2016-08-04T15:22:28-05:00 2015-12-31 KPMG LLP 1676 International Drive McLean VA 22102 990 2015-01-01 912059167 CYSTIC FIBROSIS FOUNDATION THERAPEUTICS INC % PRESTON W CAMPBELL MD CYST 3019514422 6931 ARLINGTON ROAD Suite 200 BETHESDA MD 20814 PRESTON W CAMPBELL MD PRESIDENT & CEO 3019514422 2016-08-02 true JOCELYNE C MILLER P00634378 7032868000 2015 2016-12-15 16:53:06Z PRESTON W CAMPBELL MD 6931 ARLINGTON ROAD STE 200 BETHESDA MD 20814 124281169 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. 8 7 39 0 0 0 0 86230120 3274846429 120217 25502 0 9066 37930832 3274880997 124281169 3231024082 62018896 0 0 6801253 9002193 0 0 0 37055662 53260080 3274880997 124281169 0 63052423 85794978 63052423 85794978 0 0 X THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION THERAPEUTICS 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 MORE THAN 30,000 PEOPLE IN THE U.S. CURRENTLY, THERE IS NO CURE. false false 56638070 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 CFFTS 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. 66442579 62018896 120217 CFFT SUPPORTS A NATIONAL CLINICAL RESEARCH NETWORK OF NEARLY 80 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 2015 CONSISTED OF COSTS TO SUPPORT SCIENTIFIC STUDY AND INVESTIGATIONS. 507 GRANTS WERE AWARDED IN 2015. 123080649 true true false false false false false false false false true false false true false true false true false false true true false false false false false true true true false false false false false false false false false false false false false true false false false true 97 0 true 39 true false false false false false false false false false false X 8 7 false false false false false true false true true false false true true true true true true true true false MI X X PRESTON W CAMPBELL MD 3019514422 6931 ARLINGTON RD STE 200 BETHESDA MD 20814 X JASON M ARYEH DIRECTOR 3.0 0.0 X 0 0 0 JONATHAN COHN MD DIRECTOR 3.0 0.0 X 0 0 0 CATHERINE C MCLOUD DIRECTOR 3.0 11.0 X 0 0 0 D PAUL FLESSNER DIRECTOR 3.0 0.0 X 0 0 0 STEVEN SHAK MD DIRECTOR 3.0 6.0 X 0 0 0 ERIC R OLSON PHD DIRECTOR 3.0 0.0 X 0 0 0 THEODORE J TORPHY PHD CHAIR 5.0 6.0 X 13200 0 0 PRESTON CAMPBELL MD PRESIDENT & CEO (AS OF 10/1) 20.0 40.0 X X 245571 496970 212541 ROBERT BEALL PHD PRESIDENT & CEO (UNTIL 9/30) 20.0 40.0 X X 779230 1575208 108896 C RICHARD MATTINGLY EXECUTIVE VP & COO 5.0 55.0 X 0 2718373 68546 VERA H TWIGG EXECUTIVE VP, CFO & SECRETARY 5.0 55.0 X 0 499672 107968 BRUCE MARSHALL MD SENIOR VP OF CLINICAL AFFAIRS 35.0 15.0 X 314135 129754 32060 MICHAEL P BOYLE MD SENIOR VP OF THERAPEUTICS DEV. 50.0 0.0 X 268355 0 14595 CHRIS PENLAND PHD VICE PRESIDENT OF RESEARCH 23.0 27.0 X 122428 139512 53305 WILLIAM SKACH MD SENIOR VP OF RESEARCH AFFAIRS 38.0 12.0 X 233504 74887 48493 DAVID MCLOUGHLIN SR. VP OF OPERATIONS 35.0 15.0 X 108101 253478 60349 2084524 5887854 706753 18 false true false PFIZER INC 200 CAMBRIDGEPARK DRIVE CAMBRIDGE MA 02140 CONTRACTED RESEARCH 13724392 GENZYME CORPORATION FIVE MOUNTAIN ROAD FRAMINGHAM MA 01701 CONTRACTED RESEARCH 5856680 SHIRE ORPHAN RARE DISEASE GMBH ZAHLERWEG 10 ZUG 0 SZ CONTRACTED RESEARCH 4987500 ALGIPHARMA AS INDUSTRIVAN 33 SANOVINA 0 NO CONTRACTED RESEARCH 4800000 ANTHERA PHARMACEUTICALS 25801 INDUSTRIAL BLVD HAYWARD CA 94545 CONTRACTED RESEARCH 2638627 26 86230120 0 86230120 CLINICAL STUDY 541900 120217 120217 120217 0 0 31822208 31822208 0 0 0 0 0 0 0 REFUNDED OR CANCELLED GRANT 900099 5908624 5908624 MISCELLANEOUS INCOME 900099 200000 200000 6108624 124281169 38051049 0 0 55715621 55715621 7000 7000 6296275 6296275 0 1109667 1012768 96899 0 6740789 6152165 588624 268819 245345 23474 423586 386597 36989 459332 413720 45612 0 604718 604718 3990 3990 0 0 0 276438 223242 53196 0 1091426 975603 115823 882625 782729 99896 0 1051598 995202 56396 274593 257848 16745 0 439323 416520 22803 0 0 466409 450668 15741 324275 324275 CONTRACTED RESEARCH 46960119 46960119 MEDICAL ADVISORY FEES 497387 497387 MISCELLANEOUS 387179 362847 24332 124281169 123080649 1200520 0 0 0 2026003 -3060639 0 0 261700 28485525 0 0 0 0 0 0 0 0 404036 577130 2534959 1137407 934327 1397552 0 0 0 0 0 0 0 0 59426357 58395410 