2022-11-15T09:27:47-06:00 2021-12-31 135565207 KPMG LLP 8350 BROAD STREET SUITE 900 MCLEAN VA 22102 990 2021-01-01 131930701 CYSTIC FIBROSIS FOUNDATION CYST 3019514422 4550 MONTGOMERY AVENUE 1100N BETHESDA MD 20814 IRENA BARISIC EVP & CFAO 3019514422 2022-11-14 1 IRENA BARISIC 999009999 JONATHAN LIST P01679255 7032868000 2022-11-08 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z MICHAEL P BOYLE MD 4550 MONTGOMERY AVENUE 1100N BETHESDA MD 20814 1964297033 0 X WWW.CFF.ORG X 1955 DE TO CURE CYSTIC FIBROSIS (CF) AND TO PROVIDE ALL PEOPLE WITH CF THE (CONTINUED ON SCH O) OPPORTUNITY TO LEAD LONG, FULFILLING LIVES. 17 16 788 17000 -1752749 0 73199355 86536159 1666083 1263333 681199107 306161908 44565408 23276151 800629953 417237551 187172342 178329656 0 0 103110573 107679100 179250 176400 20846911 90918826 89426030 381380991 375611186 419248962 41626365 5369999661 5691109976 271006647 274479667 5098993014 5416630309 X SEE SCHEDULE O 0 0 276420200 173388546 9089953 SEE SCHEDULE O 19555794 4941110 SEE SCHEDULE O 23518542 SEE SCHEDULE O 319494536 1 1 0 1 0 0 0 0 0 0 1 1 0 0 0 1 1 0 0 0 1 1 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 1 0 0 1 792 0 1 788 1 1 1 0 0 0 0 1 1 0 0 0 1 0 1 0 X 17 16 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 1 1 AL AR CA FL GA HI IL IN KS KY MD MA MI MN MS NH NJ NM NY OR PA RI SC TN UT VA WV WI X X IRENA BARISIC & CFF LEGAL TEAM 3019514422 4550 MONTGOMERY AVE SUITE 1100N BETHESDA MD 20814 CATHERINE C MCLOUD CHAIR 8.00 0.00 X 0 0 0 JOHN S WEINBERG EXECUTIVE VICE CHAIR 6.50 0.00 X 0 0 0 LOUIS A DEFALCO VICE CHAIR 5.00 0.00 X 0 0 0 ROBERT H NIEHAUS VICE CHAIR 5.00 0.00 X 0 0 0 ERIC R OLSON PHD VICE CHAIR 5.00 0.00 X 0 0 0 THEODORE J TORPHY PHD VICE CHAIR 5.00 0.00 X 0 0 0 DAVID A MOUNT TREASURER 3.00 0.00 X 0 0 0 RICHARD J GRAY ESQ TRUSTEE 3.00 0.00 X 0 0 0 CAROLE B GRIEGO MD TRUSTEE 3.00 0.00 X 0 0 0 SUSAN L HOOK TRUSTEE (UNTIL 5/2021) 3.00 0.00 X 0 0 0 CHAD T MOORE TRUSTEE 3.00 0.00 X 0 0 0 DOMINIC J CARUSO TRUSTEE (AS OF 5/2021) 3.00 0.00 X 0 0 0 PAUL A MOTENKO TRUSTEE (AS OF 5/2021) 3.00 0.00 X 0 0 0 TERESA L ELDER TRUSTEE 3.00 0.00 X 0 0 0 STEVEN SHAK MD TRUSTEE 3.00 0.00 X 0 0 0 PAUL W WHETSELL TRUSTEE 3.00 0.00 X 0 0 0 KC BRYAN WHITE TRUSTEE 3.00 0.00 X 0 0 0 JESSICA H BOYD MD TRUSTEE 3.00 0.00 X 0 0 0 MICHAEL P BOYLE MD PRESIDENT & CEO 40.00 0.00 X X 744103 0 447890 MARC S GINSKY COO (UNTIL 8/2021) 40.00 1.00 X 1245811 0 68450 IRENA BARISIC AS OF 62021 EVP, CFAO & ASST SEC. & ASST TRSR 40.00 1.00 X 346943 0 29835 VERA H TWIGG CFO (UNTIL 7/2021) 40.00 1.00 X 616739 0 110081 CHRIS GEGELYS CHIEF LEGAL OFFICER & SECRETARY 40.00 1.00 X 465159 0 120691 JACK MAHLER MD CHIEF INVESTMENT OFFICER 40.00 0.00 X 1401121 0 657424 BRUCE MARSHALL MD EVP & CHIEF MEDICAL OFFICER 40.00 0.00 X 578644 0 136453 WILLIAM SKACH MD EVP & CHIEF SCIENTIFIC OFFICER 40.00 0.00 X 653362 0 176897 JOHN P CLANCY MD VP, CLINICAL RESEARCH 40.00 0.00 X 485245 0 122358 EARL LEE MANAGING DIRECTOR, INVESTMENTS 40.00 0.00 X 724883 0 190323 ERIC KOEHRSEN MANAGING DIRECTOR, INVESTMENTS 40.00 0.00 X 796581 0 216856 MAUREEN FRASER SVP, FIELD MNGMT (UNTIL 5/2021) 40.00 0.00 X 485415 0 75342 GENTIANA AROVAS INVESTMENT OPERATIONS DIRECTOR 40.00 0.00 X 467489 0 117105 ANTHONY DURMOWICZ MD VP, CLINICAL DEVELOPMENT 40.00 0.00 X 485873 0 80791 PRESTON CAMPBELL MD FORMER CEO & STRATEGIC ADVISOR 40.00 0.00 X 399495 0 201352 9896863 0 2751848 282 1 1 0 PIONEERING MEDICINE (CF) LLC 55 CAMBRIDGE PARKWAY STE 800E CAMBRIDGE MA 02142 CONTRACTED RESEARCH 12000000 VERTEX PHARMACEUTICALS INC 50 NORTHERN AVE BOSTON MA 02210 CONTRACTED RESEARCH 10000000 ICAGEN INC 4222 EMPEROR BLVD SUITE 350 DURHAM NC 27703 CONTRACTED RESEARCH 3811979 MICROBION CORPORATION 1102 WEST BABCOCK STREET SUITE B BOZEMAN MT 59715 CONTRACTED RESEARCH 3395005 MATINAS BIOPHARMA INC 1545 ROUTE 206 SOUTH SUITE 302 BEDMINSTER NJ 07921 CONTRACTED RESEARCH 3176058 89 362626 45841986 40331547 4318566 86536159 SCIENTIFIC CONFERENCE 611600 1004333 990333 14000 DATA SAFETY MONITORING 541900 259000 259000 1263333 62205751 -1766749 63972500 12463153 70463 12392690 1787567438 1543611281 243956157 243956157 243956157 3443701 45841986 3443701 0 14800 4500 10300 10300 REFUNDED/CANCELLED GRA 900099 7770157 7770157 OTHER MISC. REVENUE 900099 3032541 3032541 10802698 417237551 9089953 -1752749 323364188 163803073 163803073 489212 489212 14037371 14037371 8407208 5032045 2077107 1298056 600848 359631 148447 92770 75118912 44961629 18559077 11598206 5487947 3284751 1355868 847328 12664337 7580104 3128885 1955348 5399848 3311695 1193418 894735 429465 289891 139297 277 217841 217841 682260 682260 176400 176400 2643636 2643636 4607104 3901716 521345 184043 12260 5517 2084 4659 3658046 2523092 195409 939545 11232026 7732325 2309811 1189890 6373917 4087331 1143533 1143053 174212 100699 28966 44547 1967221 1747713 72773 146735 2726418 2314268 227062 185088 725795 501925 188471 35399 CONTRACTED RESEARCH 51177870 51177870 SPIROMETERS 542770 542770 MEDICAL QUALITY IMPROVE 410501 410501 TRAINING 341973 239386 79628 22959 1502715 377761 1037081 87873 375611186 319494536 35269739 20846911 35549 9916 69522190 70751911 4506399 8629010 39442408 23159403 303834 305397 5361744 7623850 25888172 18246718 7848712 7641454 3627909660 3935176433 1573550755 1576278160 30228638 50147851 11289772 11386591 5369999661 5691109976 31173557 40322607 236465610 231895234 3367480 2261826 271006647 274479667 X 5089568156 5398556832 9424858 18073477 5098993014 5416630309 5369999661 5691109976 41626365 276010930 0 X 0 1 X 1 0 X 110650273 108058591 108894890 73199355 86536159 487339268 110650273 108058591 108894890 73199355 86536159 487339268 487339268 67686719 66681682 95519254 95019118 74598441 399505214 15116982 15369965 15976419 9386514 6491042 62340922 949185404 58184885 0.51340 0.52990 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: REIMBURSEMENT PROCEEDS - 2017 AMOUNT: $ 412,777. 