2014-07-15T08:55:35-05:00 2013-12-31 BDO USA LLP 8405 GREENSBORO DRIVE 7TH FLOOR MCLEAN VA 22102 990 2013-01-01 912059167 CYSTIC FIBROSIS FOUNDATION THERAPEUTICS INC % ROBERT J BEALL PHD CYST 3019514422 6931 ARLINGTON ROAD Suite 200 BETHESDA MD 20814 ROBERT J BEALL PHD PRESIDENT & CEO 7038930600 2014-06-30 true Jeffrey J Schragg 7038930600 2013 2015-11-30 17:44:51Z ROBERT J BEALL PHD 6931 ARLINGTON ROAD STE 200 BETHESDA MD 20814 257414279 false X www.CFF.ORG/RESEARCH/CFFT/ X 2000 MD THE MISSION IS TO CURE CYSTIC FIBROSIS AND TO PROVIDE ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES. 7 6 29 0 0 0 0 0 192984 223471 0 0 156491789 257190808 156684773 257414279 116651304 210196981 0 0 3695781 4951732 0 0 0 36337688 42265566 156684773 257414279 0 41843226 55984395 41843226 55984395 0 0 THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION, A NONPROFIT DONOR SUPPORTED ORGANIZATION, IS TO CURE CYSTIC FIBROSIS AND TO PROVIDE ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES BY FUNDING RESEARCH AND DRUG DEVELOPMENT AND PROMOTING INDIVIDUALIZED TREATMENT. A LIFE-SHORTENING GENETIC DISEASE, CF AFFECTS THE LUNGS AND DIGESTIVE SYSTEMS OF NEARLY 30,000 CHILDREN AND YOUNG ADULTS IN the U.S. CURRENTLY, THERE IS NO CURE. The mission is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives. false false 47013294 Investments by Cystic Fibrosis Foundation Therapeutics (CFFT) in state-of-the-art research have accelerated progress toward developing new CF treatments and finding a cure for the disease. By funding CF drug discovery and development research conducted by biotechnology companies and providing matching awards to CF drug developers for CF research, and with a specialized CF clinical trials network, CFFT has attracted significant industry involvement in the fight against CF. CFFT accomplishes its mission by funding life-saving research to develop effective therapies for people with CF. CFFT has funded hundreds of millions of dollars of research costs to help develop CF drugs and therapies. Through CFFT's efforts, the life expectancy of people with CF has doubled in the last 30 years, and research to find a cure is more promising than ever before. 209668066 40497213 223471 CFFT supports a national clinical research network consisting of nearly 80 CF Foundation-accredited care centers that collaborate to conduct clinical trials, allowing potential new CF therapies to move to larger, late-stage studies more quickly. Medical programs in 2013 consisted of costs to support scientific study and investigations. 141 grants were awarded in 2013. 256681360 true false false false false false false false false true false false true false false false true false false true true false false false false false true false true false false false false false false false false false false false false false true false false false true 74 0 true 29 true false false false false false false false false false false X 7 6 false false false false false true false true true false false true true true true true true true true false MI X X ROBERT J BEALL PHD 3019514422 6931 ARLINGTON ROAD STE 200 BETHESDA MD 20814 Christy Shaffer PHD CHAIR 5.0 6.0 X 0 0 0 JASON M ARYEH DIRECTOR 3.0 X 0 0 0 STEVEN SHAK MD DIRECTOR 3.0 6.0 X 0 0 0 CATHERINE C MCLOUD DIRECTOR 3.0 11.0 X 0 0 0 JONATHAN COHN MD director 3.0 X 0 0 0 D Paul Flessner Director 3.0 X 0 0 0 Robert J Beall PhD President & CEO 20.0 40.0 X X 364564 737313 261787 Preston W Campbell MD Exec VP of Medical Affairs 20.0 40.0 X 394239 796908 202914 C Richard Mattingly Exec VP, COO AND SECRETARY 5.0 55.0 X 0 752470 220754 Vera H Twigg EXEC VP and CFO 5.0 55.0 X 0 486851 91349 BRUCE MARSHALL MD VP OF CLINICAL AFFAIRS 50.0 X 379325 0 31552 THEODORE J TORPHY PHD HEAD OF RESEARCH STRATEGY 16.0 X 215600 0 0 MARTIN MENSE PRINCIPAL SCIENTIST DRUG DISC 50.0 X 185473 0 42920 Hermann Bihler PHD Senior Scientist 50.0 X 146553 0 12989 CYNTHIA GEORGE MSN FNP BC DIR OF CLINICAL RES RESOURCES 50.0 X 127454 0 13478 1813208 2773542 877743 12 false true false VERTEX PHARMACEUTICALS LLC 50 NORTHERN AVENUE BOSTON MA 02210 CONTRACTED RESEARCH 20281486 PFIZER INC 200 CAMBRIDGEPARK DR CAMBRIDGE MA 02140 contracted research 10449569 PROTEOSTASIS THERAPEUTICS INC 200 TECHNOLOGY SQUARE CAMBRIDGE MA 02139 CONTRACTED RESEARCH 2070083 CHANTEST INC 14556 NEO PARKWAY CLEVELAND OH 44128 RESEARCH SUPPORT 1950000 MORGAN STANLEY CO LLC 1 PIERREPONT PLAZA 7TH FLOOR BROOKLYN NY 11201 transaction advisory 1879333 14 0 CLINICAL STUDY 541900 108410 108410 REFUNDED OR CANCELLED GRANTS 900099 115061 115061 223471 0 0 257190808 257190808 0 0 0 0 0 0 0 0 257414279 223471 257190808 207414076 207414076 0 2782905 2782905 0 880483 784935 95548 0 3570839 3183340 387499 185148 165056 20092 40949 36505 4444 274313 242412 31901 0 256886 256886 3850 3850 0 0 0 82970 55962 27008 0 641423 605065 36358 642349 595409 46940 0 570661 521691 48970 149288 139506 9782 0 89110 83897 5213 0 0 274164 265437 8727 139624 139624 CONTRACTED RESEARCH 38740581 38740581 CHEMISTRY 151560 151560 MEDICAL ADVISORY FEES 360989 360989 MISCELLANEOUS 162111 155524 6587 0 257414279 256681360 732919 0 0 0 3343624 4019774 0 0 441065 412310 0 0 0 0 0 0 0 0 131119 278678 1665274 611478 704389 1053796 0 0 0 0 0 0 0 0 37223029 50219837 41843226 55984395 1505408 1148106 40337818 54836289 0 0 0 0 0 0 0 0 0 0 0 0 0 0 41843226 55984395 X 0 0 0 0 0 0 0 0 41843226 55984395 0 X false true X true false X X X false false false CYSTIC FIBROSIS FOUNDATION 131930701 07 true true true 169699768 1 169699768 1665274 611478 1053796 1053796 INTERCOMPANY RECEIVABLE 50219837 50219837 true North America Grantmaking NONE 930649 Europe (Including Iceland and Greenland) Grantmaking none 871282 East Asia and the Pacific Grantmaking none 754963 Middle East and