63052423 85794978 1129462 2971343 61922961 82823635 0 0 0 0 0 0 0 0 0 0 0 0 0 0 63052423 85794978 X 0 0 0 0 0 0 0 0 63052423 85794978 0 X false true X true false X X 118 CYSTIC FIBROSIS FOUNDATION 131930701 7 true 0 0 ALBANY MEDICAL COLLEGE 141338310 2 false 174236 0 ALL CHILDREN'S HOSPITAL 590683252 3 false 242316 0 ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 363357006 7 false 422279 0 ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA 742652689 6 false 674659 0 ATLANTIC HEALTH SYSTEM 521958352 3 false 326345 0 BAYLOR COLLEGE OF MEDICINE 741613878 2 false 446113 0 BETH ISRAEL MEDICAL CENTER 135564934 3 false 268845 0 BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SY 396006492 6 false 718674 0 BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UN 941156365 2 false 555836 0 CASE WESTERN RESERVE UNIVERSITY 341018992 2 false 1807928 0 CEDARS-SINAI MEDICAL CENTER 951644600 3 false 162000 0 CHILDREN'S HEALTH CARE 411754276 3 false 174340 0 CHILDREN'S HOSPITAL CORPORATION (BOSTON CHILDREN'S 042774441 3 false 961223 0 CHILDREN'S HOSPITAL MEDICAL CENTER 310833936 3 false 1758844 0 CHILDREN'S HOSPITAL MEDICAL CENTER OF AKRON 340714357 3 false 89662 0 CHILDREN'S HOSPITAL LOS ANGELES 951690977 3 false 148296 0 CHILDREN'S MEDICAL CENTER 310672132 3 false 158148 0 CONNECTICUT CHILDREN'S MEDICAL CENTER 060646755 3 false 67669 0 COOK CHILDREN'S MEDICAL CENTER 752051646 3 false 270377 0 DANA-FARBER CANCER INSTITUTE 042263040 7 false 162000 0 PHILADELPHIA HEALTH & EDUCATION CORPORATION 232979433 2 false 93186 0 EMORY UNIVERSITY 580566256 2 false 936561 0 GEORGIA HEALTH SCIENCES UNIVERSITY RESEARCH INSTIT 581418202 7 false 116053 0 GEORGIA INSTITUTE OF TECHNOLOGY 586002023 6 false 264611 0 KAISER FOUNDATION RESEARCH INSTITUTE 941105628 3 false 217527 0 LOUISIANA STATE UNIVERSITY HEALTH SCIENCES CENTER 726087770 6 false 162000 0 MAINE MEDICAL CENTER 010238552 3 false 140292 0 MEDICAL UNIVERSITY OF SOUTH CAROLINA 576000722 6 false 239349 0 MEMORIAL CHILDREN'S HOSPITAL 953527031 3 false 300657 0 MEMORIAL SLOAN KETTERING CANCER CENTER 131924236 3 false 54097 0 MONMOUTH MEDICAL CENTER FOUNDATION 222456079 7 false 72203 0 NATIONAL JEWISH MEDICAL AND RESEARCH CENTER 742044647 3 false 610128 0 NEMOURS CHILDREN'S CLINIC ORLANDO 590634433 3 false 127526 0 NORTHWESTERN UNIVERSITY 362167817 2 false 157181 0 OREGON HEALTH & SCIENCE UNIVERSITY 237083114 5 false 738950 0 OSF SAINT FRANCIS MEDICAL CENTER 370662569 3 false 83238 0 PENNSYLVANIA STATE UNIVERSITY 246000376 6 false 111433 0 PROVIDENCE ALASKA MEDICAL CENTER 920016429 3 false 70040 0 REGENTS OF THE UNIVERSITY OF COLORADO AT DENVER 846000555 2 false 1570331 0 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false 2749060 0 THE MEDICAL COLLEGE OF WISCONSIN 390806261 2 false 232145 0 THE RECTOR AND VISITORS OF THE UNIVERSITY OF VIRGI 546001796 2 false 166460 0 THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN D 956006144 2 false 492690 0 THE REGENTS OF THE UNIVERSITY OF MICHIGAN 386006309 2 false 887567 0 THE REGENTS OF THE UNIVERSITY OF MINNESOTA 416007513 6 false 430425 0 THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO 316056230 4 false 532249 0 THE SCRIPPS RESEARCH INSTITUTE 330435954 4 false 193350 0 THE TOLEDO HOSPITAL 344428256 3 false 126510 0 THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF 135598093 2 false 615484 0 THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 636005396 2 false 1876851 0 THE UNIVERSITY OF CHICAGO 362177139 2 false 26061 0 THE UNIVERSITY OF IOWA 426004813 6 false 2458340 0 THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 566001393 2 false 2063278 0 THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT H 741761309 6 false 380000 0 THE UNIVERSITY OF UTAH 876000525 2 false 766526 0 THE UNIVERSITY OF VERMONT AND STATE AGRICULTURAL C 030179440 2 false 297424 0 TRUSTEES OF BOSTON UNIVERSITY 042103547 2 false 81000 0 TRUSTEES OF INDIANA UNIVERSITY 356001673 2 false 382742 0 TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 231352685 2 false 55102 0 UNIVERSITY AT BUFFALO PEDIATRIC ASSOCIATES 161238821 9 false 12636 0 UNIVERSITY OF ALABAMA IN HUNTSVILLE 630520830 