2018 AMOUNT: $ 467,265. 2019 AMOUNT: $ 29,624. 2020 AMOUNT: $ 2,889,947. 2021 AMOUNT: $ 0. EMPLOYEE RETENTION CREDIT - 2020 AMOUNT: $ 2,653,151. 2021 AMOUNT: $ 3,032,541. GROSS FUNDRAISING REVENUE - 2017 AMOUNT: $ 14,552,162. 2018 AMOUNT: $ 14,774,450. 2019 AMOUNT: $ 15,811,603. 2020 AMOUNT: $ 3,754,416. 2021 AMOUNT: $ 3,443,701. GROSS GAMING REVENUE - 2017 AMOUNT: $ 152,043. 2018 AMOUNT: $ 128,250. 2019 AMOUNT: $ 135,192. 2020 AMOUNT: $ 89,000. 2021 AMOUNT: $ 14,800. PART II, LINE 12 GROSS RECEIPTS FROM RELATED ACTIVITIES THE FOUNDATION FOSTERS COLLABORATION WITHIN THE SCIENTIFIC COMMUNITY BY HOSTING A LARGE SCIENTIFIC CONFERENCE PROVIDING A FORUM FOR RESEARCHERS AND CAREGIVERS TO SHARE THEIR PRACTICES AND INVESTIGATION RESULTS WITH ONE ANOTHER. FEES FOR ATTENDANCE AT THIS CONFERENCE ARE REPORTED ON LINE 12. REIMBURSEMENTS FOR DATA SAFETY MONITORING BOARD AND PROTOCOL REVIEW COMMITTEE RELATED COSTS ARE REPORTED ON LINE 12. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 53545 1 2264 0 1 1003055 0 1 8269 1067133 0 PART II-B, LINE 1: LOBBYING ACTIVITY THE CYSTIC FIBROSIS FOUNDATION IS FOCUSED ON CURING CYSTIC FIBROSIS AND ENSURING ALL PEOPLE WITH THE DISEASE HAVE THE OPPORTUNITY TO LEAD LONG, FULFILLING LIVES. IN ADDITION TO FUNDING CYSTIC FIBROSIS RESEARCH, THE FOUNDATION ADVOCATES FOR POLICIES THAT ADVANCE BASIC, TRANSLATIONAL AND CLINICAL RESEARCH AND DEVELOPMENT OF TREATMENTS FOR RARE DISEASES LIKE CYSTIC FIBROSIS AND STRATEGIES THAT GIVE ALL PEOPLE WITH THE DISEASE ACCESS TO HIGH QUALITY, SPECIALIZED CYSTIC FIBROSIS CARE. ADVOCACY ACTIVITIES INCLUDE EMAIL COMMUNICATION ENCOURAGING GRASSROOTS ADVOCATES TO CONTACT THEIR LEGISLATORS, ANNUAL EVENTS WHERE VOLUNTEERS MEET WITH MEMBERS OF CONGRESS TO DISCUSS ISSUES CRITICAL TO THE CYSTIC FIBROSIS COMMUNITY, DEVELOPING WEB POSTS AND PUBLICATIONS TO REGULARLY UPDATE MEMBERS OF THE CYSTIC FIBROSIS COMMUNITY OF RELEVANT LEGISLATION AND ENCOURAGE INDIVIDUALS TO TAKE ACTION, AND COMMUNICATING REGULARLY WITH FEDERAL LEGISLATORS AND AGENCIES. 5525259 2324645 3200614 20362913 15922073 4440840 7641454 PVT EQTY & OTHR ILLIQUID 1020463424 F GLOBAL PUBLIC EQUITY 427949533 F ABSOLUTE RETURN 122285560 F PERPETUAL TRUSTS & OTHER 5579643 F 1576278160 X 682712678 276010931 276010931 406701747 10535804 10535804 417237551 365075382 0 365075382 10535804 10535804 375611186 PART X, LINE 2: THE FOUNDATION IS A NOT-FOR-PROFIT VOLUNTARY HEALTH ORGANIZATION EXEMPT FROM FEDERAL INCOME TAXES UNDER 501(C)(3) OF THE INTERNAL REVENUE CODE (THE CODE) AND FROM STATE TAXES AND HAS BEEN CLASSIFIED AS AN ORGANIZATION THAT IS NOT A PRIVATE FOUNDATION UNDER SECTION 509(A) OF THE CODE. THE FOUNDATION DOES NOT HAVE ANY UNRELATED BUSINESS INCOME TAX LIABILITY AS OF DECEMBER 31, 2021 AND 2020. CONTRIBUTIONS TO THE FOUNDATION QUALIFY FOR THE CHARITABLE CONTRIBUTIONS DEDUCTION TO THE EXTENT PROVIDED BY SECTION 170 OF THE CODE. 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. 1 EUROPE 0 0 GRANTMAKING NONE 6548200 NORTH AMERICA 0 0 GRANTMAKING NONE 4243804 EAST ASIA AND THE PACIFIC 0 0 GRANTMAKING NONE 2971365 MIDDLE EAST AND NORTH AFRICA 0 0 GRANTMAKING NONE 274002 CENTRAL AMERICA & CARIBBEAN 0 0 INVESTMENTS 888060000 EAST ASIA & PACIFIC 0 0 INVESTMENTS 183767000 EUROPE 0 0 INVESTMENTS 387207000 NORTH AMERICA 0 0 INVESTMENTS 68076000 MIDDLE EAST AND NORTH AFRICA 0 0 INVESTMENTS 2195000 NORTH AMERICA 0 0 PROGRAM SERVICES CONTRACTED RESEARCH 1255502 MIDDLE EAST AND NORTH AFRICA 0 0 PROGRAM SERVICES CONTRACTED RESEARCH 688716 EUROPE 0 0 PROGRAM SERVICES CONTRACTED RESEARCH 495704 EAST ASIA AND THE PACIFIC 0 0 PROGRAM SERVICES CONTRACTED RESEARCH 200000 SOUTH ASIA 0 0 PROGRAM SERVICES CONTRACTED RESEARCH 175000 0 0 0 0 0 0 1541147371 5009922 1546157293 EUROPE RESEARCH 144701 WIRE 0 NORTH AMERICA CLINICAL RESEARCH STUDY 488600 WIRE 0 NORTH AMERICA THERAPEUTICS DISCOVERY RESEARCH 64864 WIRE 0 EUROPE CLINICAL RESEARCH CENTER 443264 WIRE 0 EUROPE QUALITY IMPROVEMENT 819368 WIRE 0 EUROPE THERAPEUTICS DISCOVERY RESEARCH 199876 WIRE 0 EUROPE CLINICAL RESEARCH CENTER 1410608 WIRE 0 EUROPE PILOT STUDY 56000 WIRE 0 EUROPE PILOT STUDY 109749 WIRE 0 EUROPE RESEARCH 280000 WIRE 0 EUROPE CLINICAL RESEARCH STUDY 414719 WIRE 0 EUROPE RESEARCH 132300 WIRE 0 EUROPE RESEARCH 139948 WIRE 0 EUROPE CLINICAL RESEARCH STUDY 102810 WIRE 0 NORTH AMERICA RESEARCH 692840 WIRE 0 EUROPE PILOT STUDY 55999 WIRE 0 MIDDLE EAST AND NORTH AFRICA CLINICAL RESEARCH 52920 WIRE 0 EUROPE RESEARCH 140000 WIRE 0 EUROPE ADHERENCE 223023 WIRE 0 EUROPE THERAPEUTICS DISCOVERY RESEARCH 220018 WIRE 0 EAST ASIA AND THE PACIFIC RESEARCH 139581 WIRE 0 NORTH AMERICA CLINICAL RESEARCH 515675 WIRE 0 NORTH AMERICA CLINICAL RESEARCH STUDY 270608 WIRE 0 NORTH AMERICA RESEARCH STUDY 63350 WIRE 0 MIDDLE EAST AND NORTH AFRICA CLINICAL RESEARCH 81189 WIRE 0 MIDDLE EAST AND NORTH AFRICA RESEARCH 139893 WIRE 0 NORTH AMERICA CLINICAL RESEARCH CENTER 149365 WIRE 0 NORTH AMERICA CLINICAL RESEARCH STUDY 377654 WIRE 0 NORTH AMERICA RESEARCH 139946 WIRE 0 NORTH AMERICA THERAPEUTICS DISCOVERY RESEARCH 120500 WIRE 0 EUROPE RESEARCH 