North Africa Grantmaking none 226011 2782905 2782905 North America DRUG DISCOVERY 262660 CHECK North America FUNCT'L GENO 72706 CHECK North America DRUG DISCOVERY 216000 CHECK North America CLINICAL RESEARCH 379283 CHECK Europe (Including Iceland and Greenland) CLINICAL RESEARCH 60000 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH 114785 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 146363 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 356652 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 193482 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH 754963 WIRE Middle East and North Africa DRUG DISCOVERY 55332 WIRE Middle East and North Africa DRUG DISCOVERY 170679 WIRE 11 false false false false false false Schedule F, Part I, Line 2 THE ORGANIZATION HAS PROCEDURES IN PLACE TO MONITOR THE SCIENTIFIC PROGRESS AND FINANCIAL ASPECTS OF GRANTS AWARDED TO ENTITIES OUTSIDE OF THE UNITED STATES. THE ORGANIZATION FOLLOWS THE U.S. DEPARTMENT OF TREASURY ANTI-TERRORIST FINANCING VOLUNTARY BEST PRACTICES GUIDELINES FOR CHARITIES. IN COMPLIANCE WITH THE BEST PRACTICES, THE ORGANIZATION COLLECTS AND REVIEWS INFORMATION ABOUT THE PROSPECTIVE GRANTEES AND CONDUCTS A VETTING PROCESS TO ENSURE THEY ARE NOT SUSPECTED OF ACTIVITIES RELATED TO TERRORISM. ONCE A GRANT IS APPROVED, A WRITTEN AGREEMENT IS SIGNED BY BOTH THE ORGANIZATION AND THE GRANTEE. FUNDING IS INCREMENTAL AND SPONSORED INSTITUTIONS ARE REQUIRED TO SUBMIT ANNUAL REPORTS OF EXPENDITURES AS WELL AS SCIENTIFIC PROGRESS REPORTS. SCIENTIFIC REPORTS ARE REVIEWED BY THE ORGANIZATION'S SCIENTIFIC STAFF TO DETERMINE PROGRESS. THE FINAL GRANT PAYMENT IS CONTINGENT UPON RECEIPT AND APPROVAL OF THE REPORT OF EXPENDITURES. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. INTERNAL AUDITORS CONDUCT AUDITS ON SAMPLES OF GRANT EXPENDITURE REPORTS BY EXAMINING SUPPORTING RECORDS FROM THE SPONSORED INSTITUTIONS. THE GRANTS IN THE MIDDLE EAST/NORTH AFRICA REGION WERE MADE TO BAR-ILAN UNIVERSITY and hebrew university of jerusalem, UNIVERSITies IN ISRAEL. true Ann and Robert H Lurie Children's Hospital of Chi 2300 Childrens Plaza Box 43 Chicago IL 60614 363357006 501c(3) 267733 Clinical Res. Cntr Arizona Board of Regents University of Arizona Sponsored Projects Services 888 N Euclid Room 510 Tucson AZ 85722 742652689 IRC 115 138999 Clinical Res. Cntr Arizona Board of Regents University of Arizona Sponsored Projects Services 888 N Euclid Room 510 Tucson AZ 85722 742652689 IRC 115 129193 CLINICAL RESEARCH STUDY Atlantic Health System 100 Madison Avenue Morristown NJ 07962 521958352 501c(3) 141966 Clinical Res. Cntr Baylor College of Medicine PO Box 1 Houston TX 77212 741613878 501c(3) 304501 Clinical Res. Cntr Beth Israel Medical Center Office of Grants Contracts New York NY 10038 135564934 501c(3) 164246 Clinical Res. Cntr Beth Israel Medical Center Office of Grants Contracts 160 Water Street 24th Floor New York NY 10038 135564934 501c(3) 149354 CLINICAL RESEARCH STUDY Board of Regents of the University of Wisconsin Sy Research and Sponsored Programs 160 Water Street 24th Floor Madison WI 537151218 396006492 501c(3) 145293 Clinical Res. Cntr Board of Regents of the University of Wisconsin Sy 750 University Avenue 21 N Park Street Suite 6401 Madison WI 53706 396006492 501c(3) 150756 CLINICAL RESEARCH STUDY Board of Trustees of the Leland Stanford Junior Un Stanford University Stanford CA 943056215 941156365 501c(3) 108000 DRUG DISCOVERY AWARD Board of Trustees of the Leland Stanford Junior Un Stanford University 651 Serra Street Suite 220 Stanford CA 943056215 941156365 501c(3) 210329 Clinical Res. Cntr Board of Trustees of the Leland Stanford Junior Un Stanford University Stanford CA 943056215 941156365 501c(3) 114206 CLINICAL RESEARCH STUDY Boston Children's Hospital 300 Longwood Avenue 651 Serra Street Suite 220 Boston MA 02115 042774441 501c(3) 19872 CLINICAL RESEARCH STUDY Case Western Reserve University 10900 Euclid Avenue Cleveland OH 441067015 341018992 501c(3) 411480 Clinical Res. Cntr Case Western Reserve University 10900 Euclid Avenue Cleveland OH 441067015 341018992 501c(3) 107980 CLINICAL RESEARCH STUDY Central Florida Pulmonary Group 326 North Mills Avenue Orlando FL 32803 591760017 501c(3) 91276 Clinical Res. Cntr Children's & Women's Physicians of Westchester LL Pediatrics Department Valhalla NY 10595 133940462 501c(3) 147257 Clinical Res. Cntr Children's Health Care 2525 Chicago Avenue South Munger Pavilion Room 123 Minneapolis MN 554041844 411754276 501c(3) 130247 Clinical Res. Cntr Children's Hospital Corporation 300 Longwood Avenue Boston MA 02115 042774441 501c(3) 359934 Clinical Res. Cntr Children's Hospital Medical Center Cincinnati Childrens Hospital Med Cincinnati OH 45229 310833936 501c(3) 23136 ACADEMIC ADVISORY AWARD Children's Hospital Medical Center Cincinnati Childrens Hospital Med 3333 Burnet Avenue Cincinnati OH 45229 310833936 501c(3) 229667 Clinical Res. Cntr Children's Hospital Medical Center of Akron 1 Perkins Square 3333 Burnet Avenue Akron OH 44308 340714357 501c(3) 167141 Clinical Res. Cntr Children's Hospital Los Angeles 4650 Sunset Blvd Los Angeles CA 90027 951690977 501c(3) 153884 Clinical Res. Cntr Children's Medical Center One Childrens Plaza Dayton OH 45404 310672132 501c(3) 136591 Clinical Res. Cntr Connecticut Children's Medical Center 282 Washington Street Hartford CT 06106 060646755 501c(3) 124035 Clinical Res. Cntr Cook Children's Medical Center 801 Seventh Avenue Ft Worth TX 76104 752051646 501c(3) 152617 Clinical Res. Cntr Cystic Fibrosis Foundation Headquarters 6931 Arlington Road Suite 200 Bethesda MD 20814 131930701 501c(3) 169699768 GENERAL SUPPORT Emory University 1784 N Decatur Road Atlanta GA 30322 580566256 501c(3) 276403 CLINICAL RESEARCH CENTER Emory