2 false 145126 0 UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 716046242 6 false 98960 0 UNIVERSITY OF CINCINNATI PHYSICIANS COMPANY 311435820 9 false 153539 0 UNIVERSITY OF COLORADO HEALTH SCIENCES CENTER 846000555 2 false 856012 0 UNIVERSITY OF FLORIDA 596002052 6 false 243845 0 UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL 043167352 6 false 182322 0 UNIVERSITY OF MIAMI 590624458 2 false 216505 0 UNIVERSITY OF NEBRASKA MEDICAL CENTER 470491233 2 false 210962 0 UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER 736017987 6 false 173593 0 UNIVERSITY OF PITTSBURGH 250965591 2 false 1356500 0 UNIVERSITY OF ROCHESTER 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HEBREW UNIVERSITY OF JERUSALEM 999999999 2 false 162000 0 INSTITUTE OF CHILD HEALTH UNIVERSITY COLLEGE LONDON 999999999 2 false 147828 0 MCGILL UNIVERSITY 999999999 2 false 262660 0 QIMR BERGHOFER MEDICAL RESEARCH INSTITUTE 999999999 4 false 107824 0 ROYAL COLLEGE OF SURGEONS IN IRELAND 999999999 2 false 162000 0 SIMON FRASER UNIVERSITY 999999999 2 false 50000 0 ST MICHAEL'S HOSPITAL UNIVERSITY OF TORONTO 999999999 2 false 91319 0 THE HOSPITAL FOR SICK CHILDREN 999999999 3 false 790714 0 THE UNIVERSITY OF CAMBRIDGE 999999999 2 false 162000 0 THE UNIVERSITY OF WESTERN AUSTRALIA 999999999 2 false 2107172 0 UNIVERSITY COLLEGE CORK 999999999 2 false 51247 0 UNIVERSITY HOSPITAL HEIDELBERG 999999999 2 false 79065 0 UNIVERSITY OF BRITISH COLUMBIA 999999999 2 false 88938 0 UNIVERSITY OF MANCHESTER 999999999 2 false 247156 0 UTRECHT UNIVERSITY 999999999 2 false 347690 0 119 62006083 0 false true false true false true false false false false false false false false false false false false true true SUPPORTED ORGANIZATIONS SCHEDULE A, PART I, LINE 11G All support provided by Cystic Fibrosis Foundation Therapeutics and reported in column (v) is for the benefit of Cystic Fibrosis Foundation, its supported organization. The support provided to the organizations listed in column (i) funds research critical to furthering the mission of the Cystic Fibrosis Foundation. SCHEDULE A, PART IV, LINE 1 CYSTIC FIBROSIS FOUNDATION IS THE ONLY SUPPORTED ORGANIZATION LISTED BY NAME IN THE GOVERNING DOCUMENTS OF CFFT. ALL OTHER SUPPORTED ORGANIZATIONS ARE DESIGNATED BY THE PURPOSE FOR WHICH THEY APPLY FOR SUPPORT FROM CFFT. ALL SUPPORT IS GIVEN FOR THE PURPOSE OF FUNDING RESEARCH INTO DRUG DEVELOPMENT FOR THE TREATMENT AND CURE OF CYSTIC FIBROSIS. CONTINUED SUPPORT TO ALL ORGANIZATIONS NOT NAMED IN THE GOVERNING DOCUMENTS IS CONTINGENT UPON THE ORGANIZATION DEMONSTRATING SCIENTIFIC PROGRESS. SCHEDULE A, PART IV, LINE 2 SUPPORTED ORGANIZATIONS WHO HAVE NOT RECEIVED AN IRS DETERMINATION LETTER ARE EITHER STATE GOVERNMENTAL UNITS DESCRIBED IN SECTION 170(B)(1)(a)(V) AND TAX EXEMPT UNDER IRC 115 OR ORGANIZATIONS OUTSIDE OF THE U.S. CFFT RECEIVES FROM ALL AWARD RECIPIENTS A W-8 OR W-9 AND A LETTER CERTIFYING THEIR STATUS AS A PUBLICALLY SUPPORTED ORGANIZATION EQUIVALENT TO 509(a)(1) OR 509(a)(2) EITHER WITHIN THE U.S. OR THEIR COUNTRY. SCHEDULE A, PART IV, LINE 4B CYSTIC FIBROSIS FOUNDATION, A SUPPORTED ORGANIZATION, HAD ULTIMATE CONTROL AND DISCRECTION IN DECIDING TO MAKE GRANTS TO FOREIGN SUPPORTED ORGANIZATIONS. SCHEDULE A, PART IV, LINE 4C CFFT RECEIVES FROM ALL FOREIGN SUPPORTED ORGANIZATIONS A W-8 AND A LETTER CERTIFYING THEIR STATUS AS A PUBLICALLY SUPPORTED ORGANIZATION EQUIVALENT TO 509(a)(1) OR 509(a)(2) WITHIN THEIR COUNTRY. FOR THE FULL MONITORING PROCESS OF AWARDS MADE TO FOREIGN SUPPORTED ORGANIZATIONS SEE SCHEDULE F, PART V. SCHEDULE A, PART IV, SECTION B, LINE 2 SEE NARRATIVE FOR SCHEDULE A, PART I, LINE 11G ABOVE. