURING FISCAL YEAR 2019 APPROXIMATELY 4,300 ADDITIONAL PATIENTS WERE ADDED TO THE REGISTRY, BRINGING TOTAL REGISTERED INDIVIDUALS UP TO 12,669. 24504021 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 1 197 0 1 78 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 18 18 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 7168 COLUMBIA GATEWAY DRIVE NO 100 COLUMBIA MD 21046 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 WILLIAM CARTY DIRECTOR 1.00 X 0 0 0 JASON FERREIRA DIRECTOR 1.00 X 0 0 0 JASON MORRIS 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 BRADFORD MANNING DIRECTOR 1.00 X 0 0 0 EVAN MITTMAN DIRECTOR 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 357150 63026 47395 PATRICIA DUDLEY CHIEF HUMAN RESOURCE OFFICER 40.00 X 177564 0 40157 JASON D MENZO COO 40.00 1.00 X 256711 0 38683 STEPHEN MARK ROSE SR. SCIENTIFIC ADVISOR 40.00 X 248107 0 25358 BRIAN MANSFIELD EXEC VP, RESEARCH 40.00 X 179733 0 30870 HOPE KESSLER SR. DIRECTOR, DEVELOPMENT 40.00 X 249197 0 24065 NANCY M DAVENPORT VP, FINANCE 40.00 X 146106 0 7762 MARK ALAN JONES DIRECTOR, MAJOR GIFTS 40.00 X 134842 0 26072 MICHELE C DIVINCENZO VP, EVENTS & CHAPTERS 40.00 X 125207 0 23211 MICHELE MERCER SR. DIRECTOR, DATABASE 40.00 X 119693 0 27941 PATRICIA ZILLIOX FORMER CHIEF DRUG DEV OFF 0.00 X 0 140751 0 VALERIE NAVY-DANIELS FORMER CHIEF DEV OFFICER 0.00 X 136243 0 12770 2130553 203777 304284 12 1 1 0 SHERATON SAN DIEGO HOTEL 1380 HARBOR ISLAND DRIVE SAN DIEGO CA 92101 VISIONS SEMINAR VENUE 420725 BLACKBAUD PO BOX 930256 ATLANTA GA 31193 ON LINE FUNDRAISING FEES 264612 DP SOLUTIONS 9160 RED BRANCH ROAD SUITE W-1 COLUMBIA MD 21045 COMPUTER CONSULTANT 247465 NNE MARKETING 1666 MASSACHUSETTS AVE SUITE 14 LEXINGTON MA 02420 MEMBERSHIP CONSULTANT 246000 PRODUCTION ADVANTAGE 13873 PARK CENTER ROAD OAKHILL VA 20171 PRINTING/MAIL HOUSE SERVICES 233942 9 176595 7930243 42364481 12721403 50471319 CONFERENCE FEES & SPON 900099 171550 171550 CONTRACT REVENUE 900099 60000 60000 231550 5279923 5279923 191504 191504 32473 0 32473 32473 32473 5960455 8002934 -2042479 -2042479 -2042479 767663 7930243 1662825 -895162 -895162 FFB RDF SERVICE FEES 900099 100000 100000 OTHER INCOME 900099 82 82 100082 53369210 331550 0 2566341 12160924 12160924 3360917 3360917 1810651 523988 271939 1014724 3864007 1130682 568952 2164373 153716 46179 23384 84153 390617 96201 71341 223075 367144 97893 54176 215075 16652 9793 6859 40795 36050 4745 353084 353084 333117 308775 24342 2152138 957933 407933 786272 33334 14690 1285 17359 657964 102144 135740 420080 379975 18356 44606 317013 694168 153108 128625 412435 376665 122101 51334 203230 532511 327522 137240 67749 256533 125129 31369 100035 268584 143489 22485 102610 GENETIC TESTING STUDY 3408184 3408184 NATURAL HISTORY STUDY 735771 735771 PRINTING AND PRODUCTION 705019 107252 35327 562440 871558 871558 33924028 24504021 2340354 7079653 7687395 1763158 16755072 42857611 29204636 26254801 450470 743629 500000 500000 583113 916253 5770877 4441598 1384743 1329279 73061630 83927791 8274816 7800776 137901875 166093298 1637741 1542226 6727999 13980632 526096 316357 1891190 928589 10783026 16767804 X 28938419 36405532 94923682 0 3256748 112919962 127118849 149325494 137901875 166093298 X 19445182 2641526 119937 X 0 1 X 1 0 X 56098521 68515510 22746532 22775761 50471319 220607643 56098521 68515510 22746532 22775761 50471319 220607643 72840728 147766915 2753831 4764598 4320989 4875189 5503900 22218507 102294 102691 100091 101805 100082 506963 243333113 3280942 0.60730 0.61950 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: FFB CRI SERVICE FEES - 2014 AMOUNT: $ 100,000. 2015 AMOUNT: $ 99,996. 