University 1784 N Decatur Road Suite 510 Atlanta GA 30322 580566256 501c(3) 577263 CLINICAL RESEARCH STUDY Fletcher Allen Health Care 111 Colchester Avenue Suite 510 Burlington VT 05401 030219309 501c(3) 76901 Clinical Res. Cntr Kaiser Foundation Research Institute 1800 Harrison Street Oakland CA 94612 941105628 501c(3) 128693 Clinical Res. Cntr Maine Medical Center 22 Bramhall Street 16th Floor Portland ME 041023175 010238552 501c(3) 172729 Clinical Res. Cntr Medical University of South Carolina PO Box 997 Charleston SC 29402 576000722 501c(3) 249664 Clinical Res. Cntr Medical University of South Carolina PO Box 997 Charleston SC 29402 576000722 501c(3) 144735 CLINICAL RESEARCH STUDY Memorial Children's Hospital 2801 Atlantic Avenue Long Beach CA 90806 953527031 501c(3) 153306 Clinical Res. Cntr Monmouth Medical Center Foundation 300 Second Avenue ATTN Childrens Administration Long Branch NJ 07740 222456079 501c(3) 124365 Clinical Res. Cntr National Jewish Medical and Research Center 1400 Jackson Street Denver CO 80206 742044647 501c(3) 31314 Clinical Res. Cntr National Jewish Medical and Research Center 1400 Jackson Street Denver CO 80206 742044647 501c(3) 338641 CLINICAL RESEARCH STUDY Nemours Children's Clinic - Jacksonville 807 Nira Street Jacksonville FL 32207 590634433 501c(3) 395887 Clinical Res. Cntr Oregon Health & Science University Sponsored Projects Administration O Portland OR 97239 237083114 501c(3) 368757 DRUG DISCOVERY AWARD Pennsylvania State University College of Medicine 0690 SW Bancroft Street Hershey PA 17033 246000376 IRC 115 174636 Clinical Res. Cntr Philadelphia Health & Education Corp (Drexel Univ 3201 Arch Street Office of Research Affairs H138 Philadelphia PA 19104 232979433 501c(3) 145524 Clinical Res. Cntr Providence Alaska Medical Center 4045 Lake Otis Pkwy 209 Suite 420 Anchorage AK 99508 920016429 501c(3) 117238 Clinical Res. Cntr Rainbow Babies and Children's Hospital 11100 Euclid Avenue Cleveland OH 44106 341018992 501c(3) 23675 ACADEMIC ADVISORY AWARD Regents of the University of Colorado at Denver Grants and Contracts Mail Stop F42 RBC Room 3001 Aurora CO 80045 846000555 501c(3) 20621 ACADEMIC ADVISORY AWARD Regents of the University of Colorado at Denver Grants and Contracts Mail Stop F42 Anschutz Medical Campus Bldg 500 Aurora CO 80045 846000555 501c(3) 410035 Clinical Res. Cntr Regents of the University of Colorado at Denver Grants and Contracts Mail Stop F42 Anschutz Medical Campus Bldg 500 Aurora CO 80045 846000555 501c(3) 65409 CLINICAL RESEARCH Research Foundation of SUNY on behalf of Upstate M PO Box 9 Anschutz Medical Campus Bldg 500 Albany NY 122010009 141368361 501c(3) 319823 Clinical Res. Cntr Rosalind Franklin University of Medicine and Scien Green Bay Road North Chicago IL 60064 362181973 501c(3) 831101 DRUG DISCOVERY AWARD Sanford Children's Specialty Clinic 1600 W 22 Street Sioux Falls SD 57105 460447693 501c(3) 115862 Clinical Res. Cntr Seattle Children's Hospital 4800 Sand Point Way NE Seattle WA 98105 910564748 501c(3) 3926912 Clinical Res. Cntr Seattle Children's Hospital 4800 Sand Point Way NE Seattle WA 98105 910564748 501c(3) 5027754 CLINICAL RESEARCH Seattle Children's Hospital 4800 Sand Point Way NE Seattle WA 98105 910564748 501c(3) 1272310 CLINICAL RESEARCH STUDY Seton Healthcare 4900 Mueller Blvd Austin TX 78723 741109643 501c(3) 131806 Clinical Res. Cntr Spectrum Health Foundation 100 Michigan Street NE MC004 DCMC Administration 3rd Floor Grand Rapids MI 49503 382752328 501c(3) 168908 Clinical Res. Cntr St Louis University 3500 Lindell Blvd St Louis MO 63103 430654872 501c(3) 136399 Clinical Res. Cntr St Luke's Regional Medical Center 100 East Idaho Boise ID 83712 820161600 501c(3) 150313 Clinical Res. Cntr Texas Tech University Health Sciences Center 3601 4th Street Stop 6540 Suite 200 Lubbock TX 79430 752668014 IRC 115 219644 DRUG DISCOVERY AWARD The Children's Hospital of Philadelphia 34th and Civic Center Boulevard Philadelphia PA 19104 231352166 501c(3) 252532 Clinical Res. Cntr The Children's Hospital of Philadelphia 34th and Civic Center Boulevard Philadelphia PA 19104 231352166 501c(3) 295987 CLINICAL RESEARCH STUDY The Children's Mercy Hospital 2401 Gillham Road Kansas City MO 61408 440605373 501c(3) 185991 Clinical Res. Cntr The Feinstein Institute for Medical Research 350 Community Drive Manhasset NY 11030 112673595 501c(3) 244760 Clinical Res. Cntr The General Hospital Corporation (Massachusetts Ge PO Box 414876 Boston MA 022414876 042697983 501c(3) 162676 Clinical Res. Cntr The General Hospital Corporation (Massachusetts Ge Mass General Research Finance Boston MA 02114 042697983 501c(3) 163500 CLINICAL RESEARCH STUDY The Hitchcock Foundation One Medical Center Drive PO Box 414876 Lebanon NH 03756 020222139 501c(3) 171899 Clinical Res. Cntr The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 210203 DRUG DISCOVERY AWARD The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 399404 Clinical Res. Cntr The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 2103730 CLINICAL RESEARCH STUDY The Medical College of Wisconsin 8701 Watertown Plank Road Milwaukee WI 53226 390806261 501c(3) 180901 Clinical Res. Cntr The Rector and Visitors of the University of Virgi Office of Sponsored Programs Charlottesville VA 229044195 546001796 501c(3) 129862 Clinical Res. Cntr The Regents of the University of California San D 9500 Gilman Drive 0934 PO Box 400195 La Jolla CA 920930984 956006144 501c(3) 108000 DRUG DISCOVERY AWARD The Regents of the University of California San D 9500 Gilman Drive 0934 La Jolla CA 920930984 956006144 501c(3) 166244 Clinical Res. Cntr The Regents of The University of Michigan 3003 South State Street Ann Arbor MI 481091274 386006309 501c(3) 218733 Clinical Res. Cntr The Regents