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4914 4914 0 2530045 132493 1397552 1397552 INTERCOMPANY RECEIVABLE 58395410 58395410 0 0 X SCHEDULE D, PART X FIN 48 FOOTNOTE THE FOUNDATION, CFFT, AND CFPAF ARE NOT-FOR-PROFIT VOLUNTARY HEALTH ORGANIZATIONS EXEMPT FROM FEDERAL INCOME TAXES UNDER 501(C)(3) OF THE INTERNAL REVENUE CODE (THE CODE) AND FROM STATE TAXES AND HAVE BEEN CLASSIFIED AS ORGANIZATIONS THAT ARE NOT PRIVATE FOUNDATIONS UNDER SECTION 509(A) OF THE CODE. THE FOUNDATION DOES NOT HAVE ANY UNRELATED BUSINESS INCOME TAX LIABILITY AS OF DECEMBER 31, 2015 AND 2014. CONTRIBUTIONS TO THE FOUNDATION QUALIFY FOR THE CHARITABLE CONTRIBUTIONS DEDUCTION TO THE EXTENT PROVIDED BY SECTION 170 OF THE CODE. CFPAF IS ORGANIZED AS A SINGLE MEMBER LIMITED LIABILITY COMPANY THAT IS A DISREGARDED ENTITY FOR FEDERAL TAX PURPOSES. THE SOLE MEMBER OF CFPAF IS THE FOUNDATION. THE FOUNDATION IS NOT AWARE OF ANY TAX POSITION TAKEN THAT REQUIRES DISCLOSURE BASED ON CURRENT FACTS AND CIRCUMSTANCES. THE FOUNDATION ANNUALLY REVIEWS ITS TAX POSITIONS AND HAS DETERMINED THAT THERE ARE NO MATERIAL UNCERTAIN TAX POSITIONS THAT REQUIRE RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS. true North America Grantmaking NONE 1283631 Europe (Including Iceland and Greenland) Grantmaking NONE 2660474 East Asia and the Pacific Grantmaking NONE 2107172 Middle East and North Africa Grantmaking NONE 244998 Europe (Including Iceland and Greenland) Program Services CONTRACTED RESEARCH 11775000 18071275 18071275 North America CLINICAL RESEARCH 91319 CHECK North America CLINICAL RESEARCH 107509 CHECK North America CLINICAL RESEARCH 25914 CHECK North America DRUG DISCOVERY 262660 CHECK North America DRUG DISCOVERY 657291 CHECK North America DRUG DISCOVERY 50000 CHECK North America DRUG DISCOVERY 88938 CHECK Europe (Including Iceland and Greenland) DRUG DISCOVERY 277130 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 347690 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 195806 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 162000 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 79065 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 116640 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 51247 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 147828 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 51350 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 162000 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH 779190 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH 60000 WIRE Europe (Including Iceland and Greenland) DRUG DISCOVERY 107824 WIRE Europe (Including Iceland and Greenland) CLINICAL RESEARCH 122704 WIRE East Asia and the Pacific DRUG DISCOVERY 162000 WIRE East Asia and the Pacific CLINICAL RESEARCH 1321044 WIRE East Asia and the Pacific CLINICAL RESEARCH 624128 WIRE Middle East and North Africa DRUG DISCOVERY 162000 WIRE Middle East and North Africa DRUG DISCOVERY 82998 WIRE 20 false false false false false false PROCEDURES FOR MONITORING GRANT FUNDS OUTSIDE OF THE U.S. 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. THE CF FOUNDATION'S 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 ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVE ALBANY NY 12208 141338310 501C(3) 174236 CLINICAL RESEARCH CENTER ALL CHILDREN'S HOSPITAL DEPT 9010 ST PETERSBURG FL 33731 590683252 501C(3) 242316 CLINICAL RESEARCH CENTER ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 2300 CHILDRENS PLAZA CHICAGO IL 60614 363357006 501C(3) 39279 CLINICAL RESEARCH ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 2300 CHILDRENS PLAZA CHICAGO IL 60614 363357006 501C(3) 203469 CLINICAL RESEARCH CENTER ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 2300 CHILDRENS PLAZA CHICAGO IL 60614 363357006 501C(3) 17531 CLINICAL RESEARCH STUDY ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 2300 CHILDRENS PLAZA CHICAGO IL 60614 363357006 501C(3) 162000 THERAPEUTICS DISCOVERY RESEARCH ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA 888 N EUCLID TUCSON AZ 85722 742652689 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OF WISCONSIN SY 21 N PARK ST MADISON WI 537151218 396006492 IRC 115 447873 CLINICAL RESEARCH STUDY BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UN 651 SERRA STREET STANFORD CA 943056215 941156365 501C(3) 27000 ADHERENCE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UN 651 SERRA STREET STANFORD CA 943056215 941156365 501C(3) 312836 CLINICAL RESEARCH CENTER BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UN 651 SERRA STREET STANFORD CA 943056215 941156365 501C(3) 216000 THERAPEUTICS DISCOVERY