2013-11-04T16:18:36-06:00 2013-06-30 521511275 Raffa PC 1899 L Street NW Suite 900 Washington DC 20036 990 2012-07-01 237135845 The Foundation Fighting Blindness Inc FOUN 4104230600 7168 Columbia Gateway Drive No 100 Columbia MD 21046 Annette Hinkle 4104230600 2013-11-04 1 Frank H Smith P00639053 2028225000 2013-11-01 2012 2015-11-30 17:44:51Z Annette Hinkle 7168 Columbia Gateway Drive No 100 Columbia MD 21046 133121249 0 X www.fightblindness.org X 1971 MD FFB funds research to discover causes and cures for retinal diseases leading to blindness. 25 25 106 2500 0 0 38553517 40828587 113715 328270 1639783 2196517 -677402 -688965 39629613 42664409 15724312 11850463 0 0 7479697 7404141 176306 381920 7612726 6345047 6317052 29725362 25953576 9904251 16710833 60105388 73618451 17120795 15872986 42984593 57745465 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 13666629 11850463 200350 Research - FFB funded researchers and clinicians have further developed retinal treatments using gene, cell based, neuroprotective, and nutritional therapies. Many of these therapies have led us into a new era of human clinical trials. Today, we can correct human genetic defects that cause blindness and restore vision. We can create, from stem cells, new retinal cells that sense light. We can slow and stop disease progression through a protein-dispensing capsule implanted in the eye. We can create a "bionic eye," first-generation technology that provides functional vision to the blind.FFB, along with its supporting organization FFB Clinical Research Institute, was successful in increasing its revenue this year and dedicated nearly 78% of its overall revenue to current and future research, oversight of that research and public health education programs. Although actual grant awards were not as great this year due to prioritization of research opportunities, FFB has dedicated and set aside nearly $15 million for future research. This allows FFB the flexibility and opportunity to invest in future, large-scale studies and clinical trials when they become available to ensure our ability to eradicate devastating retinal diseases. 2506950 127920 Public Health Education - FFB funded health education programs reach over 250,000 people through educational seminars, newsletters, web based information, and community outreach through FFB's approximately 50 chapters around the U.S. and through partnerships with numerous retinal specialists. 16173579 1 1 0 0 0 0 0 0 0 1 1 1 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 0 0 0 1 183 0 1 106 1 0 0 0 0 0 1 1 0 0 0 0 X 25 25 1 0 0 0 1 1 0 1 1 0 1 1 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 X X Annette Hinkle 4104230600 7168 Columbia Gateway Drive 100 Columbia MD 21046 X Gordon Gund 10.00 X X 0 0 0 Jeremiah Shaw 1.00 X X 0 0 0 Edward Gollob 1.00 X X 0 0 0 Joel Davis 1.00 X X 0 0 0 David Brint 1.00 X X 0 0 0 Haynes Lea 1.00 X X 0 0 0 Yvonne Chester 1.00 X X 0 0 0 Steve Alper 1.00 X 0 0 0 Gregory Austin 1.00 X 0 0 0 Daniel Bergstein 1.00 X 0 0 0 Marilyn Green 1.00 X 0 0 0 Alan Kahn 1.00 X 0 0 0 James McNiel 1.00 X 0 0 0 Nancy Mendelow 1.00 X 0 0 0 Evan Mittman 1.00 X 0 0 0 Karen Petrou 1.00 X 0 0 0 Nancy Pollak 1.00 X 0 0 0 Edward Russnow 1.00 X 0 0 0 Bruce Sawyer 1.00 X 0 0 0 Debbie Shaw 1.00 X 0 0 0 Moira Shea 1.00 X 0 0 0 Warren Thaler 1.00 X 0 0 0 George Villere 1.00 X 0 0 0 David Walsh 1.00 X 0 0 0 Ted Welp 1.00 X 0 0 0 William Schmidt 40.00 1.00 X 326486 0 10244 James Minow 40.00 X 242811 0 16312 Patricia Zillox 40.00 1.00 X 228340 0 7883 Stephen Rose 40.00 X 214787 0 23512 Annette Hinkle 40.00 1.00 X 193700 0 12169 Pat Dudley 40.00 X 139118 0 20749 Susan Brumley 40.00 X 157708 0 16790 Brian Mansfield 40.00 X 155812 0 21544 Lorraine Hirsch 40.00 X 118998 0 4469 Tim Schoen 40.00 1.00 X 110321 0 19998 Michele Mercer 40.00 X 102769 