of The University of Michigan 3003 South State Street Room 1044 Ann Arbor MI 481091274 386006309 501c(3) 459442 CLINICAL RESEARCH STUDY The Regents of the University of Minnesota Sponsored Projects Administration Room 1044 Minneapolis MN 554552070 416007513 501c(3) 30510 ACADEMIC ADVISORY AWARD The Regents of the University of Minnesota Sponsored Projects Administration 200 Oak Street SE Suite 450 Minneapolis MN 554552070 416007513 501c(3) 273386 Clinical Res. Cntr The Research Institute at Nationwide Children's Ho 700 Childrens Drive 200 Oak Street SE Suite 450 Columbus OH 43205 316056230 501c(3) 37594 DRUG DISCOVERY AWARD The Research Institute at Nationwide Children's Ho 700 Childrens Drive Columbus OH 43205 316056230 501c(3) 299996 Clinical Res. Cntr The Scripps Research Institute 10666 North Torrey Pines Road La Jolla CA 92037 330435954 501c(3) 84000 DRUG DISCOVERY AWARD The Toledo Hospital 2142 N Cove Blvd Toledo OH 43606 344428256 501c(3) 136941 Clinical Res. Cntr The Trustees of Columbia University in the City of PO Box 29789 New York NY 100879789 135598093 501c(3) 36039 ACADEMIC ADVISORY AWARD The Trustees of Columbia University in the City of PO Box 29789 General Post Office New York NY 100879789 135598093 501c(3) 205400 DRUG DISCOVERY AWARD The Trustees of Columbia University in the City of PO Box 29789 General Post Office New York NY 100879789 135598093 501c(3) 194938 Clinical Res. Cntr The University of Alabama at Birmingham 1530 3rd Avenue S THT422 General Post Office Birmingham AL 352940006 636005396 501c(3) 113518 ACADEMIC ADVISORY AWARD The University of Alabama at Birmingham 1530 3rd Avenue S THT422 Birmingham AL 352940006 636005396 501c(3) 1077637 DRUG DISCOVERY AWARD The University of Alabama at Birmingham 1530 3rd Avenue S THT422 Birmingham AL 352940006 636005396 501c(3) 776786 Clinical Res. Cntr The University of Alabama at Birmingham 1530 3rd Avenue S THT422 Birmingham AL 352940006 636005396 501c(3) 28204 CLINICAL RESEARCH The University of Alabama at Birmingham 1530 3rd Avenue S THT422 Birmingham AL 352940006 636005396 501c(3) 238433 CLINICAL RESEARCH STUDY The University of Chicago University Research Administration Chicago IL 60637 362177139 501c(3) 25521 ACADEMIC ADVISORY AWARD The University of Iowa Office of Vice President for Resear 970 E 58th Street Iowa City IA 52242 426004813 501c(3) 701179 DRUG DISCOVERY AWARD The University of Iowa Office of Vice President for Resear Division of Sponsored Programs Iowa City IA 52242 426004813 501c(3) 172582 Clinical Res. Cntr The University of North Carolina at Chapel Hill 300 Bynum Hall Division of Sponsored Programs Chapel Hill NC 275994100 566001393 501c(3) 1135682 DRUG DISCOVERY AWARD The University of North Carolina at Chapel Hill 300 Bynum Hall CB 4100 Chapel Hill NC 275994100 566001393 501c(3) 366750 Clinical Res. Cntr The University of North Carolina at Chapel Hill 300 Bynum Hall CB 4100 Chapel Hill NC 275994100 566001393 501c(3) 353872 CLINICAL RESEARCH The University of North Carolina at Chapel Hill 300 Bynum Hall CB 4100 Chapel Hill NC 275994100 566001393 501c(3) 107983 CLINICAL RESEARCH STUDY The University of Utah 201 S Presidents Circle CB 4100 Salt Lake City UT 84112 876000525 501c(3) 232562 Clinical Res. Cntr The University of Utah 201 S Presidents Circle Room 406 Salt Lake City UT 84112 876000525 501c(3) 458269 CLINICAL RESEARCH STUDY The University of Vermont and State Agricultural C Grant and Contract Administrative S Room 406 Burlington VT 05405 030179440 501c(3) 84531 Clinical Res. Cntr Trustee of Indiana University Financial Management Services 223 Waterman Bldg Indianapolis IN 462666057 356001673 501c(3) 341287 Clinical Res. Cntr Trustees of Dartmouth College Dartmouth Medical School PO Box 66057 Hanover NH 037551404 020222111 501c(3) 91000 CLINICAL RESEARCH STUDY Trustees of Indiana University Financial Management Services Dept of Microbiology and Immunolog Indianapolis IN 462666057 356001673 501c(3) 62562 CLINICAL RESEARCH STUDY University at Buffalo Pediatric Associates 239 Bryant Street PO Box 66057 Buffalo NY 14222 161238821 501c(3) 93900 ACADEMIC ADVISORY AWARD University of Arkansas for Medical Sciences 4301 West Markham Street 2nd Floor Little Rock AR 72205 716046242 501c(3) 161990 Clinical Res. Cntr University of Colorado Health Sciences Center 4200 E 9th Avenue Mail Slot 555 Denver CO 80262 846000555 501c(3) 107965 CLINICAL RESEARCH STUDY University of Florida Shands Childrens Hospital Gainesville FL 32610 596002052 IRC 115 126106 Clinical Res. Cntr University of Kansas Medical Center Research Insti 3901 Rainbow Boulevard MSN 1039 1600 SW Archer Road Suite D2-15 Kansas City KS 661032937 481108830 501c(3) 117369 Clinical Res. Cntr University of Kentucky Research Foundation 337 Peterson Lexington KY 405060005 616033693 501c(3) 156093 Clinical Res. Cntr University of Massachusetts Medical School 55 Lake Avenue North Worcester MA 01655 043167352 IRC 115 61873 Clinical Res. Cntr University of Miami PO Box 025405 Miami FL 331025405 590624458 501c(3) 141491 Clinical Res. Cntr University of Nebraska Medical Center 985100 Nebraska Medical Center Omaha NE 681985190 470491233 501c(3) 174495 Clinical Res. Cntr University of Oklahoma Health Sciences Center PO Box 26901 Oklahoma City OK 73190 736017987 IRC 115 159737 Clinical Res. Cntr University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 543899 DRUG DISCOVERY AWARD University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 316235 Clinical Res. Cntr University of Rochester Box 649 Rochester NY 14642 160743209 501c(3) 141013 Clinical Res. Cntr University of Washington Office of Sponsored Programs 601 Elmwood Avenue Seattle WA 981056692 916001537 IRC 115 34206 ACADEMIC ADVISORY AWARD University of Washington Office of