2024-11-07T06:56:52-06:00 2024-06-30 420714325 RSM US LLP 100 INTERNATIONAL DRIVE SUITE 1400 BALTIMORE MD 21202 990 2023-07-01 450524687 FOUNDATION FIGHTING BLINDNESS RETINAL DEGENERATION FUND FOUN 4104230600 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 PETER GINSBERG CHIEF OPERATING OFFICER, FFB 4104230600 2024-11-05 1 1 JULIA FLANNERY P00928918 4102469301 2024-11-05 2023 2024-10-15 13:58:12Z RUSSELL W KELLEY 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 8751135 0 X WWW.RETINALDEGENERATIONFUND.ORG X 2003 DE THE FOUNDATION FIGHTING BLINDNESS RETINAL DEGENERATION FUND'S MISSION IS TO ACCELERATE THE TRANSLATION OF RETINAL LABORATORY-BASED RESEARCH INTO CLINICAL TRIALS TO EXPEDITE THE COMMERCIALIZATION OF PATIENT THERAPIES. 11 8 10 11 0 0 14920274 8307442 0 0 -5603437 443693 0 0 9316837 8751135 0 0 0 0 845458 1118966 0 0 0 169416 190719 1014874 1309685 8301963 7441450 47303067 52460807 65457 85288 47237610 52375519 X THE FOUNDATION FIGHTING BLINDNESS RETINAL DEGENERATION FUND'S MISSION IS TO ACCELERATE THE TRANSLATION OF RETINAL LABORATORY-BASED RESEARCH INTO CLINICAL TRIALS TO EXPEDITE THE COMMERCIALIZATION OF PATIENT THERAPIES. 0 0 1273456 THE THREE LARGEST PROGRAM SERVICES ACCOMPLISHMENTS (AS MEASURED BY INVESTMENT SIZE) FOR THE FOUNDATION FIGHTING BLINDNESS RETINAL DEGENERATION FUND (FFB-RDF) DURING FISCAL YEAR 2024 WERE EQUITY INVESTMENTS IN OPUS GENETICS, OSANNI BIO, AND ATSENA THERAPEUTICS. OPUS GENETICS, ATSENA THERAPEUTICS AND OSANNI BIO ARE ALL CLINICALLY STAGED THERAPY COMPANIES. EACH OF THESE COMPANIES IS FOCUSED ON ADVANCING PROMISING THERAPIES FOR RETINAL DEGENERATIVE DISEASES.FISCAL 2024 SUMMARY:FFB-RDF INVESTED AN ADDITIONAL $1,449,835 IN OPUS GENETICS TO HELP ADVANCE ITS PIPELINE OF ORPHAN INHERITED RETINAL DISEASE GENE THERAPY INDICATIONS INCLUDING LCA5, BEST1, RHO, RDH12 AND MERTK. THE FIRST PATIENT WAS DOSED IN THE LCA5 PHASE I/II CLINICAL TRIAL IN AUGUST 2023. FFB-RDF INVESTED $2,807,443 IN ATSENA THERAPEUTICS TO SUPPORT THE ADVANCEMENT OF TWO CLINICALLY STAGED GENE THERAPY ASSETS FOR LCA1 AND XLRS, AND THE PRECLINICAL DEVELOPMENT OF GENE THERAPY ASSETS TOWARDS USH1B AND STARGARDT'S DISEASE. FFB-RDF INVESTED $3,000,000 IN OSANNI BIO TO SUPPORT THE ADVANCEMENT OF TWO CLINICALLY STAGED ASSETS AIMED AT REDUCING DRUSEN IN DRY AGE-RELATED MACULAR DEGENERATION AND GEOGRAPHIC ATROPHY. 1273456 1 1 0 0 0 0 0 0 0 0 0 0 1 1 0 1 0 1 0 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 4 0 1 10 1 0 0 0 0 0 0 0 0 0 0 0 0 X 11 8 0 0 0 0 1 1 0 1 1 0 0 1 1 1 1 1 1 0 0 1 1 X X PETER GINSBERG 4104230600 6925 OAKLAND MILLS ROAD 701 COLUMBIA MD 21045 X MARK BLUMENKRANZ MD MMS DIRECTOR 1.00 X 0 0 0 DAVID BRINT EX OFFICIO DIRECTOR 1.00 10.00 X 0 0 0 WARREN THALER DIRECTOR 1.00 1.00 X 0 0 0 JOSE-ALAIN SAHEL MD DIRECTOR 1.00 1.00 X 0 15000 0 ADRIENNE GRAVES PHD CHAIRMAN 1.00 1.00 X 0 0 0 KELLY LISBAKKEN DIRECTOR 1.00 X 0 0 0 JACQUE DUNCAN MD DIRECTOR 1.00 5.00 X 0 75000 0 JONATHAN STEINBERG MD DIRECTOR 1.00 1.00 X 0 0 0 TONY ADAMIS MD DIRECTOR 1.00 X 0 0 0 JEAN BENNETT MD PHD DIRECTOR 1.00 X 0 0 0 CATHERINE BOWES RICKMAN PHD DIRECTOR 1.00 1.00 X 0 15000 0 JASON D MENZO CEO 8.00 32.00 X 104122 416489 68385 RUSSELL W KELLEY MANAGING DIRECTOR, RD FUND 40.00 0.00 X 347534 0 64959 PETER GINSBERG COO 8.00 32.00 X 72505 290019 63272 ALICIA KEMBLE SENIOR VENTURE ASSOCIATE 40.00 X 135548 0 21753 659709 811508 218369 3 0 1 0 0 8307442 8307442 283756 283756 159937 0 159937 159937 159937 8751135 0 0 443693 641421 641421 290912 290912 42047 42047 94133 94133 50453 50453 3120 3120 44882 41078 3804 28023 28023 5772 5772 22221 22221 51616 51616 26699 26699 PRINTING & SUBSCRIPTION 8386 7104 1282 1309685 1273456 36229 0 313572 123509 1965012 3250000 6199 750 37780078 42666783 7238206 