45000 WIRE 0 NORTH AMERICA PILOT STUDY 56000 WIRE 0 EUROPE CLINICAL RESEARCH 782469 WIRE 0 EUROPE RESEARCH 229729 WIRE 0 EAST ASIA AND THE PACIFIC RESEARCH 139977 WIRE 0 EAST ASIA AND THE PACIFIC PILOT STUDY 89583 WIRE 0 EAST ASIA AND THE PACIFIC CLINICAL RESEARCH 651209 WIRE 0 EAST ASIA AND THE PACIFIC CLINICAL RESEARCH STUDY 1672505 WIRE 0 EAST ASIA AND THE PACIFIC PILOT STUDY 55442 WIRE 0 NORTH AMERICA CLINICAL RESEARCH STUDY 164074 WIRE 0 EUROPE RESEARCH 119850 WIRE 0 EUROPE RESEARCH 278976 WIRE 0 NORTH AMERICA CLINICAL CARE RESEARCH 829440 WIRE 0 NORTH AMERICA CLINICAL RESEARCH STUDY 168000 WIRE 0 NORTH AMERICA RESEARCH 139888 WIRE 0 EUROPE PILOT STUDY 82901 WIRE 0 EAST ASIA AND THE PACIFIC CLINICAL RESEARCH 223068 WIRE 0 33 0 1 0 1 1 1 0 PART III ACCOUNTING METHOD: SCHEDULE F, PART IV: PROCEDURES FOR MONITORING GRANT FUNDS OUTSIDE OF THE U.S. 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 AND THE FINAL SCIENTIFIC REPORT. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. THE GRANTS TO THE MIDDLE EAST/NORTH AFRICA REGION WERE MADE TO THE RESEARCH FUND OF THE HADASSAH MEDICAL ORGANIZATION AND THE HEBREW UNIVERSITY OF JERUSALEM IN ISRAEL. FOREIGN FORMS - INVESTMENTS THE ACTIVITIES REFERENCED IN SCHEDULE F, PART IV ARE LIMITED TO CERTAIN OF THE FOUNDATION'S INVESTMENTS. X X X X X X 1 LAUTMAN MASKA NEILL & COMPANY 1730 RHODE ISLAND AVE NW WASHINGTON DC 20036 MAIL COUNSEL 0 12423334 176400 12246934 12423334 176400 12246934 AL AK AZ AR CA CO CT DE 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 FILM PREMIERE 950743 919437 31306 15556 15750 ATLANTA WALK 1791886 1764040 27846 8421 533 14098 600 4194 587 46543058 43158509 3384549 413873 1672907 765197 76363 456209 49285687 45841986 3443701 437850 1689190 779295 76963 460403 3443701 0 PART IV: PROFESSIONAL FUNDRAISING SERVICES CFF HAD A WRITTEN CONTRACT WITH LAUTMAN MASKA NEILL & COMPANY TO CONSULT ON ITS DIRECT MAIL AND ANNUAL FUND EFFORTS DURING 2021. THE EXPENSE FOR THE PROJECT IS $14,700 PER MONTH OR $176,400 FOR THE ENTIRE YEAR OF SERVICES. IN ADDITION TO THE CONSULTING ACTIVITIES THAT MAY BE CONSIDERED PROFESSIONAL FUNDRAISING SERVICES, CFF ALSO ENGAGED LAUTMAN MASKA NEILL & COMPANY FOR CREATIVE DEVELOPMENT. LAUTMAN MASKA NEILL & COMPANY DOES NOT COLLECT ANY FUNDS ON BEHALF OF CFF. ALL DONATIONS THAT RESULT FROM MAILINGS WITH WHICH LAUTMAN MASKA NEILL & COMPANY ASSISTS ARE MADE PAYABLE DIRECTLY TO THE FOUNDATION. 1 ADVOCATE CHARITABLE FOUNDATION 3075 HIGHLAND PARKWAY SUITE 600 DOWNERS GROVE IL 60515 363297360 501C(3) 147560 0 CF CARE CENTER ADVOCATE HEALTH AND HOSPITALS CORPORATION 3075 HIGHLAND PARKWAY DOWNERS GROVE IL 695151288 362169147 501C(3) 45360 0 CF CARE CENTER ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVENUE ALBANY NY 12298 141338310 501C(3) 115224 0 CLINICAL RESEARCH CENTER ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVENUE ALBANY NY 12298 141338310 501C(3) 178415 0 CF CARE CENTER ALL CHILDREN'S HOSPITAL INC 501 SIXTH AVENUE SOUND ST PETERSBURG FL 33701 590683252 501C(3) 133918 0 CLINICAL RESEARCH CENTER ALL CHILDREN'S HOSPITAL INC 501 SIXTH AVENUE SOUND ST PETERSBURG FL 33701 590683252 501C(3) 187590 0 CF CARE CENTER ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO 225 E CHICAGO AVE CHICAGO IL 606112991 362170833 501C(3) 116842 0 CLINICAL RESEARCH CENTER ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO 225 E CHICAGO AVE CHICAGO IL 606112991 362170833 501C(3) 128976 0 TRAINING ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO 225 E CHICAGO AVE CHICAGO IL 606112991 362170833 501C(3) 193660 0 CLINICAL RESEARCH STUDY ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO 225 E CHICAGO AVE CHICAGO IL 606112991 362170833 501C(3) 262745 0 CF CARE CENTER ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO 225 E CHICAGO AVE CHICAGO IL 606112991 362170833 501C(3) 358517 0 QUALITY IMPROVEMENT ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA 888 N EUCLID AVENUE TUCSON AZ 85721 742652689 IRC 115 34720 0 ADHERENCE ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA 888 N EUCLID AVENUE TUCSON AZ 85721 742652689 IRC 115 166425 0 CF CARE CENTER ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA 888 N EUCLID AVENUE TUCSON AZ 85721 742652689 IRC 115 181638 0 CLINICAL RESEARCH CENTER ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA 888 N EUCLID AVENUE TUCSON AZ 85721 742652689 IRC 115 397195 0 CLINICAL RESEARCH STUDY ARKANSAS CHILDREN'S HOSPITAL RESEARCH INSTITUTE INC 13 CHILDRENS WAY LITTLE ROCK AR 72202 710694931 501C(3) 154910 0 CF CARE CENTER ASCENSION SETON 1345 PHILOMENA STREET AUSTIN TX 78723 741109643 501C(3) 111697 0 CLINICAL RESEARCH CENTER ASCENSION SETON 1345 PHILOMENA STREET AUSTIN TX 78723 741109643 501C(3) 269985 0 CF CARE CENTER ATLANTIC HEALTH SYSTEM 475 SOUTH STREET MORRISTON NJ 07960 521958352 501C(3) 88335 0 CLINICAL RESEARCH CENTER ATLANTIC HEALTH SYSTEM 475 SOUTH STREET MORRISTON NJ 07960 521958352 501C(3) 163050 0 CF CARE CENTER AUGUSTA UNIVERSITY 1120 FIFTEENTH STREET AUGUSTA GA 30912 586002053 IRC 115 34393 0 ADULT CARE AUGUSTA UNIVERSITY RESEARCH INSTITUTE INC 1120 15TH STREET AUGUSTA GA 30912 581418202 501C(3) 103384 0 CLINICAL RESEARCH CENTER AUGUSTA UNIVERSITY RESEARCH INSTITUTE INC 1120 15TH STREET AUGUSTA GA 30912 581418202 501C(3) 369393 0 CF CARE CENTER AUGUSTA UNIVERSITY RESEARCH INSTITUTE INC 1120 15TH STREET AUGUSTA GA 30912 581418202 501C(3) 406388 0 CLINICAL RESEARCH STUDY BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 