0 14919 1990850 0 168589 13 0 1 0 Production Advantage 13873 Park Center Road Suite 15 Oak Hill VA 20171 Printing services 329682 Hyatt Regency Minneapolis PO Box 86012 Minneapolis MN 55486 Conference venue 229719 DP Solutions 9160 Red Branch Road Suite W-1 Columbia MD 21045 IT services 227159 Convio Inc PO Box 671445 Dallas TX 75267 Online fundraising 224331 Caskey Group 850 Vogelsong Road York PA 17404 Printing services 186200 11 191177 11213278 29424132 7544710 40828587 Contract revenue 900099 200350 200350 Conference fees 900099 127920 127920 328270 2327645 2327645 88660460 88791588 -131128 -131128 -131128 816863 11213278 1639318 -822455 -822455 14571 25934 -11363 -11363 FFB CRI service fees 900099 99900 99900 Sublease income 900099 32473 32473 Research patent 900099 12480 12480 144853 42664409 328270 0 1507552 10171257 10171257 1679206 1679206 1465997 682268 432966 350763 4717574 1230538 574595 2912441 86890 24812 3696 58382 672361 175711 110607 386043 461319 135418 64558 261343 14618 8173 6445 71597 66555 5042 381920 381920 175463 161583 13880 750430 494362 61416 194652 1083334 133384 153338 796612 370956 63460 307496 603997 77493 100032 426472 456443 108996 30164 317283 805664 580002 73620 152042 480070 313117 27435 139518 161316 46997 23044 91275 Printing & production 992745 227774 15916 749055 Miscellaneous 350419 28784 259573 62062 25953576 16173579 2167271 7612726 5929922 2372214 6189 6209 6452717 4791757 711053 959053 470628 562476 5686485 3184897 1806019 2501588 39235957 55995664 5396099 6365579 96804 63911 60105388 73618451 2447013 2089833 13326558 12406812 324008 228755 1023216 1147586 17120795 15872986 X 4811606 7223133 37672987 50022332 500000 500000 42984593 57745465 60105388 73618451 16710833 -1976360 26400 0 X 0 1 X 1 1 1 X 27483731 30918188 36268303 38553517 40828587 174052326 27483731 30918188 36268303 38553517 40828587 174052326 61719360 112332966 483120 368024 717281 1671104 2360118 5599647 158807 185097 155990 162804 112380 775078 180427051 5199187 0.62260 0.67310 X Schedule A, Part II, Line 10, Explanation of Other Income: FFB CRI service fees Miscellaneous Research patent RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 500000 14507 12469 2038 500000 500000 19092 17076 2016 500000 500000 32633 29953 2680 500000 500000 54476 52024 2452 500000 500000 38341 36101 2240 500000 1.00000 0 0 914852 209676 705176 1457383 1017779 439604 3314250 1957442 1356808 2501588 Charitable gift annuity funds 711479 F Pooled income funds 44960 F Beneficial interest in remainder trusts 5609140 F 6365579 Pooled income fund obligation 9723 Charitable gift annuity obligation 731070 Deferred compensation obligation 406793 1147586 X 44754196 -1976360 135505 5193919 3353064 41401132 1263277 1263277 42664409 29892922 109111 5093512 5202623 24690299 1263277 1263277 25953576 Description of Intended Use of Endowment Funds: Part V, Line 4: The income earned on these net assets is restricted by the donors for research. Investment earnings on endowment funds are expended for the restricted purpose required in the year earned. Description of Uncertain Tax Positions Under FIN 48: Part X, Line 2: The Foundation has performed an evaluation of its uncertain tax positions for the year ended June 30, 2013, 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. Part XI, Line 2d - Other Adjustments: Subsidiary revenue included on consolidated financial statements 5,193,919. Part XI, Line 4b - Other Adjustments: Intercompany grants and management fee 1,263,277. Part XII, Line 2d - Other Adjustments: Subsidiary expenses included on consolidated financial statements 5,093,512. Part XII, Line 4b - Other Adjustments: Intercompany grants and management fee 1,263,277. 