6419765 47303067 52460807 65457 85288 65457 85288 X 47237610 52375519 47237610 52375519 47303067 52460807 X 7441450 -2303541 X 0 1 X 1 0 X X X 1 THE FOUNDATION FIGHTING BLINDNESS INC 237135845 7 1 8307442 0 1 8307442 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 SPARING VISION 12407036 C ATSENA THERAPEUTICS 12553608 C NACUITY 4000000 C LOOKOUT THERAPEUTICS, INC. 361382 F CHECKEDUP 427057 C SALIOGEN 1999983 C OPUS GENETICS 3416987 F AMBER BIO 1799999 C PERCEIVE BIO 2564098 C PERCEIVE PHARMA 136634 C OSANNI BIO 2999999 C 42666783 DUE FROM RELATED PARTY 6303801 ACCRUED INTEREST RECEIVABLE 115964 6419765 X 38635750 29884615 29884615 8751135 0 8751135 41108157 39798472 39798472 1309685 0 1309685 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 40,495,598. LOSS ON EQUITY METHOD INVESTMENTS -2,303,541. ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS -8,307,442. PART XII, LINE 2D - OTHER ADJUSTMENTS: EXPENSES FROM AFFILIATES INCLUDED ON CONSOLIDATED FINANCIAL STATEMENTS 48,105,914. ELIMINATION ENTRY INCLUDED ON FINANCIAL STATEMENTS -8,307,442. EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 PROGRAM SERVICES TRAVEL 13130 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 INVESTMENT 12407036 0 0 0 0 0 0 12420166 0 12420166 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 JASON D MENZO CEO 84139 336556 19911 79645 72 288 3664 14656 10013 40052 117799 471197 0 0 PETER GINSBERG COO 63310 253239 8989 35954 206 826 3725 14901 8929 35717 85159 340637 0 0 RUSSELL W KELLEY MANAGING DIRECTOR, RD FUND 296734 0 50248 0 552 0 18571 0 46388 0 412493 0 0 0 ALICIA KEMBLE SENIOR VENTURE ASSOCIATE 135478 0 0 0 70 0 6450 0 15303 0 157301 0 0 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-DETERMINED ORGANIZATION AND INDIVIDUAL PERFORMANCE CRITERIA. SCHEDULE J, PART I, LINE 3: THE FOUNDATION FIGHTING BLINDNESS, INC., A RELATED ORGANIZATION, ESTABLISHES THE COMPENSATION FOR THE ORGANIZATION'S EMPLOYEES. THE FOUNDATION FIGHTING BLINDNESS, INC. USES A COMPENSATION COMMITTEE, INDEPENDENT COMPENSATION CONSULTANT, 990 OF OTHER ORGANIZATIONS, A COMPENSATION SURVEY OR STUDY, AND APPROVAL BY THE BOARD OR COMPENSATION COMMITTEE. FORM 990, PART VI, SECTION A, LINE 6 THE SOLE MEMBER OF FFB RD FUND IS THE FOUNDATION FIGHTING BLINDNESS, INC. (FFB). FORM 990, PART VI, SECTION A, LINE 7A FFB ELECTS THE DIRECTORS OF FFB RD FUND ANNUALLY AS NEEDED. 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. 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 C, LINE 19 FFB RD FUND'S FEDERAL FORM 990 TAX RETURN AND CONSOLIDATED AUDIT ARE AVAILABLE AT ITS SUPPORTED ORGANIZATION'S WEBSITE, WWW.FIGHTINGBLINDNESS.ORG. OTHER PUBLIC GOVERNING 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: THE FOUNDATION FIGHTING BLINDNESS, INC. (FFB), A RELATED ORGANIZATION, ACTS AS THE COMMON PAYMASTER FOR FFB RD FUND. FFB ALSO APPROVES AND REVIEWS ANY COMPENSATION TO OFFICERS, DIRECTORS, TRUSTEES AND KEY EMPLOYEES OF FFB RD FUND IN CONFORMANCE WITH THEIR COMPENSATION DETERMINATION POLICY. BOARD MEMBERS WERE NOT COMPENSATED FOR THEIR SERVICE ON THE BOARD, BUT SOME RECEIVED STIPENDS FOR SERVING ON THE FFB'S SCIENTIFIC ADVISORY BOARD. FORM 990, PART XI, LINE 9: LOSS ON EQUITY METHOD INVESTMENT -2,303,541. THE FOUNDATION FIGHTING BLINDNESS INC 6925 OAKLAND MILLS RD 701 COLUMBIA MD 21045 237135845 RESEARCH MD 501(C)(3) LINE 7 N/A 0 MACULAR DEGENERATION INTERNATIONAL INC 6925 OAKLAND MILLS RD 701 COLUMBIA MD 21045 363923922 FUNDRAISING IL 501(C)(3) LINE 7 FOUNDATION FIGHTING BLINDNESS INC 0 NATIONAL RETINITIS PIGMENTOSA FOUNDATION 6925 OAKLAND MILLS RD 701 COLUMBIA MD 21045 522072391 FUNDRAISING MD 501(C)(3) LINE 12A, I FOUNDATION FIGHTING BLINDNESS INC 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0