Sponsored Programs 4333 Brooklyn Avenue NE Seattle WA 981056692 916001537 IRC 115 31748 DRUG DISCOVERY AWARD University of Washington Office of Sponsored Programs 4333 Brooklyn Avenue NE Seattle WA 981056692 916001537 IRC 115 87627 Clinical Res. Cntr University of Washington Office of Sponsored Programs 4333 Brooklyn Avenue NE Seattle WA 981056692 916001537 IRC 115 47846 CLINICAL RESEARCH STUDY UT Southwestern Medical Center at Dallas 5323 Harry Hines Boulevard 4333 Brooklyn Avenue NE Dallas TX 753909105 756002868 IRC 115 87330 DRUG DISCOVERY AWARD UT Southwestern Medical Center at Dallas 5323 Harry Hines Boulevard Dallas TX 753909105 756002868 IRC 115 191642 Clinical Res. Cntr Vanderbilt University PO Box 30195 Nashville TN 372410195 620476822 501c(3) 179638 Clinical Res. Cntr Virginia Commonwealth University Box 2506 - VCU Station Richmond VA 232842506 546001758 501c(3) 120801 Clinical Res. Cntr Virginia Commonwealth University Box 2506 - VCU Station Richmond VA 232842506 546001758 501c(3) 37800 CLINICAL RESEARCH STUDY Washington University 660 S Euclid Avenue St Louis MO 63110 430653611 501c(3) 263144 Clinical Res. Cntr Washington University Campus Box 1034 St Louis MO 631121408 430653611 501c(3) 12903 CLINICAL RESEARCH STUDY Wayne State University Grants Contracts Office III 700 Rosedale Avenue Detroit MI 48201 383028425 501c(3) 162044 Clinical Res. Cntr West Virginia University Research Corporation WVU Research and Sponsored Programs Morgantown WV 265066001 550665758 501C(3) 130397 Clinical Res. Cntr ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVENUE MAIL CODE 88 ALBANY NY 12208 141338310 501C(3) 154667 CLINICAL RES. CNTR ALL CHILDREN'S HOSPITAL DEPT 9010 PO BOX 31020 ST PETERSBURG FL 33731 590683252 501C(3) 171501 CLINICAL RES. CNTR 85 PART I, LINE 2 THE ORGANIZATION HAS PROCEDURES IN PLACE TO MONITOR THE SCIENTIFIC PROGRESS AND FINANCIAL ASPECTS OF GRANT FUNDS AWARDED TO ENTITIES INSIDE OF THE US. SPONSORED INSTITUTIONS ARE REQUIRED TO SUBMIT ANNUAL REPORTS OF EXPENDITURES AS WELL AS SCIENTIFIC PROGRESS REPORTS. SCIENTIFIC REPORTS ARE REVIEWED BY THE ORGANIZATION'S SCIENTIFIC STAFF TO ENSURE ACCEPTABLE PROGRESS HAS BEEN ATTAINED. THE FINAL GRANT PAYMENT IS CONTINGENT UPON RECEIPT AND APPROVAL OF THE REPORT OF EXPENDITURES. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. THE ORGANIZATION'S INTERNAL AUDITORS AUDIT A SAMPLE OF GRANT EXPENDITURE REPORTS BY EXAMINING SUPPORTING RECORDS FROM THE SPONSORED INSTITUTIONS. X X X X X X false true false false false false false true false Robert J Beall PhD President & CEO 190871 380301 165543 336101 8150 20911 71686 171595 0 18506 436250 927414 95519 193934 Preston W Campbell MD Exec VP of Medical Affairs 129788 254125 110254 223848 154197 318935 49994 127555 0 25365 444233 949828 170280 345168 C Richard Mattingly Exec VP, COO AND SECRETARY 0 387406 0 341899 0 23165 0 203248 0 17506 0 973224 0 215658 Vera H Twigg EXEC VP and CFO 0 292024 0 174583 0 20244 0 66034 0 25315 0 578200 0 90322 BRUCE MARSHALL MD SR. VP OF CLINICAL AFFAIRS 312200 0 63561 0 3564 0 31052 0 500 0 410877 0 0 0 THEODORE J TORPHY PHD HEAD OF RESEARCH STRATEGY 215600 0 0 0 0 0 0 0 0 0 215600 0 0 0 MARTIN MENSE PRINCIPAL SCIENTIST DRUG DISC 154409 0 27830 0 3234 0 18037 0 24883 0 228393 0 0 0 Hermann Bihler PHD Senior Scientist 135869 0 10270 0 414 0 12989 0 0 0 159542 0 0 0 PART I, LINE 4B and Line 7 Part I, Line 4b: Certain persons listed in Form 990, Part VII, Section A participate in a nonqualified deferred compensation plan, under which interests are forfeited by the participant if the participant voluntarily terminates employment prior to the designated vesting date. Further information about the nonqualified deferred compensation plan in which those persons participate is provided in the additional information for Schedule J, Part II, below. Part I, Line 7: Several individuals listed in Form 990, Part VII, Section A, line 1a, (who are identified in Part II, below) participated in an Incentive Compensation Plan, from which non-fixed payments not described in lines 5 and 6 were paid. The Plan is sponsored by CFF, a related organization. The individuals participate by virtue of being officers of CFF. However, if an individual also is an officer of CFFT and receives compensation from CFFT, a portion of the individual's award is paid by CFFT. The Incentive Compensation Plan pays non-fixed payments subject to, and based on, the achievement of annual performance objectives established in advance by the Compensation Committee. In addition, the Incentive Compensation Plan pays non-fixed payments that relate to a three-year performance period, subject to, and based on, the achievement of long-term performance objectives established in advance by the Compensation Committee. Any financial performance objectives established under the Incentive Compensation Plan do not include royalty-related revenues (such as royalty streams, lump-sum royalty payments and sales proceeds of royalty rights) related to CF drugs. PART II Cystic Fibrosis Foundation Therapeutics, Inc. (A) Name: R. Beall, Ph.D.; (B)(i) Base Compensation: base salary - $183,281, 401(k) bonus - $7,590; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $63,900, long-term incentive plan payment, of which $95,519 was previously reported (6) - $101,643; (B)(iii) Other Reportable Compensation: health insurance benefit - $1,649, automobile allowance - $2,376, other benefits - $4,125 (C) Deferred Compensation: long-term incentive plan benefit (6) - $39,346, SERP (4) - $32,340; (D) Nontaxable Benefits: $0 Cystic Fibrosis Foundation - Headquarters. EIN 13-1930701. (A) Name: R. Beall, Ph.D.; (B)(i) Base Compensation: base salary - $364,891, 401(k) bonus - $15,410; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $129,736, long-term