1 Europe (including Iceland and Greenland) 0 0 Grantmaking 1456206 Middle East and North Africa 0 0 Grantmaking 148000 South Asia 0 0 Grantmaking 75000 0 0 0 0 0 0 1679206 0 1679206 Europe (including Iceland and Greenland) Research 361300 Check Europe (including Iceland and Greenland) Research 334347 Check Europe (including Iceland and Greenland) Research 260378 Check Europe (including Iceland and Greenland) Research 200000 Check Middle East and North Africa Research 100000 Check Europe (including Iceland and Greenland) Research 99681 Check Europe (including Iceland and Greenland) Research 75000 Check Europe (including Iceland and Greenland) Research 75000 Check South Asia Research 75000 Check Europe (including Iceland and Greenland) Research 50500 Check Middle East and North Africa Research 48000 Check 0 8 0 0 0 0 0 0 Procedure for Monitoring Grants Outside the U.S.: Schedule F, 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 Events with Ginger & Co 717 Harding Street Westfield NJ 07090 Special Event Fundraising Counsel 0 653075 18335 634740 Dina Beaumont 9720 Owen Brown Road Columbia MD 21045 Special Event Fundraising Counsel 0 595235 82524 512711 Strategic Fundraising 7591 9th Street N St Paul MN 55128 Telemarketing Fundraising Counsel 0 230018 125436 104582 NNE Marketing 724 Massachusetts Avenue Arlington MA 02476 Fundraising Counsel 0 0 86150 -86150 Charity Dynamics 3420 Executive Center Drive G-100 Austin TX 78731 Fundraising Counsel 0 0 69475 -69475 1478328 381920 1096408 AL AK AZ AR CA CO CT DE DC FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY Chicago Dinner 748588 692038 56550 36250 40691 21300 14413 NY Visionary Award 460965 408165 52800 43788 7015 7871 86 10820588 10113075 707513 320915 792149 66724 288202 12030141 11213278 816863 357165 876628 95039 310486 1639318 -822455 1 Foundation Fighting Blindness Clinical Research 7168 Columbia Gateway Drive Columbia MD 21046 450524687 501(c)(3) 1163377 Research University of Iowa 2 Gilmore Hall Iowa City IA 52242 237436761 501(c)(3) 1000000 Research Applied Genetic Technologies 11801 Research Drvie Suite D Alachua FL 32615 593533710 N/A 500000 Research Harvard University 243 Charles Street Boston MA 02114 042103580 501(c)(3) 338200 Research The Cleveland Clinic Foundation 9500 Euclid Avenue Cleveland OH 44195 340714585 501(c)(3) 336371 Research University of Iowa 200 Hawkins Drive Iowa City IA 52242 237436761 501(c)(3) 329000 Research University of California San Francisco 100 Stein Plaza Los Angeles CA 90095 956006143 501(c)(3) 297849 Research Oregon Health and Science University 3375 Terwilliger Boulevard SW Portland OR 97201 237083114 501(c)(3) 294545 Research Cornell University 373 Pine Tree Street Ithaca NY 14850 150532082 501(c)(3) 270000 Research University of Pennsylvania 422 Curie Blvd Philadelphia PA 19104 232810852 501(c)(3) 250057 Research University of Florida College of Medicine 219 Grinter Hall Gainesville FL 32611 592729133 501(c)(3) 225000 Research University of Michigan 3003 South State Street Ann Arbor MI 48109 386006309 501(c)(3) 217461 Research Columbia University Medical Center 630 West 168th Street New York NY 10032 135598093 501(c)(3) 211303 Research Scheie Eye Institute 3535 Market Street Philadelphia PA 19104 231352685 501(c)(3) 210000 Research The Cleveland Clinic Foundation 9500 Euclid Avenue Cleveland OH 44195 340714585 501(c)(3) 200000 Research Retina Foundation of the Southwest 9900 North Central Expressway Dallas TX 75231 510151514 501(c)(3) 197099 Research Michigan State 426 Auditorium Road East Lansing MI 48824 386005984 501(c)(3) 153585 Research University of Oklahoma Health Science Center 1000 Stanton L Young Blvd Oklahoma City OK 73117 730762267 501(c)(3) 152087 Research University of California Los Angeles 100 Stein Plaza Los Angeles CA 90095 956006143 501(c)(3) 104827 Research Baylor College of Medicine One Baylor Plaza Houston TX 77030 741613878 501(c)(3) 100000 