2016 AMOUNT: $ 99,996. 2017 AMOUNT: $ 100,000. 2018 AMOUNT: $ 100,000. MISCELLANEOUS - 2014 AMOUNT: $ 2,294. 2015 AMOUNT: $ 2,695. 2016 AMOUNT: $ 95. 2017 AMOUNT: $ 1,805. 2018 AMOUNT: $ 82. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 3256748 208731 74246 9405 3381828 3256748 11279 9028 2251 3256748 3190000 66748 17173 15012 2161 3256748 500000 2690000 23270 21049 2221 3190000 500000 30311 28140 2171 500000 1.00000 0 0 867698 726706 140992 1325749 997036 328713 3577430 2717856 859574 1329279 CHARITABLE GIFT ANNUITY OBLIGATION 706978 DEFERRED RENT 221611 928589 X 56028183 2641527 426079 3078002 6145608 49882575 308775 3177860 3486635 53369210 33896980 426079 3033508 3459587 30437393 308775 3177860 3486635 33924028 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, 2019 AND 2018, 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, 2016. PART XI, LINE 2D - OTHER ADJUSTMENTS: REVENUE FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 3,078,002. PART XI, LINE 4B - OTHER ADJUSTMENTS: ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS 3,177,860. PART XII, LINE 2D - OTHER ADJUSTMENTS: EXPENSES FROM AFFILIATE INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 3,153,445. GRANT REFUNDS -119,937. PART XII, LINE 4B - OTHER ADJUSTMENTS: ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS 3,177,860. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTMAKING 2935917 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 28445 NORTH AMERICA 0 0 PROGRAM SERVICE PROGRAM RELATED TRAVEL 31487 0 0 0 0 0 0 3420849 0 3420849 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 810997 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 469580 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 65000 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 122000 CHECK NORTH AMERICA RESEARCH 75000 CHECK NORTH AMERICA RESEARCH 75000 CHECK EAST ASIA AND THE PACIFIC RESEARCH 75000 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 434296 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 99689 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 521355 CHECK MIDDLE EAST AND NORTH AFRICA RESEARCH 200000 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 100000 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 213000 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 100000 CHECK 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. X X X X X X 1 NNE MARKETING 754 MASSACHUSETTS AVENUE ARLINGTON MA 02476 FUNDRAISING COUNSEL 0 1724258 288000 1436258 THE HERITAGE COMPANY 2402 WILDWOOD AVENUE NORTH LITTLE ROCK AR 72120 TELEMARKETING FUNDRAISING COUNSEL 0 50851 40084 10767 VENTUROUS LLC 269 S BEVERLY DRIVE 1317 BEVERLY HILLS CA 90212 EVENT FUNDRAISING COUNSEL 0 18470 25000 -6530 1793579 353084 1440495 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 DINNER CHICAGO 637354 577618 59736 0 0 4727 65079 5825 49055 NY FASHION DINNER 1527783 1277783 250000 120901 95094 135075 161032 70 6532769 6074842 457927 449548 188650 107852 279987 8697906 7930243 767663 575176 348823 248752 490074 1662825 -895162 1 AUGUSTA UNIV RESEARCH INSTITUTE 1120 15TH STREET AUGUSTA GA 30912 586002053 501(C)(3) 100000 0 RESEARCH COLUMBIA UNIVERSITY 635 WEST 165TH STREET NEW YORK NY 10032 135598093 501(C)(3) 576691 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 FLORIDA STATE UNIVERSITY 600 W COLLEGE AVENUE TALLAHASSEE FL 32306 596152180 501(C)(3) 18000 0 RESEARCH FOUNDATION FIGHTING BLINDNESS RD FUND 7168 COLUMBIA GATEWAY DRIVE COLUMBIA MD 21046 450524687 501(C)(3) 3077860 0 RESEARCH HARVARD UNIVERSITY 243 CHARLES STREET BOSTON MA 02114 042103580 501(C)(3) 43000 0 RESEARCH JOHNS HOPKINS UNIVERSITY 600 