incentive plan payment, of which $193,934 was previously reported (6) - $206,365; (B)(iii) Other Reportable Compensation: health insurance benefit - $3,349, automobile allowance - $4,824, other benefits including taxable general organization group term life insurance premium - $12,738; (C) Deferred Compensation: retirement benefit (2) - $26,052, long-term incentive plan benefit (6) - $79,883, SERP (4) - $65,660; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $11,282, employee contribution to flexible spending account benefit - $2,500, employee contribution to general organization health plan benefit - $4,724 Cystic Fibrosis Foundation Therapeutics, Inc. EIN 91-2059167. (A) Name: P. Campbell, M.D.; (B)(i) Base Compensation: base salary - $129,788; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $35,431, long-term incentive plan payment, of which $70,315 was previously reported (6) - $74,823; (B)(iii) Other Reportable Compensation: Section 457(b) Plan (5) - $5,775, SERP account that became vested, of which $99,695 was previously reported (3) - $148,422; (C) Deferred Compensation: long-term incentive plan benefit (6) - $29,501, SERP (4) - $20,493; (D) Nontaxable Benefits: $0 Cystic Fibrosis Foundation - Headquarters. EIN 13-1930701. (A) Name: P. Campbell, M.D.; (B)(i) Base Compensation: base salary - $254,125; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $71,937, long-term incentive plan payment, of which $142,760 was previously reported (6) - $151,911; (B)(iii) Other Reportable Compensation: other benefits including taxable general organization group term life insurance premium - $5,867, Section 457(b) Plan (5) - $11,725, SERP account that became vested, of which $202,408 was previously reported (3) - $301,343; (C) Deferred Compensation: retirement benefit (2) - $26,052, long-term incentive plan benefit (6) - $59,896, SERP (4) - $41,607; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $15,982, employee contribution to flexible spending account benefit - $2,500, employee contribution to general organization health plan benefit - $6,883 Cystic Fibrosis Foundation - Headquarters. EIN 13-1930701. Name: (A) R. Mattingly; (B)(i) Base Compensation: base salary - $387,406; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $112,417, long-term incentive plan payment, of which $215,658 was previously reported (6) - $229,482; (B)(iii) Other Reportable Compensation: Section 457(b) Plan (5) - $17,500; other benefits including taxable general organization group term life insurance premium - $5,665; (C) Deferred Compensation: retirement benefit (2) - $26,052, long-term incentive plan benefit (6) - $88,833, SERP (4) - $88,363; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $11,282, employee contribution to flexible spending account benefit - $1,500, employee contribution to general organization health plan benefit - $4,724 Cystic Fibrosis Foundation - Headquarters. EIN 13-1930701. (A) Name: V. Twigg; (B)(i) Base Compensation: base salary - $292,024; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $78,471, long-term incentive plan payment, of which $90,322 was previously reported (6) - $96,112; (B)(iii) Other Reportable Compensation: taxable general organization group term life insurance premium - $2,744, Section 457(b) Plan (5) - $17,500; (C) Deferred Compensation: retirement benefit (2) - $26,052, long-term incentive plan benefit (6) - $35,067, SERP (4) - $4,915; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $15,982, employee contribution to flexible spending account benefit - $2,500, employee contribution to general organization health plan benefit - $6,833 (1) This is an award subject to, and based on, achievement of annual performance standards established in advance by the Compensation Committee of the CFF Board. (2) This is the employer contribution made under the Cystic Fibrosis Foundation 401(k) Plan for the 2013 Plan Year. (3) This amount is the aggregate of employer contributions to the SERP that were earned by the participant and accrued from 2007 through 2012, and which became vested (but have not yet been paid, in accordance with the governing SERP documents) during the reporting year. As required, SERP contributions have been reported as "Contributions to Employee Benefit Plans" and "Deferred Compensation" on prior years' Form 990s and therefore (as required by the instructions) are double-reported here. (4) The SERP is sponsored by CFF, a related organization. The executive participates by virtue of being an officer of CFF. However, both CFFT and CFF make contributions on the executive's behalf if the executive receives compensation from CFFT (as an officer of CFFT) and from CFF (as an officer of CFF). A. This is an unvested employer contribution to the SERP. B. SERP interests are forfeited by the participant if the participant voluntarily terminates employment prior to attaining the vesting date designated by CFF (which is either a specified age or date, depending on the participant). C. SERP interests are held in a trust subject to the claims of CFF's bankruptcy creditors. In the event of a CFF bankruptcy, participants would become general unsecured creditors of CFF. D. The SERP is a nonqualified deferred compensation plan. This means that participants do not receive the tax benefits available to participants in tax qualified retirement plans. For example, under current law, interests under SERPs are reportable as taxable compensation when they become vested, even if those amounts are not yet payable to the participant (and even if those amounts are never paid to the participant). E. The SERP's design was reviewed and opined upon as reasonable by an independent compensation consultant. SERP contribution amounts