RESEARCH CASE WESTERN RESERVE UNIVERSITY 10900 EUCLID AVENUE CLEVELAND OH 441067015 341018992 501C(3) 534453 CLINICAL RESEARCH CENTER CASE WESTERN RESERVE UNIVERSITY 10900 EUCLID AVENUE CLEVELAND OH 441067037 341018992 501C(3) 1273475 THERAPEUTICS DISCOVERY RESEARCH CEDARS-SINAI MEDICAL CENTER 8700 BEVERLY BOULEVARD LOS ANGELES CA 90048 951644600 501C(3) 162000 THERAPEUTICS DISCOVERY RESEARCH CHILDREN'S HEALTH CARE 2525 CHICAGO AVENUE SOUTH MINNEAPOLIS MN 554041844 411754276 501C(3) 6316 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501C(3) 61280 CLINICAL RESEARCH CENTER WASHINGTON UNIVERSITY 660 S EUCLID AVENUE ST LOUIS MO 63110 430653611 501C(3) 354752 CLINICAL RESEARCH CENTER WAYNE STATE UNIVERSITY RESEARCH AND SPONSORED PROGRAMS DETROIT MI 48201 383028425 501C(3) 185704 CLINICAL RESEARCH CENTER WAYNE STATE UNIVERSITY RESEARCH AND SPONSORED PROGRAMS DETROIT MI 48201 383028425 501C(3) 150000 THERAPEUTICS DISCOVERY RESEARCH WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY 1300 YORK AVENUE NEW YORK NY 10021 150532082 501C(3) 162000 THERAPEUTICS DISCOVERY RESEARCH YALE UNIVERSITY 47 COLLEGE STREET NEW HAVEN CT 065208047 060646973 501C(3) 67977 CLINICAL RESEARCH CENTER YALE UNIVERSITY 47 COLLEGE STREET NEW HAVEN CT 065208047 060646973 501C(3) 108000 CLINICAL RESEARCH STUDY YALE UNIVERSITY 47 COLLEGE STREET NEW HAVEN CT 065208047 060646973 501C(3) 165845 THERAPEUTICS DISCOVERY RESEARCH 97 FELLOWSHIP 1 7000 PROCEDURES FOR MONITORING GRANT FUNDS INSIDE OF THE U.S. 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 U.S. 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 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 CF FOUNDATION'S INTERNAL AUDITORS CONDUCT AUDITS ON SAMPLES OF GRANT EXPENDITURE REPORTS BY EXAMINING SUPPORTING RECORDS FROM THE SPONSORED INSTITUTION. SCHEDULE I, PART III FELLOWSHIPS ARE AWARDED TO INVESTIGATORS CONDUCTING RESEARCH RELATED TO GRANTS REPORTED IN PART II. SEE SUPPLEMENTAL INFORMATION FOR PART I, LINE 2 FOR PROCEDURES USED TO MONITOR THESE GRANTS. PRIOR TO MAKING FELLOWSHIP PAYMENTS, SUPPORTING DOCUMENTATION OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. X X X X X X true true false false false false false true false false PRESTON CAMPBELL MD PRESIDENT & CEO (AS OF 10/1) 144690 284125 93316 189461 7565 23384 51623 131869 0 29049 297194 657888 30544 62015 ROBERT BEALL PHD PRESIDENT & CEO (UNTIL 9/30) 206690 412228 135956 276031 436584 886949 20043 67754 0 21099 799273 1664061 106173 215564 C RICHARD MATTINGLY EXECUTIVE VP & COO 0 316273 0 273763 0 2128337 0 61263 0 7283 0 2786919 0 682855 VERA H TWIGG EXECUTIVE VP, CFO & SECRETARY 0 309865 0 167491 0 22316 0 78919 0 29049 0 607640 0 39236 BRUCE MARSHALL MD SENIOR VP OF CLINICAL AFFAIRS 233509 116754 77062 13000 3564 0 32060 0 0 0 346195 129754 0 0 MICHAEL P BOYLE MD SENIOR VP OF THERAPEUTICS DEV. 238947 0 28500 0 908 0 0 0 14595 0 282950 0 0 0 CHRIS PENLAND PHD VICE PRESIDENT OF RESEARCH 110144 110144 12284 28664 0 704 0 27060 0 26245 122428 192817 0 0 WILLIAM SKACH MD SENIOR VP OF RESEARCH AFFAIRS 200449 66816 29498 8071 3557 0 20704 0 27789 0 281997 74887 0 0 DAVID MCLOUGHLIN SR. VP OF OPERATIONS 86994 202987 21107 49249 0 1242 0 32060 0 28289 108101 313827 0 0 PART I, LINE 4A - SEVERANCE PAYMENT MR. MATTINGLY RECEIVED SEVERANCE PAY FROM CYSTIC FIBROSIS FOUNDATION HEADQUARTERS ("CFF"), A RELATED ORGANIZATION, UPON HIS RETIREMENT AS EXECUTIVE VICE PRESIDENT AND COO OF CFF. HE HAD EXTRAORDINARY SUCCESSES ACHIEVED OVER HIS 37-YEAR TENURE. THE SEVERANCE WAS REVIEWED AND OPINED ON AS REASONABLE FROM A COMPETITIVE MARKET PERSPECTIVE BY THE CFF BOARDS INDEPENDENT COMPENSATION CONSULTANTS AND REVIEWED IN DETAIL AND APPROVED (IN THE MANNER SPECIFIED IN IRS REGULATIONS) BY THE CFF BOARD'S INDEPENDENT COMPENSATION COMMITTEE. ADDITIONAL INFORMATION, INCLUDING THE DOLLAR AMOUNT OF THE AWARD, IS PROVIDED IN THE ADDITIONAL INFORMATION FOR SCHEDULE J, PART II, BELOW. PART I, LINE 4B - SUPPLEMENTAL NONQUALIFIED RETIREMENT PLAN CERTAIN PERSONS LISTED IN FORM 990, PART VII, SECTION A PARTICIPATE IN A NONQUALIFIED DEFERRED COMPENSATION PLAN SPONSORED BY CYSTIC FIBROSIS FOUNDATION HEADQUARTERS ("CFF"), A RELATED ORGANIZATION. THE EXECUTIVES PARTICIPATE BY VIRTUE OF BEING AN OFFICER OF CFF. HOWEVER, BOTH CFFT AND CFF MAKE CONTRIBUTIONS ON THE EXECUTIVES BEHALF IF THE EXECUTIVE RECEIVES COMPENSATION FROM CFFT (AS AN OFFICER OF CFFT) AND FROM CFF (AS AN OFFICER OF CFF). NONQUALIFIED DEFERRED COMPENSATION PLAN 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, INCLUDING THE AMOUNT OF ANY PAYMENT MADE BY THE PLAN DURING THE REPORTING YEAR, 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 INDIVIDUALS 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 PROGRAM-RELATED REVENUES (SUCH AS ROYALTY STREAMS, LUMP-SUM PAYMENTS, OTHER PROGRAM-RELATED INCOME, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES) RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. PART II: CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $144,690; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $29,772, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $30,544, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $33,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS - $1,625; SECTION 457(B) PLAN (5) - $5,940; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $31,040, SERP (4) - $20,583; (D) NONTAXABLE BENEFITS: $0; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $30,544. CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. EIN 13-1930701. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $284,125; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $60,446, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $62,015, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $67,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $11,324, SECTION 457(B) PLAN (5) - $12,060; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $63,020, SERP (4) - $41,789; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $19,409, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,550, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $7,090; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $62,015. CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $198,770, 401(K) BONUS $7,920; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $48,263, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $41,493, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $46,200; (B)(III) OTHER REPORTABLE COMPENSATION: HEALTH INSURANCE BENEFIT - $1,606, AUTOMOBILE ALLOWANCE - $2,376, OTHER BENEFITS - $4,125, ADDITIONAL AWARD (7) - $330,000; VESTED SERP ACCOUNT (8) - $98,477; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $20,043; (D) NONTAXABLE BENEFITS: $0; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $106,173; CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. EIN 13-1930701. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $396,148, 401(K) BONUS $16,080; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $97,988, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $84,244, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $93,800; (B)(III) OTHER REPORTABLE COMPENSATION: HEALTH INSURANCE BENEFIT - $3,260, AUTOMOBILE ALLOWANCE - $4,824, OTHER BENEFITS - $8,925, ADDITIONAL AWARD (7) - $670,000, VESTED SERP ACCOUNT (8) $199,939; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $40,694 ; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $13,683, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,550, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,866; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $215,564. CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. EIN 13-1930701. (A) NAME: R. MATTINGLY; (B)(I) BASE COMPENSATION: BASE SALARY - $316,273; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $80,081, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $93,682, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $100,000; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN (5) - $18,000; OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $4,384; SEVERANCE AWARD (10) - $1,142,587, VESTED SERP ACCOUNT (11) $963,366; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $34,203; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $5,650, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $658, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $975; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $682,855. CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. EIN 13-1930701. (A) NAME: V. TWIGG; (B)(I) BASE COMPENSATION: BASE SALARY - $309,865; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $58,255, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $39,236, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $70,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $4,316, SECTION 457(B) PLAN (5) - $18,000; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $48,153, SERP (4) - $3,706; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $19,409, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,550, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $7,090; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $39,236 (1) THIS IS AN AWARD SUBJECT TO, AND BASED ON, ACHIEVEMENT OF ANNUAL PERFORMANCE STANDARDS ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD OF TRUSTEES OF CYSTIC FIBROSIS FOUNDATION HEADQUARTERS ("CFF"), A RELATED ORGANIZATION. THE EXECUTIVE PARTICIPATES BY VIRTUE OF BEING AN OFFICER OF CFF. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES (SUCH AS ROYALTY STREAMS, LUMP-SUM PAYMENTS, OTHER PROGRAM-RELATED INCOME, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES) RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. (2) THIS IS THE EMPLOYER CONTRIBUTION MADE UNDER THE CYSTIC FIBROSIS FOUNDATION 401(K) PLAN FOR THE 2015 PLAN YEAR. (3) THIS IS AN AWARD UNDER A PLAN SPONSORED BY CFF, A RELATED ORGANIZATION, WHICH PAYS A SPECIFIED DOLLAR AMOUNT ONLY IF AND WHEN THE FDA APPROVES CERTAIN PRE-SPECIFIED TYPES OF THERAPIES. IN THE EVENT THE EMPLOYEE TERMINATES EMPLOYMENT PRIOR TO FDA APPROVAL OF THE SPECIFIED THERAPY TYPE AND PAYMENT OF THE AWARD, THE EMPLOYEE WILL FORFEIT HIS OR HER RIGHT TO RECEIVE PAYMENT, UNLESS TERMINATION IS DUE TO RETIREMENT OR DISABILITY. THE PLAN WILL TERMINATE ON DECEMBER 31, 2018 UNLESS CFF DETERMINES TO EXTEND THE PLAN. PART II - CONTINUED (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 EXECUTIVES 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 EXECUTIVES 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 $18,000). 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 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 INDIVIDUALS AWARD IS PAID BY CFFT. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES (SUCH AS ROYALTY STREAMS, LUMP-SUM PAYMENTS, OTHER PROGRAM-RELATED INCOME, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES) RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. EACH YEAR, A NEW THREE-YEAR PERFORMANCE PERIOD BEGINS. AS REQUIRED BY THE FORM 990 INSTRUCTIONS, THE AMOUNTS REPORTED IN COLUMN (C) ON THIS FORM 990 REFLECT AN ESTIMATE OF THE PORTION OF EACH AWARD THAT THE EXECUTIVE ACCRUED UNDER THE PLAN FOR PERFORMANCE IN 2015 (I.E., WITH RESPECT TO THE 2013-2015, 2014-2016 AND THE 2015-2017 PERFORMANCE PERIODS), BUT THE AMOUNTS REPORTED IN COLUMN (C) HAVE NOT BEEN EARNED, AWARDED OR PAID UNDER THE PLAN. THE INDIVIDUAL MUST BE EMPLOYED ON 12/31/15, 12/31/16 AND 12/31/17 TO BE ELIGIBLE TO RECEIVE FULL PAYMENT OF THE AWARD FOR THE 2013-2015, 2014-2016, AND THE 2015-2017 PERFORMANCE PERIODS, RESPECTIVELY. THE AWARD RELATING TO THE 3-YEAR PERFORMANCE PERIOD ENDING 12/31/14 WAS PAID IN 2015, AND IS PROPERLY REPORTED AGAIN (AS COMPENSATION IN COLUMN (B)(II)) ON THIS FORM 990 (EVEN THOUGH AN ESTIMATE OF THE PORTION OF THIS AWARD THAT THE EXECUTIVE ACCRUED UNDER THE PLAN FOR PERFORMANCE IN 2014, 2013 AND 2012 WAS REPORTED IN COLUMN (C) OF THE FORM 990 FOR EACH OF THOSE YEARS). (7) THIS WAS AN AWARD PAID TO DR. BEALL UPON HIS RETIREMENT AS CEO OF CFF, FULFILLING THE TERMS OF HIS CONTRACT AND RECOGNIZING THE SIGNIFICANT CONTRIBUTIONS AND YEARS OF SERVICE (21-YEARS AS CEO AND 14-YEARS AS EXECUTIVE VICE PRESIDENT). THE AWARD WAS PAID BY CFFT WITH RESPECT TO HIS SERVICE AS AN OFFICER OF CFFT, AND BY CFF WITH RESPECT TO HIS SERVICE AS AN OFFICER OF CFF. THE AWARD WAS REVIEWED AND OPINED ON AS REASONABLE AND