Research Foundation of UMDNJ 90 Bergen Street Newark NJ 07103 237313160 501(c)(3) 100000 Research Johns Hopkins University 600 North Wolfe Street Baltimore MD 21287 520595110 501(c)(3) 100000 Research Massachusetts Eye and Ear Infirmary 243 Charles Street Boston MA 02114 042103591 501(c)(3) 100000 Research NYU Medical Center 545 First Avenue GBH-SC1-81 New York NY 10016 135562308 501(c)(3) 100000 Research Tufts Univ School of Medicine 800 Washington Street Box 817 Boston MA 02111 042103634 501(c)(3) 100000 Research Univ Mass Medical Center S6-408 55 Lake Avenue North Worchester MA 01655 043167352 501(c)(3) 100000 Research Univ of Cal Berkeley 2150 Shattuck Avenue Berkeley CA 94720 946002123 501(c)(3) 100000 Research Univ of Cal Berkeley 2150 Shattuck Avenue Berkeley CA 94720 946002123 501(c)(3) 100000 Research University of Florida Box 115500 Gainesville FL 32610 592729133 501(c)(3) 100000 Research University of Florida PO Box 100284 Gainesville FL 32610 592729133 501(c)(3) 100000 Research University of Florida PO Box 100284 Gainesville FL 32610 592729133 501(c)(3) 100000 Research University of Minnesota 200 Oak Street Minneapolis MN 55455 416007513 501(c)(3) 100000 Research University of Oklahoma Health Sciences 608 Stanton L Young Blvd Oklahoma City OK 73104 730762267 501(c)(3) 100000 Research University of Pennsylvania 3900 Delancy Street Philadelphia PA 19104 232810852 501(c)(3) 100000 Research Indiana University 509 East Third Street Bloomington IN 47401 356001673 501(c)(3) 99964 Research University of California San Francisco 3333 California St Suite 315 San Francisco CA 94148 946036494 501(c)(3) 99923 Research Medical College of Wisconsin 8701 Watertown Plank Road Milwaukee WI 53226 139080626 501(c)(3) 99553 Research Shiley Eye Center 9500 Gilman Dr MC 0009 LA Jolla CA 92093 956006144 501(c)(3) 99446 Research University of Texas Health Science Center 1200 Herman Pressler Drive Houston TX 77030 741761309 501(c)(3) 97283 Research The Schepens Eye Research Institute 20 Staniford Street Boston MA 02114 042129889 501(c)(3) 92965 Research University of Texas Health Science Center PO Box 20036 Houston TX 77225 741761309 501(c)(3) 92748 Research University of Kentucky 109 Kinkead Hall Lexington KY 40506 616033693 501(c)(3) 90738 Research Emory University 1599 Clifton Road Atlanta GA 30322 580566256 501(c)(3) 90068 Research Medical University of South Carolina 167 Ashley Avenue Charleston SC 29425 576028985 501(c)(3) 89440 Research Foundation of UMDNJ 90 Bergen Street Newark NJ 07103 237313160 501(c)(3) 88837 Research University of Florida PO Box 100284 Gainesville FL 32610 592729133 501(c)(3) 87551 Research Stanford University School of Medicine SUMC RM L-331 Stanford CA 94305 941156365 501(c)(3) 78107 Research Oregon Health and Science University 2525 SW 1st Avenue Portland OR 97201 237083114 501(c)(3) 75000 Research Univ of Illinois at Chicago 1905 W Taylor Street Chicago IL 60612 376006007 501(c)(3) 75000 Research University of Florida PO Box 100284 Gainesville FL 32610 592729133 501(c)(3) 75000 Research University of Iowa 375 Newborn Road Iowa City IA 52245 237436761 501(c)(3) 75000 Research University of Kentucky 109 Kinkead Hall Lexington KY 40506 616033693 501(c)(3) 75000 Research University of Michigan 100 Wall Street Ann Arbor MI 48105 386006309 501(c)(3) 75000 Research Helen Wills Neuroscience Institute 112 Barker Hall Berkeley CA 94720 946090626 501(c)(3) 74836 Research University of Pennsylvania 3451 Walnut Street Philadelphia PA 19104 232810852 501(c)(3) 70000 Research Columbia University 635 West 165th Street New York NY 10032 135598093 501(c)(3) 65000 Research University of Utah 75 South 2000 East Salt Lake City UT 84132 237112869 501(c)(3) 65000 Research University of Utah 75 South 2000 East Salt Lake City UT 84132 237112869 501(c)(3) 57000 Research