were determined by an independent actuary. F. CFF retains the right to amend or terminate the SERP at any time. (5) The 457(b) Plan is sponsored by CFF, a related organization. The executive participates by virtue of being an officer of CFF. However, both CFFT and CFF make contributions on the executive's behalf if the executive receives compensation from CFFT (as an officer of CFFT) and from CFF (as an officer of CFF). A. This is a vested contribution to the 457(b) Plan for the reporting period. B. In the event of a CFF bankruptcy, participants are general unsecured creditors of CFF. C. Distributions from the 457(b) Plan may not be rolled-over to an IRA or qualified plan (but may only be rolled-over to another 457(b) plan). D. The 457(b) Plan's design was reviewed and opined upon as reasonable by an independent compensation consultant. An independent actuary developed the contribution formula pursuant to which 457(b) contribution amounts are determined. Contributions to the 457(b) Plan are subject to annual IRS limits (currently $17,500). E. CFF retains the right to amend or terminate the 457(b) Plan at any time. (6) This Plan provides for awards that relate to a three-year performance period, subject to, and based on, achievement of performance objectives established in advance by the Compensation Committee of the Board of Trustees of CFF, a related entity. The individuals participate by virtue of being officers of CFF. However, if an individual also is an officer of CFFT and receives compensation from CFFT, a portion of the individual's award is paid by CFFT. Any financial performance objectives established under the Incentive Compensation Plan do not include royalty-related revenues (such as royalty streams, lump-sum royalty payments and sales proceeds of royalty rights) related to CF drugs. Each year, a new three-year performance period begins. As required by the Form 990 instructions, the amounts reported on this Form 990 reflect an estimate of the portion of each award that the executive accrued under the Plan for performance in 2013 (i.e., with respect to the 2011-2013, 2012-2014 and the 2013-2015 performance Part VI, Section A, Line 7a (Page 6 Core Form) Certain of the Organization's board members are designated by the Board of Trustees of the Cystic Fibrosis Foundation. Part VI, Section B, Line 11b (Page 6 Core Form) The Organization's Board of Directors receives a draft of the Form 990 prior to its being filed, with sufficient time for review and comment allowed. The Organization's ERISA attorneys review the executive compensation sections of the Form 990 to ensure completeness and accuracy. The Audit Committee also reviews the Form 990 as part of its chartered responsibilities. In all cases the cystic fibrosis foundation therapeutics board of directors received a complete copy of the final form 990 before it is filed. Part VI, Section B, Line 12c (Page 6 Core Form) A conflict of interest disclosure statement is completed annually by each Board member and officer. As required within the bylaws, any potential conflicts of interest must be reported to the Board as they arise. When any matter is deemed a potential conflict of interest and requires action by the Board of DIRECTORS, the interested director or officer is required to retire from the room in which the Board is meeting, may not participate in the final deliberation of the matter, and may not vote on the matter. The Organization enforced the policy during 2013 and had no conflicts of interest as defined by the policy. Part VI, Section B, Line 15a and 15b (Page 6 Core Form) The total compensation of executives at the Organization is specifically designed to attract and retain the highest qualified executive and medical talent to fulfill the critically important mission of curing cystic fibrosis and providing all people with the disease the opportunity to lead full, productive lives. Cystic Fibrosis Foundation Therapeutics, Inc. shares officers with Cystic Fibrosis Foundation, a related organization. The independent Compensation Committee of the CF Foundation's Board of Trustees follows the process described in the IRS intermediate sanctions rules when determining compensation for executives of the Organization. Specifically, the Committee: (1) Is composed entirely of non-employee volunteer directors who have no familial, business or significant personal relationships with the Organization or its executives. (2) Assesses the short-term and long-term contribution and performance of each executive in meeting very definitive and quantifiable objectives focused on the Organization's mission success. (3) Engages an independent compensation consulting firm to compile appropriate comparability data (including compensation market information for peers with whom the Organization competes for executive talent) for Committee reliance. The Committee meets with representatives of the consulting firm to review this data in detail. (4) Reviews all elements of each executive's total compensation, including but not limited to base salary, bonuses, perquisites, fringe benefits, and incentive and deferred compensation arrangements. Upon the executive's hire, and at each point in time thereafter at which a new or revised compensation arrangement is under consideration with respect to the executive, the Committee meets with its independent compensation consulting firm before the arrangement is implemented to evaluate the reasonableness of the arrangement by comparing both the arrangement itself and the executive's entire compensation package to compensation packages paid by similarly situated organizations for functionally comparable positions. (5) Documents, concurrently with its determination, the basis for its determination