501C(3) 40035 0 ADULT CARE BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 501C(3) 235789 0 CLINICAL RESEARCH CENTER BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 501C(3) 517974 0 CF CARE CENTER BAYLOR SCOTT & WHITE HEALTH 2401 S 31ST STREET TEMPLE TX 76508 463131350 501C(3) 110970 0 CF CARE CENTER BAYSTATE MEDICAL CENTER INC 759 CHESNUT STREET SPRINGFIELD MA 01199 042790311 501C(3) 60180 0 CF CARE CENTER BETH ISRAEL DEACONESS MEDICAL CENTER 330 BROOKLINE AVENUE BOSTON MA 022155491 042103881 501C(3) 56320 0 CLINICAL RESEARCH BETH ISRAEL MEDICAL CENTER FIRST AVENUE AT 16TH STREET NEW YORK NY 10003 135564934 501C(3) 172061 0 CLINICAL RESEARCH CENTER BETH ISRAEL MEDICAL CENTER FIRST AVENUE AT 16TH STREET NEW YORK NY 10003 135564934 501C(3) 190410 0 CF CARE CENTER BILLINGS CLINIC FOUNDATION 2917 TENTH AVE NORTH BILLINGS MT 59101 810407289 501C(3) 43000 0 ADULT CARE BILLINGS CLINIC FOUNDATION 2917 TENTH AVE NORTH BILLINGS MT 59101 810407289 501C(3) 111515 0 CLINICAL RESEARCH CENTER BILLINGS CLINIC FOUNDATION 2917 TENTH AVE NORTH BILLINGS MT 59101 810407289 501C(3) 261980 0 CF CARE CENTER BOARD OF REGENTS NEVADA SYSTEM OF HIGHER EDUCATION 4505 SOUTH MARYLAND PARKWAY LAS VEGAS NV 89154 886000024 IRC 115 75955 0 PILOT STUDY BOARD OF REGENTS OF THE UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER PO BOX 26901 OKLAHOMA CITY OK 731260901 731563627 501C(3) 120622 0 CLINICAL RESEARCH CENTER BOARD OF REGENTS OF THE UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER PO BOX 26901 OKLAHOMA CITY OK 731260901 731563627 501C(3) 388782 0 CF CARE CENTER BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SYSTEM 21 N PARK STREET MADISON WI 537151218 396006492 501C(3) 65000 0 TRAINING BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SYSTEM 21 N PARK STREET MADISON WI 537151218 396006492 501C(3) 168751 0 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CF CARE CENTER NATIONAL JEWISH MEDICAL AND RESEARCH CENTER 1400 JACKSON STREET DENVER CO 80206 742044647 501C(3) 340596 0 CLINICAL RESEARCH NATIONAL JEWISH MEDICAL AND RESEARCH CENTER 1400 JACKSON STREET DENVER CO 80206 742044647 501C(3) 389719 0 RESEARCH NATIONAL JEWISH MEDICAL AND RESEARCH CENTER 1400 JACKSON STREET DENVER CO 80206 742044647 501C(3) 575447 0 CLINICAL RESEARCH CENTER NATIONAL JEWISH MEDICAL AND RESEARCH CENTER 1400 JACKSON STREET DENVER CO 80206 742044647 501C(3) 1148524 0 CLINICAL RESEARCH STUDY NATIONAL ORGANIZATION OF AFRICAN AMERICANS WITH CYSTIC FIBROSIS 6001 SOUTHWIND DRIVE NORTH LITTLE ROCK AR 72118 852269576 501C(3) 10000 0 COMMUNITY IMPACT NEMOURS CHILDREN'S HEALTH SYSTEM 1600 ROCKLAND ROAD WILMINGTON DE 198033607 590634433 501C(3) 89600 0 CLINICAL RESEARCH STUDY NEMOURS CHILDREN'S HEALTH SYSTEM 1600 ROCKLAND ROAD WILMINGTON DE 198033607 590634433 501C(3) 210571 0 CLINICAL RESEARCH CENTER NEMOURS CHILDREN'S HEALTH SYSTEM 1600 ROCKLAND ROAD WILMINGTON DE 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CF CARE CENTER SUNY UPSTATE MEDICAL UNIVERSITY COLLEGE OF MEDICINE PO BOX 9 ALBANY NY 12201 141368361 501C(3) 34716 0 ADHERENCE SUNY UPSTATE MEDICAL UNIVERSITY COLLEGE OF MEDICINE PO BOX 9 ALBANY NY 12201 141368361 501C(3) 71517 0 CLINICAL RESEARCH SUNY UPSTATE MEDICAL UNIVERSITY COLLEGE OF MEDICINE PO BOX 9 ALBANY NY 12201 141368361 501C(3) 128499 0 ADULT CARE SUNY UPSTATE MEDICAL UNIVERSITY COLLEGE OF MEDICINE PO BOX 9 ALBANY NY 12201 141368361 501C(3) 213550 0 CLINICAL RESEARCH CENTER SUNY UPSTATE MEDICAL UNIVERSITY COLLEGE OF MEDICINE PO BOX 9 ALBANY NY 12201 141368361 501C(3) 579467 0 CF CARE CENTER SUTTER BAY HOSPITALS 475 BRANNAN STREET SAN FRANCISCO CA 941075419 940562680 501C(3) 40340 0 CF CARE CENTER SUTTER MEDICAL CENTER SACRAMENTO PO BOX 160727 SACRAMENTO CA 95833 941156621 501C(3) 101700 0 CF CARE CENTER TAMPA GENERAL HOSPITAL FOUNDATION INC PO BOX 1289 TAMPA FL 33601 237354477 501C(3) 176200 0 CF CARE CENTER TEMPLE UNIVERSITY OF THE COMMONWEALTH SYSTEM OF HIGHER EDUCATION 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GENERAL HOSPITAL) 55 FRUIT STREET BOSTON MA 02114 042697983 501C(3) 414452 0 CLINICAL RESEARCH STUDY THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GENERAL HOSPITAL) 55 FRUIT STREET BOSTON MA 02114 042697983 501C(3) 456888 0 RESEARCH THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GENERAL HOSPITAL) 55 FRUIT STREET BOSTON MA 02114 042697983 501C(3) 1023760 0 QUALITY IMPROVEMENT THE HITCHCOCK FOUNDATION ONE MEDICAL CENTER DRIVE LEBANON NH 03756 020222139 501C(3) 35400 0 ADULT CARE THE HITCHCOCK FOUNDATION ONE MEDICAL CENTER DRIVE LEBANON NH 03756 020222139 501C(3) 156849 0 CLINICAL RESEARCH CENTER THE HITCHCOCK FOUNDATION ONE MEDICAL CENTER DRIVE LEBANON NH 03756 020222139 501C(3) 224515 0 CF CARE CENTER THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501C(3) 28511 0 TRAINING THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501C(3) 34418 0 ADHERENCE THE JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501C(3) 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741109620 170(B)(1)(A)(II) 6000 0 TRAINING WILLIAM MARSH RICE UNIVERSITY 6100 S MAIN MS-16 HOUSTON TX 770051892 741109620 170(B)(1)(A)(II) 53000 0 RESEARCH CENTER WILLIAM MARSH RICE UNIVERSITY 6100 S MAIN MS-16 HOUSTON TX 770051892 741109620 170(B)(1)(A)(II) 54907 0 PILOT STUDY WILLIAM MARSH RICE UNIVERSITY 6100 S MAIN MS-16 HOUSTON TX 770051892 741109620 170(B)(1)(A)(II) 280000 0 THERAPEUTICS DISCOVERY RESEARCH WRIGHT STATE UNIVERSITY 3640 COLONEL GLENN HIGHWAY DAYTON OH 