NORTH WOLFE STREET BALTIMORE MD 21287 520595110 501(C)(3) 304415 0 RESEARCH MASSACHUSETTS EYE AND EAR INFIRMARY 243 CHARLES STREET BOSTON MA 02114 042103591 501(C)(3) 1482104 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) 274907 0 RESEARCH REGENTS UNIV OF CALIFORNIA 10889 WILSHIRE BLVD LOS ANGELES CA 90095 943067788 501(C)(3) 190308 0 RESEARCH RETINA FOUNDATION OF THE SOUTHWEST 9900 NORTH CENTRAL EXPRESSWAY DALLAS TX 75231 510151514 501(C)(3) 100000 0 RESEARCH STANFORD UNIVERSITY SCHOOL OF MEDICINE SUMC RM L-331 STANFORD CA 94305 941156365 501(C)(3) 100000 0 RESEARCH UNIV OF NC CHAPEL HILL 104 AIRPORT DRIVE CHAPEL HILL NC 27599 566001393 501(C)(3) 545000 0 RESEARCH UNIVERSITY CALIFORNIA SAN FRANCISCO 100 STEIN PLAZA LOS ANGELES CA 90095 956006143 501(C)(3) 498656 0 RESEARCH UNIVERSITY HOSPITALS UH GRANTS DEPT 781686 PO BOX 78000 DETROIT MI 48278 341567805 501(C)(3) 1500380 0 RESEARCH UNIVERSITY OF CALIFORNIA BERKELEY 2150 SHATTUCK AVENUE BERKELEY CA 94720 946002123 501(C)(3) 158682 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 MICHIGAN 100 WALL STREET ANN ARBOR MI 48105 386006309 501(C)(3) 164973 0 RESEARCH UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET PHILADELPHIA PA 19104 232810852 501(C)(3) 600000 0 RESEARCH UNIVERSITY OF PITTSBURGH 123 UNIVERSITY PLACE PITTSBURGH PA 15213 250965591 501(C)(3) 100000 0 RESEARCH UNIVERSITY OF SOUTHERN CALIFORNIA 2001 SOTO STREET LOS ANGELES CA 90089 951642394 501(C)(3) 43000 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) 198767 0 RESEARCH UNIVERSITY OF WISCONSIN 21 NORTH PARK STREET MADISON WI 53715 390743975 501(C)(3) 674181 0 RESEARCH 28 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 1 0 0 0 0 0 0 0 0 BENJAMIN R YERXA CEO 356720 62950 0 0 430 76 14952 2639 25333 4471 397435 70136 0 0 PATRICIA DUDLEY CHIEF HUMAN RESOURCE OFFICER 163628 0 12077 0 1859 0 8339 0 31818 0 217721 0 0 0 JASON D MENZO COO 256591 0 0 0 120 0 13682 0 25001 0 295394 0 0 0 STEPHEN MARK ROSE SR. SCIENTIFIC ADVISOR 245104 0 0 0 3003 0 11894 0 13464 0 273465 0 0 0 BRIAN MANSFIELD EXEC VP, RESEARCH 178677 0 0 0 1056 0 8798 0 22072 0 210603 0 0 0 HOPE KESSLER SR. DIRECTOR, DEVELOPMENT 236109 0 8395 0 4693 0 3975 0 20090 0 273262 0 0 0 NANCY M DAVENPORT VP, FINANCE 140856 0 5000 0 250 0 6789 0 973 0 153868 0 0 0 MARK ALAN JONES DIRECTOR, MAJOR GIFTS 134416 0 0 0 426 0 5691 0 20381 0 160914 0 0 0 PATRICIA ZILLIOX FORMER CHIEF DRUG DEV OFF 0 0 0 0 0 140751 0 0 0 0 0 140751 0 103722 VALERIE NAVY-DANIELS FORMER CHIEF DEV OFFICER 46071 0 0 0 90172 0 1148 0 11622 0 149013 0 0 0 PART I, LINE 1A GROSS UP PAYMENT WAS RECEIVED BY PATRICIA DUDLEY DURING THE CALENDAR YEAR. THIS GROSS UP PAYMENT WAS INCLUDED IN TAXABLE COMPENSATION. PART I, LINE 4A MS. VALERIE NAVY-DANIELS 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 AGREEMENT ARE AVAILABLE TO THE INTERNAL REVENUE SERVICE UPON REQUEST. X 57 12354843 FAIR MARKET VALUE X AUCTION ITEMS 1 299479 FAIR MARKET VALUE X EVENT ITEMS 1 67081 FAIR MARKET VALUE 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 119,937. FOUNDATION FIGHTING BLINDNESS RETINAL DEGENERATION FUND 7168 COLUMBIA GATEWAY DRIVE SUITE 1 COLUMBIA MD 21046 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 7168 COLUMBIA GATEWAY DRIVE SUITE 1 COLUMBIA MD 21046 363923922 FUNDRAISING IL 501(C)(3) LINE 7 FOUNDATION FIGHTING BLINDNESS INC 1 NATIONAL RETINITIS PIGMENTOSA FOUNDATION INC 7168 COLUMBIA GATEWAY DRIVE SUITE 1 COLUMBIA MD 21046 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 3077860 FAIR MARKET VALUE FOUNDATION FIGHTING BLINDNESS RD FUND L 100000 FAIR MARKET VALUE FOUNDATION FIGHTING BLINDNESS RD FUND O 363752 FAIR MARKET VALUE