in the minutes of its meeting. These minutes are reviewed, revised if necessary and approved at the following meeting of the Committee. (6) Obtains a written legal opinion concerning the Committee's compliance with the IRS intermediate sanctions rules. The process described above was used to establish compensation for the following positions: President & CEO Executive Vice President, COO and Secretary Executive Vice President for Medical Affairs Executive Vice President & CFO The process was last undertaken in 2012 (and again in 2014). Part VI, Section C, Line 19 (Page 6 Core Form) The Form 1023 for the Organization was available on its website, CFF.org, and the Organization's website provides a direct link to its Form 990 on Guidestar.org. CFFT's governing documents (Bylaws and Articles of Incorporation) are available upon request by contacting the Organization in writing or by phone. Information on how to obtain the governing documents is available on the website, www.cff.org/Research/CFFT. The Board and Officer Conflict of Interest Policy and the audited financial statements are available on the website, www.cff.org/Research/CFFT. FORM 990, PART VII, SECTION A NAME AND TITLE CHRISTY SHAFFER, PH.D, CHAIR AVG HRS WORKED 5 HRS AVG HRS WORKED - RELATED 6 HRS POSITION INDIVIDUAL DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE JASON M. ARYEH, DIRECTOR AVG HRS WORKED 3 HRS POSITION INDIVIDUAL DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE STEVEN SHAK, M.D., DIRECTOR AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 6 HRS POSITION INDIVIDUAL DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE CATHERINE C. MCLOUD, DIRECTOR AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 11 HRS POSITION INDIVIDUAL DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE JONATHAN COHN, M.D., DIRECTOR AVG HRS WORKED 3 HRS POSITION INDIVIDUAL DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE D. PAUL FLESSNER, DIRECTOR AVG HRS WORKED 3 HRS POSITION INDIVIDUAL DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE ROBERT J. BEALL, PH.D, PRES/CEO AVG HRS WORKED 20 HRS AVG HRS WORKED - RELATED 40 HRS POSITION INDIVIDUAL DIRECTOR & OFFICER REPORTABLE COMP FROM THE ORG 364,564 REPORTABLE COMP FROM RELATED ORG 737,313 EST. AMT OF OTHER COMP FROM THE ORG 261,787 NAME AND TITLE PRESTON W. CAMPBELL, M.D., EXEC VP OF MEDICAL AFFAIRS AVG HRS WORKED 20 HRS AVG HRS WORKED - RELATED 40 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 394,239 REPORTABLE COMP FROM RELATED ORG 796,908 EST. AMT OF OTHER COMP FROM THE ORG 202,914 NAME AND TITLE C. RICHARD MATTINGLY EXEC VP, COO AND SECRETARY AVG HRS WORKED 5 HRS AVG HRS WORKED - RELATED 55 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG 752,470 EST. AMT OF OTHER COMP FROM THE ORG 220,754 NAME AND TITLE VERA H. TWIGG, EXEC VP & CFO AVG HRS WORKED 5 HRS AVG HRS WORKED - RELATED 55 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG 486,851 EST. AMT OF OTHER COMP FROM THE ORG 91,349 NAME AND TITLE BRUCE MARSHALL, MD, SR. VP OF CLINICAL AFFAIRS AVG HRS WORKED 50 HRS POSITION HIGHEST COMPENSATED EMPLOYEE REPORTABLE COMP FROM THE ORG 379,325 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 31,552 NAME AND TITLE THEODORE TORPHY, PH.D. HEAD OF RESEARCH STRATEGY AVG HRS WORKED 50 HRS POSITION HIGHEST COMPENSATED EMPLOYEE REPORTABLE COMP FROM THE ORG 215,600 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE MARTIN MENSE, PH.D, PRINCIPAL SCIENTIST FOR DRUG DISCOVERY AVG HRS WORKED 50 HRS POSITION HIGHEST COMPENSATED EMPLOYEE REPORTABLE COMP FROM THE ORG 182,563 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 42,921 NAME AND TITLE HERMANN BIHLER, PH.D., SENIOR SCIENTIST AVG HRS WORKED 50 HRS POSITION HIGHEST COMPENSATED EMPLOYEE REPORTABLE COMP FROM THE ORG 146,553 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 12,989 NAME AND TITLE CYNTHIA GEORGE, MDS, FNP, BC SR. DIR OF PaTIENT ENGAGEMENT AVG HRS WORKED 50 HRS POSITION HIGHEST COMPENSATED EMPLOYEE REPORTABLE COMP FROM THE ORG 127,454 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 13,478 TOTAL REPORTABLE COMP FROM THE ORG 1,810,298 TOTAL REPORTABLE COMP FROM RELATED ORG 2,773,542 TOTAL EST. AMT OF OTHER COMP FROM THE ORG 877,744 FORM 990, PART VIII, LINE 5 CFFT retains legal and beneficial rights to intellectual property developed under certain scientific grants and drug discovery agreements. Royalties received under these agreements are recorded as revenue when they become due. In addition, at times CFFT may sell all or a portion of its royalty rights under certain of these agreements in exchange for a lump sum. Amounts received under these agreements are recorded as royalty revenue when rights are forfeited and proceeds are receivable. In May 2013, CFFT entered into an agreement to sell a portion of its future royalty revenue under one such drug discovery agreement. Royalty revenue incudes $247,900,946 relating to this transaction. FORM 990, PART I, LINE 1 THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION, A NONPROFIT DONOR SUPPORTED ORGANIZATION, IS TO CURE CYSTIC FIBROSIS AND TO PROVIDE ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES BY FUNDING RESEARCH AND DRUG DEVELOPMENT AND PROMOTING INDIVIDUALIZED TREATMENT. CYSTIC FIBROSIS FOUNDATION-HEADQUARTERS 6931 ARLINGTON RD bethesda MD 20814 131930701 research DE 501(c)(3) 7 na false CYSTIC FIBROSIS FOUNDATION - GROUP 6931 ARLINGTON RD BETHESDA MD 20814 136161105 EDUCATION DE 501(c)(3) 7 CFF-HQ false false true false false false false false false false false false false false true true false false false false Cystic fibrosis foundation - headquarters B 169699768 FMV Cystic fibrosis foundation - headquarters N 520100 cost Cystic fibrosis foundation - headquarters O 2365047 cost