45435 310732831 U.S. STATE 41110 0 ADULT CARE YALE UNIVERSITY 150 MUNSON STREET NEW HAVEN CT 065208327 060646973 501C(3) 26794 0 CLINICAL RESEARCH STUDY YALE UNIVERSITY 150 MUNSON STREET NEW HAVEN CT 065208327 060646973 501C(3) 75990 0 RESEARCH STUDY YALE UNIVERSITY 150 MUNSON STREET NEW HAVEN CT 065208327 060646973 501C(3) 92027 0 CLINICAL RESEARCH CENTER YALE UNIVERSITY 150 MUNSON STREET NEW HAVEN CT 065208327 060646973 501C(3) 112000 0 PILOT STUDY YALE UNIVERSITY 150 MUNSON STREET NEW HAVEN CT 065208327 060646973 501C(3) 140000 0 RESEARCH YALE UNIVERSITY 150 MUNSON STREET NEW HAVEN CT 065208327 060646973 501C(3) 172000 0 TRAINING YALE UNIVERSITY 150 MUNSON STREET NEW HAVEN CT 065208327 060646973 501C(3) 181735 0 CF CARE CENTER YALE UNIVERSITY 150 MUNSON STREET NEW HAVEN CT 065208327 060646973 501C(3) 810000 0 THERAPEUTICS DISCOVERY RESEARCH 228 9 FELLOWSHIPS 26 459523 COMMUNITY IMPACT 3 29689 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 AND THE FINAL SCIENTIFIC REPORT. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. FOR GRANTS TO FOR-PROFIT ORGANIZATIONS THE CF FOUNDATION HAS PROCEDURES IN PLACE TO 1) SEE THAT THE GRANT FUNDS AWARDED ARE SPENT ONLY FOR THE PURPOSE FOR WHICH THE GRANT IS MADE AND 2) OBTAIN FULL AND COMPLETE REPORTS FROM THE GRANTEE ORGANIZATION ON HOW THE FUNDS ARE SPENT CONSISTENT WITH IRS GUIDELINES FOR EXPENDITURE RESPONSIBILITY. THE ORGANIZATION PERFORMS PRE-GRANT INQUIRIES DEALING WITH MATTERS SUCH AS THE IDENTITY, HISTORY, ACTIVITIES, AND PRACTICES OF THE GRANTEE TO GAIN REASONABLE ASSURANCE THAT THEY WILL USE THE GRANT FUNDS FOR THE PURPOSE FOR WHICH RECEIVED. ONCE A GRANT IS APPROVED, A WRITTEN AGREEMENT IS SIGNED BY BOTH THE ORGANIZATION AND THE GRANTEE THAT INCLUDES THE FOLLOWING AGREEMENTS: ANY AMOUNTS NOT USED FOR PURPOSES OF THE GRANT WILL BE REPAID, THE GRANTEE WILL KEEP RECORDS OF RECEIPTS AND EXPENDITURES AND MAKE THEM AVAILABLE TO THE GRANTOR AT REASONABLE TIMES, AND FUNDS CANNOT BE USED TO INFLUENCE LEGISLATION OR UNDERTAKE ANY NONEXEMPT ACTIVITY. SCHEDULE I, PART III: SEE SUPPLEMENTAL INFORMATION FOR PART I, LINE 2 FOR PROCEDURES USED TO MONITOR THESE GRANTS. X X X X X X 1 1 0 0 0 0 0 1 0 JACK MAHLER MD CHIEF INVESTMENT OFFICER 591799 0 801723 0 7599 0 625413 0 32011 0 2058545 0 349170 0 MARC S GINSKY COO (UNTIL 8/2021) 307612 0 182760 0 755439 0 29088 0 39362 0 1314261 0 208550 0 MICHAEL P BOYLE MD PRESIDENT & CEO 544205 0 194921 0 4977 0 404233 0 43657 0 1191993 0 67071 0 ERIC KOEHRSEN MANAGING DIRECTOR, INVESTMENTS 366062 0 429351 0 1168 0 174199 0 42657 0 1013437 0 136176 0 EARL LEE MANAGING DIRECTOR, INVESTMENTS 415733 0 308053 0 1097 0 175456 0 14867 0 915206 0 0 0 WILLIAM SKACH MD EVP & CHIEF SCIENTIFIC OFFICER 513545 0 135245 0 4572 0 141077 0 35820 0 830259 0 44369 0 VERA H TWIGG CFO (UNTIL 7/2021) 240543 0 107550 0 268646 0 95878 0 14203 0 726820 0 107439 0 BRUCE MARSHALL MD EVP & CHIEF MEDICAL OFFICER 500000 0 74072 0 4572 0 136453 0 0 0 715097 0 0 0 JOHN P CLANCY MD VP, CLINICAL RESEARCH 407258 0 73952 0 4035 0 82642 0 39716 0 607603 0 0 0 PRESTON CAMPBELL MD FORMER CEO & STRATEGIC ADVISOR 291363 0 105144 0 2988 0 171210 0 30142 0 600847 0 105144 0 CHRIS GEGELYS CHIEF LEGAL OFFICER & SECRETARY 400966 0 60199 0 3994 0 77034 0 43657 0 585850 0 0 0 GENTIANA AROVAS INVESTMENT OPERATIONS DIRECTOR 360205 0 105840 0 1444 0 74448 0 42657 0 584594 0 0 0 ANTHONY DURMOWICZ MD VP, CLINICAL DEVELOPMENT 424420 0 55093 0 6360 0 78791 0 2000 0 566664 0 0 0 MAUREEN FRASER SVP, FIELD MNGMT (UNTIL 5/2021) 119965 0 34141 0 331309 0 49794 0 25548 0 560757 0 0 0 IRENA BARISIC AS OF 62021 EVP, CFAO & ASST SEC. & ASST TRSR 286373 0 60000 0 570 0 28569 0 1266 0 376778 0 0 0 PART I, LINE 7 SEVERAL INDIVIDUALS LISTED IN FORM 990, PART VII, SECTION A, LINE 1A, PARTICIPATED IN THE FOUNDATION'S INCENTIVE COMPENSATION PLAN, FROM WHICH NON-FIXED PAYMENTS NOT DESCRIBED IN LINES 5 AND 6 WERE PAID. THE INCENTIVE COMPENSATION PLAN PAYS NON-FIXED PAYMENTS SUBJECT TO, AND BASED ON, THE ACHIEVEMENTS OF ANNUAL PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD OF TRUSTEES. 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 OF THE BOARD. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES SUCH AS ROYALTY STREAMS OR LUMP-SUM PAYMENTS, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. PART I, LINE 4A: A FORMER OFFICER LISTED ON THE FORM 990, PART VII, SECTION A RECEIVED PAYMENTS UNDER A SEVERANCE ARRANGEMENT, AS DESCRIBED IN FURTHER DETAIL IN SCHEDULE J, PART III, FOOTNOTE 10, 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, 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, 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. A) NAME: M. BOYLE, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $544,205; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $127,850, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $67,071; (B)(III) OTHER REPORTABLE COMPENSATION: TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM AND OTHER TAXABLE BENEFITS- $4,977,; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $29,088, SERP (4) - $100,000, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $275,145; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $32,862, EMPLOYEE CONTRIBUTION TO HEALTH SAVINGS ACCOUNT BENEFIT - $6,200, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,595; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $67,071. CYSTIC FIBROSIS FOUNDATION. (A) NAME: M. GINSKY.; (B)(I) BASE COMPENSATION: BASE SALARY - $307,613; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $94,205, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $88,555; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $2,828, SECTION 457(B) PLAN (5) - $19,500, VESTED SERP ACCOUNT (7) - $189,841, SEVERANCE (10) - $523,362, PTO PAYOUT - $19,908; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $29,088; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $32,958, EMPLOYEE CONTRIBUTION TO HEALTH SAVINGS ACCOUNT BENEFIT - $3,577, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $2,828; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $208,550. CYSTIC FIBROSIS FOUNDATION. (A) NAME: I. BARISIC; (B)(I) BASE COMPENSATION: BASE SALARY - $286,373; (B)(II) BONUS & INCENTIVE COMPENSATION: BONUS - $60,000; (B)(III) GROUP TERM LIFE INSURANCE PREMIUM - $570; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $28,569; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $1,101, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $165. CYSTIC FIBROSIS FOUNDATION. (A) NAME: V. TWIGG; (B)(I) BASE COMPENSATION: BASE SALARY - $240,543; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $69,895, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $37,655; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN (5) - $19,500, SECTION 457(B) PLAN DISTRIBUTION (11) - $154,180, VESTED SERP ACCOUNT (8) - $94,966; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $29,088, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $66,790; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $10,526, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $507, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $3,170; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) $107,439. CYSTIC FIBROSIS FOUNDATION. (A) NAME: J. MAHLER; (B)(I) BASE COMPENSATION: BASE SALARY - $591,799; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (9) - $801,723; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $7,523; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $29,088, SERP (4) - $100,000, DEFERRED RETENTION INCENTIVE (9) $496,325; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $22,810, EMPLOYEE CONTRIBUTION TO HEALTH SAVINGS ACCOUNT BENEFIT - $6,200, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $3,001; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $349,170. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $291,363; (B)(II) BONUS & INCENTIVE COMPENSATION: LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $105,144; (B)(III) OTHER REPORTABLE COMPENSATION: TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM AND OTHER - $2,988; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $29,088, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $142,122; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT -$21,505, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,750, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $5,887; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $105,144. (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. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES SUCH AS ROYALTY STREAMS OR LUMP-SUM PAYMENTS, 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 2021 PLAN YEAR. (3) THIS AMOUNT IS INCLUDED IN COLUMN B OF THIS FORM 990 AND HAS ALREADY BEEN PREVIOUSLY REPORTED AS COMPENSATION ON PRIOR YEARS' FORM 990S, AND THEREFORE (AS REQUIRED BY THE INSTRUCTIONS) IS DOUBLE-REPORTED. (4) 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. F. CFF RETAINS THE RIGHT TO AMEND OR TERMINATE THE SERP AT ANY TIME. (5) 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. CONTRIBUTIONS TO THE 457(B) PLAN ARE SUBJECT TO ANNUAL IRS LIMITS ($19,500 FOR 2021). 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. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES SUCH AS ROYALTY STREAMS OR LUMP-SUM PAYMENTS, 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 2021 (I.E., WITH RESPECT TO THE 2019-2021, 2020-2022 AND 2021-2023 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 12/31/21, 12/31/22 AND 12/31/23 TO BE ELIGIBLE TO RECEIVE FULL PAYMENT OF THE AWARD FOR THE 2019-2021, 2020-2022 AND 2021-2023 PERFORMANCE PERIODS, RESPECTIVELY. THE AWARD RELATING TO THE 3-YEAR PERFORMANCE PERIOD ENDING 12/31/20 WAS PAID IN 2021, 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 2020, 2019 AND 2018 WAS REPORTED IN COLUMN (C) OF THE FORM 990 FOR EACH OF THOSE YEARS). (7) THIS AMOUNT BECAME VESTED AND TAXABLE IN 2021 UNDER THE SERP DESCRIBED IN FOOTNOTE (4) ABOVE, UNDER WHICH THE INDIVIDUAL RECEIVED CONTRIBUTIONS FROM 2017-2021. AS REQUIRED, A PORTION OF 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). THOSE PREVIOUSLY REPORTED AMOUNTS ARE REFLECTED IN COLUMN F OF THIS FORM 990. (8) THIS AMOUNT BECAME VESTED AND TAXABLE IN 2021 UNDER THE SERP DESCRIBED IN FOOTNOTE (4) ABOVE, UNDER WHICH THE INDIVIDUAL RECEIVED CONTRIBUTIONS FROM 2019-2021. AS REQUIRED, A PORTION OF 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). THOSE PREVIOUSLY REPORTED AMOUNTS ARE REFLECTED IN COLUMN F OF THIS FORM 990. A PORTION OF THIS AMOUNT ALSO REFLECTS A DISTRIBUTION OF POST-VESTING DATE EARNINGS GENERATED ON AMOUNTS THAT PREVIOUSLY BECAME VESTED AND WERE REPORTED AS TAXABLE COMPENSATION ON A PRIOR YEAR'S FORM 990. (9) A. THE INVESTMENT DEPARTMENT INCENTIVE AND RETENTION PLAN PROVIDES AN AWARD THAT MAY BE EARNED SUBJECT TO, AND BASED ON, ACHIEVEMENT OF ANNUAL PERFORMANCE STANDARDS ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. UNTIL