MARKET-COMPETITIVE BY THE CFF BOARD OF TRUSTEES INDEPENDENT COMPENSATION CONSULTANTS AND REVIEWED IN DETAIL AND APPROVED (IN THE MANNER SPECIFIED IN IRS REGULATIONS) BY THE CFF BOARDS INDEPENDENT COMPENSATION COMMITTEE. (8) THIS AMOUNT BECAME VESTED AND TAXABLE IN 2015 UNDER THE SERP DESCRIBED IN FOOTNOTE (4) ABOVE, UNDER WHICH DR. BEALL RECEIVED CONTRIBUTIONS FROM 2013-2015. AS REQUIRED, THE CONTRIBUTIONS TO THIS SERP THAT GENERATED THE AMOUNT REPORTED IN COLUMN B(III) OF THIS FORM 990 WERE REPORTED ON PRIOR YEARS' FORM 990S IN COLUMN (C). (9) THIS AMOUNT, ALTHOUGH ALSO INCLUDED IN COLUMN B OF THIS FORM 990, HAS ALREADY BEEN REPORTED AS COMPENSATION ON PRIOR YEARS' FORM 990S, AND THEREFORE (AS REQUIRED BY THE INSTRUCTIONS) IS DOUBLE-REPORTED HERE. (10) THIS WAS SEVERANCE PAID TO MR. MATTINGLY BY CFF UPON HIS RETIREMENT AS EXECUTIVE VICE PRESIDENT AND COO OF CFF, AFTER A 37-YEAR TENURE. THE AWARD WAS REVIEWED AND OPINED ON AS REASONABLE FROM A MARKET-COMPETITIVE STANDPOINT BY THE CFF BOARD OF TRUSTEES INDEPENDENT COMPENSATION CONSULTANTS AND REVIEWED IN DETAIL AND APPROVED (IN THE MANNER SPECIFIED IN IRS REGULATIONS) BY THE CFF BOARDS INDEPENDENT COMPENSATION COMMITTEE. (11) THIS AMOUNT BECAME VESTED AND TAXABLE IN 2015 UNDER THE SERP DESCRIBED IN FOOTNOTE (4) ABOVE, UNDER WHICH MR. MATTINGLY RECEIVED CONTRIBUTIONS FROM 2007-2015. AS REQUIRED, THE CONTRIBUTIONS TO THIS SERP THAT GENERATED THE AMOUNT REPORTED IN COLUMN B(III) OF THIS FORM 990 WERE REPORTED ON PRIOR YEARS' FORM 990S IN COLUMN (C). GOVERNING BODY APPOINTMENTS PART VI, SECTION A, LINE 7A THE MAJORITY OF THE ORGANIZATIONS BOARD MEMBERS ARE DESIGNATED BY THE BOARD OF TRUSTEES OF THE CYSTIC FIBROSIS FOUNDATION. THE OTHERS ARE EX-OFFICIO, APPOINTED TO THE BOARD BY THE BYLAWS. REVIEW OF 990 BY GOVERNING BODY PART VI, SECTION B, LINE 11B THE ORGANIZATIONS BOARD OF DIRECTORS RECEIVES A DRAFT OF THE FORM 990 PRIOR TO ITS BEING FILED, WITH SUFFICIENT TIME FOR REVIEW AND COMMENT ALLOWED. THE ORGANIZATIONS 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. CONFLICT OF INTEREST MONITORING PART VI, SECTION B, LINE 12C 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 2015 AND HAD NO CONFLICTS OF INTEREST AS DEFINED BY THE POLICY. DETERMINING COMPENSATION PART VI, SECTION B, LINE 15A AND 15B 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 EXECUTIVES 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 EXECUTIVES 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 COMMITTEES COMPLIANCE WITH THE IRS INTERMEDIATE SANCTIONS RULES. THE PROCESS DESCRIBED ABOVE WAS USED TO ESTABLISH COMPENSATION FOR THE FOLLOWING OFFICERS OF THE ORGANIZATION: PRESIDENT & CEO EXECUTIVE VICE PRESIDENT & COO EXECUTIVE VICE PRESIDENT, CFO AND SECRETARY THE PROCESS WAS LAST UNDERTAKEN IN 2014, WITH THE EXCEPTION OF THAT FOR THE CEO POSITION WHICH WAS LAST CONDUCTED IN 2015. PUBLIC INSPECTION PART VI, SECTION C 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. CFFTS 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 CONSOLIDATED FINANCIAL STATEMENTS ARE AVAILABLE ON THE WEBSITE, WWW.CFF.ORG/RESEARCH/CFFT/FINANCIALSTATEMENTS. PART VII, SECTION A THE FOLLOWING IS AN ESTIMATE OF THE AVERAGE HOURS PER WEEK DEVOTED TO RELATED ORGANIZATIONS BY THE OFFICERS: CYSTIC FIBROSIS CYSTIC FIBROSIS FOUNDATION FOUNDATION GROUP RETURN TITLE HEADQUARTERS FOR THE CHAPTERS ----- ------------- ---------------------- PRESIDENT & CEO 36 4 EXEC. VICE PRESIDENT & COO 50 5 EXEC. VICE PRESIDENT & CFO 50 5 PART VII, SECTION A REPORTABLE COMPENSATION FROM THE ORGANIZATION THIS AMOUNT WAS PAID TO DR. TORPHY WITH RESPECT TO HIS SERVICES AS AN EMPLOYEE, WHICH TERMINATED ON 12/31/14. HE WAS PAID FOR THOSE SERVICES IN ACCORDANCE WITH THE ORGANIZATION'S STANDARD PAY PRACTICES, WHICH CAUSED HIS FINAL PAYCHECKS TO BE PAID IN THE FIRST TWO PAY DATES DURING 2015. THEREFORE, THE COMPENSATION IS REPORTABLE COMPENSATION FOR 2015. DR. TORPHY RECEIVED NO COMPENSATION AS CHAIRMAN OF THE BOARD OF DIRECTORS OF THE ORGANIZATION. 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 false true false false false false false false false false false false true true false false false false