Retina Foundation of the Southwest 9900 North Central Expressway Dallas TX 75231 510151514 501(c)(3) 50086 Research University of Florida 1600 SW Archer Road Gainesville FL 32610 592729133 501(c)(3) 50000 Research University of Utah School of Medicine 65 N Medical Drive Salt Lake City UT 84132 237112869 501(c)(3) 50000 Research Univ of Massachussets Medical School 55 Lake Avenue North Worchester MA 01655 043167352 501(c)(3) 45261 Research University of California San Diego 9500 Gilman Drive La Jolla CA 92037 956006144 501(c)(3) 40000 Research Case Western Reserve Univesity 10900 Euclid Avenue Cleveland OH 44106 341018992 501(c)(3) 35000 Research University of Pennsylvania 422 Curie Blvd Philadelphia PA 19104 232810852 501(c)(3) 28000 Research Various prior year refunds and misc -66310 Research 45 1 Procedure for Monitoring Grants in the U.S.: Part I, Line 2: Schedule I, 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 0 0 0 0 0 0 0 0 0 William Schmidt 326486 0 0 0 0 0 8268 0 1976 0 336730 0 0 0 James Minow 242811 0 0 0 0 0 6141 0 10171 0 259123 0 0 0 Patricia Zillox 228340 0 0 0 0 0 5757 0 2126 0 236223 0 0 0 Stephen Rose 214787 0 0 0 0 0 5596 0 17916 0 238299 0 0 0 Annette Hinkle 193700 0 0 0 0 0 4889 0 7280 0 205869 0 0 0 Pat Dudley 139118 0 0 0 0 0 3448 0 17301 0 159867 0 0 0 Susan Brumley 157708 0 0 0 0 0 4128 0 12662 0 174498 0 0 0 Brian Mansfield 155812 0 0 0 0 0 4126 0 17418 0 177356 0 0 0 X 34 6732928 Fair Market Value X Event items 811782 Fair Market Value 0 1 0 Form 990, Part VI, Section A, line 2 Jeremiah H. Shaw, Vice Chairman, has a family relationship with Debbie Shaw, Director. Eddie Russnow, Director, has a family relationship with Edward Gollob, President. 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 electon 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 11 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 Chief Financial Officer. With the CFO's approval the draft federal Form 990 is then made available to all Board members who are also invited to a special meeting of the Finance Committee to review the federal Form 990 before filing. Form 990, Part VI, Section B, line 12c Conflict of interest policy forms are obtained upon Board election and hiring. New forms are obtained at the beginning of every fiscal year. Senior management and Board members are aware that conflict of interests must be documented and disclosed to the Board of Directors. Finance staff review activity throughout the year for proper disclosure. Form 990, Part VI, Section B, line 15 As part of the annual budget process, FFB reviews all salaries and performances, including officers and key employees, in order to determine appropriate salary adjustments. An overall increase pool, based on feedback from market data, is approved by the Board of Directors for use in this process. 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, Form 1023 and consolidated audited financial statements are available at www.fightblindness.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. Part VII FFB acts as the common paymaster for the Foundation Fighting Blindness Clinical Research Institute, a related organization. Foundation Fighting Blindness Clinical Research Institute 7168 Columbia Gateway Drive Suite 1 Columbia MD 21046 450524687 Research DE 501(c)(3) Line 11a Foundation Fighting Blindness 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 1 National Retinitis Pigmentosa Foundation 7168 Columbia Gateway Drive Suite 1 Columbia MD 21046 522072391 Fundraising MD 501(c)(3) Line 11a Foundation Fighting Blindness 1 0 1 0 0 0 0 0 0 0 0 0 1 0 1 1 0 0 0 0 Foundation Fighting Blindness Clinical Research Institute B 1163377 FMV Foundation Fighting Blindness Clinical Research Institute L 99900 FMV Foundation Fighting Blindness Clinical Research Institute O 583848 FMV