A PARTICIPANT REACHES AGE 63, 50% OF THE ANNUAL AWARD IS PAID FOLLOWING THE COMPLETION OF THE PERFORMANCE YEAR AND THE REMAINING 50% IS PAID AS DESCRIBED BELOW. AFTER A PARTICIPANT REACHES AGE 63, 100% OF THE ANNUAL AWARD IS PAID FOLLOWING THE COMPLETION OF THE PERFORMANCE YEAR. B. UNDER THE PLAN, UNTIL THE PARTICIPANT REACHES AGE 63, THE REMAINING 50% OF THE EARNED AWARD IS A DEFERRED RETENTION INCENTIVE. THIS DEFERRED RETENTION INCENTIVE IS SUBJECT TO A SUBSTANTIAL RISK OF FORFEITURE. THE DEFERRED RETENTION INCENTIVE BECOMES VESTED ON MARCH 31 TWO YEARS AFTER IT IS DETERMINED THE AWARD HAS BEEN EARNED AND IS PAID IMMEDIATELY THEREAFTER. THE DEFERRED RETENTION INCENTIVE IS FORFEITED BY THE PARTICIPANT IF THE PARTICIPANT VOLUNTARILY TERMINATES EMPLOYMENT OR IS TERMINATED FOR CAUSE PRIOR TO ATTAINING THE VESTNG DATE. DEFERRED INTERESTS ARE SUBJECT TO THE CLAIMS OF CFF'S BAKRPTCY CREDITORS. IN THE EVENT OF A CFF BANKRUPTCY, THE PARTICIPANT WOULD BECOME A GENERAL UNSECURED CREDITOR OF CFF. C. THE PLAN'S DESIGN WAS REVIEWED AND OPINED UPON AS REASONABLE BY AN INDEPENDENT COMPENSATION CONSULTANT. D. CFF RETAINS THE RIGHT TO AMEND OR TERMINATE THE PLAN AT ANY TIME. (10) AS PART OF A SEVERANCE AGREEMENT, THE EXECUTIVE RECEIVED THIS AMOUNT, THE SEVERANCE AMOUNT WAS REVIEWED AND OPINED UPON AS REASONABLE BY AN INDEPENDENT COMPENSATION CONSULTANT AND APPROVED BY THE ORGANIZATION'S COMPENSATION COMMITTEE IN ACCORDANCE WITH THE IRS'S INTERMEDIATE SANCTIONS RULES. (11) THIS AMOUNT WAS DISTRIBUTED AND TAXABLE IN 2021 UNDER THE 457(B) PLAN DESCRIBED IN FOOTNOTE (5) ABOVE. A PORTION OF THE CONTRIBUTIONS TO THIS 457(B) PLAN THAT GENERATED THE AMOUNT REPORTED IN COLUMN B (III) OF THIS FORM 990 WERE REPORTED ON PRIOR YEARS' FORM 990S IN COLUMN (B). THOSE PREVIOUSLY REPORTED AMOUNTS ARE REFLECTED IN COLUMN F OF THIS FORM 990. X 44 55288 NET CASH RECEIPTS X 99 1653343 NET CASH RECEIPTS X TANGIBLE AUCTION ITEMS 5952 2609935 NET CASH RECEIPTS 0 0 1 1 SCHEDULE M, PART I, LINE 6: THIRD PARTY SELLER CYSTIC FIBROSIS FOUNDATION CONTRACTS WITH A THIRD PARTY TO ADMINISTER ITS VEHICLE DONATION PROGRAM AND SELL DONATED VEHICLES. THE THIRD PARTY DOES NOT SOLICIT DONATIONS. FORM 990, PART III, LINE 1: THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION IS TO CURE CYSTIC FIBROSIS (CF) AND TO PROVIDE ALL PEOPLE WITH CF THE OPPORTUNITY TO LEAD LONG, FULFILLING LIVES BY FUNDING RESEARCH AND DRUG DEVELOPMENT, PARTNERING WITH THE CF COMMUNITY, AND ADVANCING HIGH QUALITY, SPECIALIZED CARE. FORM 990, PART III, LINE 4A: MEDICAL PROGRAMS - SINCE 1955, THE CYSTIC FIBROSIS FOUNDATION HAS BEEN DEDICATED TO CURING AND CONTROLLING CYSTIC FIBROSIS (CF). THE CYSTIC FIBROSIS FOUNDATION IS THE WORLD'S LEADER IN THE SEARCH FOR A CURE FOR CYSTIC FIBROSIS, A LIFE-THREATENING GENETIC DISEASE THAT AFFECTS MORE THAN 32,100 PEOPLE IN THE UNITED STATES, AND 70,000 WORLDWIDE. THE CF FOUNDATION HAS AND CONTINUES TO FUND HUNDREDS OF MILLIONS OF DOLLARS IN RESEARCH COSTS TO HELP DISCOVER/DEVELOP EFFECTIVE CF DRUGS AND THERAPIES. IN 2021, THE CF FOUNDATION INVESTED $266 MILLION INTO RESEARCH AND CARE. DUE IN PART TO THE FOUNDATION'S EFFORTS, THE LIFE EXPECTANCY OF PEOPLE WITH CF HAS MORE THAN DOUBLED IN THE LAST 30 YEARS, AND RESEARCH TO FIND A CURE IS MORE PROMISING THAN EVER BEFORE. THE CF FOUNDATION HAS ATTRACTED INDUSTRY TO JOIN ITS MISSION BY FUNDING DRUG DISCOVERY AND DEVELOPMENT RESEARCH CONDUCTED BY BIOTECHNOLOGY COMPANIES. IT ALSO PROVIDES MATCHING AWARDS TO CF DRUG DEVELOPERS FOR CF RESEARCH AND FUNDS A SPECIALIZED CF CLINICAL TRIALS NETWORK OF NEARLY 90 FOUNDATION-ACCREDITED CARE CENTERS. AS A RESULT OF THIS FUNDING, IN 2021 THE CF DRUG DEVELOPMENT PIPELINE HAD 42 THERAPIES IN DEVELOPMENT IN ADDITION TO 16 FDA APPROVED TREATMENTS THAT ADDRESS COMPLICATIONS LIKE INFECTIONS AND A POTENTIAL CURE. THE TREATMENT AND CARE PROTOCOLS DEVELOPED BY THE CF FOUNDATION ARE HELPING TENS OF THOUSANDS OF PEOPLE WITH THE DISEASE LIVE LONGER, HEALTHIER LIVES. TO SUPPORT ITS MISSION, THE FOUNDATION ALSO FUNDS AND ACCREDITS A NATIONWIDE NETWORK OF MORE THAN 130 CARE CENTERS. THIS NETWORK PROVIDES THE BEST CARE FOR PEOPLE WITH CF AND HAS BEEN RECOGNIZED BY THE NATIONAL INSTITUTES OF HEALTH AS A MODEL OF CARE FOR A CHRONIC DISEASE. IN 2021, THE FOUNDATION PROVIDED MORE THAN $47 MILLION OF SUPPORT FOR CARE CENTERS AND CLINICIANS. THE FOUNDATION ALSO MANAGES A PATIENT REGISTRY OF PEOPLE WITH CF, COLLECTING INFORMATION ON THE HEALTH STATUS OF MORE THAN 31,411 PEOPLE WITH CF AND PROVIDING CAREGIVERS AND RESEARCHERS CRITICAL INFORMATION. THIS INVALUABLE TOOL HELPS IDENTIFY NEW HEALTH TRENDS AND EFFECTIVE TREATMENTS AND IMPROVE THE QUALITY OF CF CARE. THE PATIENT REGISTRY IS AN INTERNATIONALLY RECOGNIZED MODEL FOR OTHER NONPROFIT HEALTH ORGANIZATIONS, INCLUDING OTHER CF ADVOCACY GROUPS. FORM 990, PART III, LINE 4B: COMMUNITY SERVICES - THE FOUNDATION PROVIDES MUCH-NEEDED SUPPORT FOR PATIENTS AND THEIR FAMILIES AS THEY MANAGE THE PHYSICAL, EMOTIONAL, AND FINANCIAL CHALLENGES OF LIVING WITH CF FROM SUPPORTING SPECIALIZED QUALITY CF CARE, TO PROVIDING INFORMATION AND RESOURCES TO HELP PEOPLE WITH CF BECOME EFFECTIVE PARTNERS IN THEIR CARE, TO DEVELOPING PROGRAMS TO HELP CONNECT PEOPLE WITH CF AND THEIR LOVED ONES WITH OTHERS IN THE CF COMMUNITY SO THEY FEEL LESS ALONE. APPROXIMATELY 32,100 PEOPLE WITH CF WERE SERVED IN 2021, INCLUDING APPROXIMATELY 779 INDIVIDUALS WHO WERE NEWLY DIAGNOSED. LACK OF ADEQUATE INSURANCE COVERAGE FOR CF THERAPIES HAS BEEN A CONSISTENT CONCERN FOR THOSE LIVING WITH THE DISEASE AND THEIR FAMILIES. COMPASS IS A HIGHLY PERSONALIZED SERVICE TAILORED TO AN INDIVIDUAL'S CIRCUMSTANCES RELATED TO COMPLEX INSURANCE, FINANCIAL, LEGAL, AND OTHER ISSUES THAT CAN PREVENT ACCESS TO MUCH-NEEDED CF THERAPIES AND CARE. IN 2021, SKILLED COMPASS CASE MANAGERS FIELDED MORE THAN 10,000 REQUESTS FROM PEOPLE WITH CF, THEIR FAMILIES, AND THEIR PROVIDER NETWORK, HELPING PEOPLE BETTER UNDERSTAND AND MAXIMIZE THEIR INSURANCE COVERAGE AND BENEFITS, AND GET HELP WITH OTHER NEEDS RELATED TO DAILY LIFE WITH CF. CASE MANAGERS ALSO ASSISTED WITH FINDING RESOURCES FOR ISSUES RELATED TO LIFE WITH CF THAT CAN AFFECT ACCESS, INCLUDING BASIC LIVING AND FOOD EXPENSES. TODAY, MORE THAN HALF OF ALL PEOPLE WITH CF ARE AGE 18 OR OLDER. IN 2021, APPROXIMATELY 1,175 PEOPLE WITH CF AND THEIR FAMILY MEMBERS JOINED VIRTUAL EVENTS, INCLUDING BREATHECON, RESEARCHCON, AND CF MINICON: TRANSPLANT, DESIGNED BY AND FOR ADULTS WITH CF, THEIR FAMILIES, CLINICIANS, AND RESEARCHERS. THESE GATHERINGS PROVIDED AN OPPORTUNITY FOR THE CF COMMUNITY TO CONNECT, SHARE, AND LEARN FROM PEERS THROUGH OPEN AND HONEST DIALOGUE. FORM 990, PART III, LINE 4C: PUBLIC AND PROFESSIONAL INFORMATION AND EDUCATION - TO SUPPORT ITS MISSION, THE CF FOUNDATION CREATED EDUCATIONAL CONTENT DESIGNED TO INFORM AND SUPPORT PEOPLE WITH CF AND THEIR FAMILIES, MEDICAL PROFESSIONALS, AND THE GENERAL PUBLIC ABOUT THE DISEASE. IN 2021, THERE WERE 289 PUBLICATIONS AND 32 VIDEOS PRODUCED AND MADE AVAILABLE TO SUPPORT EDUCATION AND AWARENESS. YEAR-ROUND MEETINGS AND CONFERENCES PROVIDE UPDATES FOR CF RESEARCHERS, PHYSICIANS, AND ALLIED HEALTH PROFESSIONALS AND CREATE OPPORTUNITIES FOR COLLABORATION ON FUTURE CF RESEARCH PROJECTS AND TREATMENT/CARE EFFORTS. IN 2021, OVER 3,033,553 UNIQUE VISITORS CAME TO THE CF FOUNDATION'S WEBSITE. THE FOUNDATION LAUNCHED A NEW WEBSITE IN 2021 TO BETTER SUPPORT AND INFORM PEOPLE WITH CF AND THEIR FAMILIES, CLINICIANS, AND RESEARCHERS. IN ADDITION TO MANY UPDATED ARTICLES AND CONTENT SECTIONS BUILT FOR THE NEW WEBSITE, THE FOUNDATION PUBLISHED 98 BLOG POSTS. FORM 990, PART VI, SECTION B, LINE 11B REVIEW OF 990 BY GOVERNING BODY THE CYSTIC FIBROSIS FOUNDATION BOARD OF TRUSTEES RECEIVES A DRAFT OF THE FORM 990 PRIOR TO ITS BEING FILED, WITH SUFFICIENT TIME FOR REVIEW AND COMMENT ALLOWED. THE COMPENSATION COMMITTEE OF THE BOARD OF TRUSTEES AND THE FOUNDATION'S ERISA ATTORNEYS REVIEW THE EXECUTIVE COMPENSATION SECTIONS OF THE FORM 990. THE AUDIT COMMITTEE OF THE BOARD OF TRUSTEES ALSO REVIEWS THE FORM 990 AS PART OF ITS CHARTERED RESPONSIBILITIES. IN ALL CASES THE CYSTIC FIBROSIS FOUNDATION BOARD OF TRUSTEES RECEIVES A COMPLETE COPY OF THE FINAL FORM 990 BEFORE IT IS FILED. FORM 990, PART VI, SECTION B, LINE 12C CONFLICT OF INTEREST MONITORING A CONFLICT OF INTEREST DISCLOSURE STATEMENT IS COMPLETED ANNUALLY BY EACH BOARD MEMBER, OFFICER, AND KEY EMPLOYEE. POTENTIAL CONFLICTS ARE REPORTED TO THE GOVERNANCE COMMITTEE OR THE BOARD OF TRUSTEES. WHEN ANY MATTER IS DEEMED A POTENTIAL CONFLICT OF INTEREST AND REQUIRES ACTION BY THE BOARD OF TRUSTEES, THE INTERESTED TRUSTEE OR OFFICER IS REQUIRED TO BE EXCUSED FROM THE ROOM IN WHICH THE BOARD OR ITS COMMITTEE 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 2021 AND HAD NO UNRESOLVED CONFLICTS OF INTEREST. FORM 990, PART VI, SECTION B, LINE 15 DETERMINING COMPENSATION: LINE 15A AND 15B THE TOTAL COMPENSATION OF EXECUTIVES AT THE CYSTIC FIBROSIS FOUNDATION 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. 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. SPECIFICALLY, THE COMMITTEE: (1) IS COMPOSED ENTIRELY OF NON-EMPLOYEE VOLUNTEER DIRECTORS WHO HAVE NO FAMILIAL, BUSINESS OR SIGNIFICANT PERSONAL RELATIONSHIPS WITH THE CF FOUNDATION 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 CF FOUNDATION'S MISSION SUCCESS. (3) ENGAGES AN INDEPENDENT COMPENSATION CONSULTING FIRM TO COMPILE APPROPRIATE COMPARABILITY DATA (INCLUDING COMPENSATION MARKET INFORMATION FOR PEERS WITH WHOM THE CF FOUNDATION 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 OFFICERS OR KEY EMPLOYEES OF THE ORGANIZATION: PRESIDENT & CEO EXECUTIVE VICE PRESIDENT, COO AND SECRETARY EXECUTIVE VICE PRESIDENT AND CFAO CHIEF INVESTMENT OFFICER SENIOR VP, THERAPEUTICS DEVELOPMENT EXECUTIVE VICE PRESIDENT & CHIEF SCIENTIFIC OFFICER EXECUTIVE VICE PRESIDENT & CHIEF MEDICAL OFFICER THE PROCESS WAS LAST UNDERTAKEN IN 2020 WITH RESPECT TO COMPENSATION TO BE PAID IN 2021 TO ALL THE OFFICERS/KEY EMPLOYEES NAMED ABOVE. FORM 990, PART VI, SECTION C, LINE 19 PUBLIC INSPECTION FORMS 1023 AND 990-T FOR THE ORGANIZATION WERE AVAILABLE ON ITS WEBSITE, CFF.ORG AND THE ORGANIZATION'S WEBSITE PROVIDED A DIRECT LINK TO ITS FORM 990 ON GUIDESTAR.ORG. THE FOUNDATION'S GOVERNING DOCUMENTS (BYLAWS AND ARTICLES OF INCORPORATION) WERE AVAILABLE UPON REQUEST BY CONTACTING THE NATIONAL OFFICE OF THE CYSTIC FIBROSIS FOUNDATION IN WRITING OR BY PHONE. INFORMATION ON HOW TO OBTAIN THE GOVERNING DOCUMENTS WAS AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG, DURING 2021. THE BOARD AND OFFICER CONFLICT OF INTEREST POLICY AND THE AUDITED FINANCIAL STATEMENTS WERE AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG, DURING 2021. FORM 990, PART VI, LINE 10B: CYSTIC FIBROSIS FOUNDATION HAS NUMEROUS OFFICES LOCATED ACROSS THE UNITED STATES WHICH ADHERE TO THE POLICIES AND PROCEDURES OF THE ORGANIZATION. 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