2023-11-14T15:36:31-06:00 2022-12-31 135565207 KPMG LLP 8350 BROAD STREET SUITE 900 MCLEAN VA 22102 990 2022-01-01 131930701 CYSTIC FIBROSIS FOUNDATION CYST 3019514422 4550 MONTGOMERY AVENUE 1100N BETHESDA MD 20814 IRENA BARISIC EVP, COO, AND CFO 3019514422 2023-11-08 1 IRENA BARISIC 999009999 1 BRIAN KEARNS P02061479 7032868000 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z MICHAEL P BOYLE MD 4550 MONTGOMERY AVENUE 1100N BETHESDA MD 20814 1350372542 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 16 890 54572 7323291 1108726 86536159 97948958 1263333 2555705 306161908 128066687 23276151 20059002 417237551 248630352 178329656 184032962 0 0 107679100 116829042 176400 176400 30435741 89426030 95625710 375611186 396664114 41626365 -148033762 5691109976 4735058992 274479667 291339976 5416630309 4443719016 X SEE SCHEDULE O 0 0 282331775 178261101 10366808 SEE SCHEDULE O 21891088 5771860 SEE SCHEDULE O 19125953 SEE SCHEDULE O 323348816 1 1 0 1 0 0 0 0 0 0 1 1 0 0 1 1 1 0 0 0 1 1 0 1 1 1 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 1 0 0 1 1278 2 1 890 1 1 1 0 0 0 0 1 1 1 1 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 AVENUE SUITE N BETHESDA MD 20814 MICHAEL P BOYLE MD PRESIDENT & CEO 40.00 1.00 X X 950256 0 399526 LOUIS A DEFALCO VICE CHAIR 5.00 0.00 X 0 0 0 CAROLE B GRIEGO MD TRUSTEE 3.00 0.00 X 0 0 0 CATHERINE C MCLOUD TRUSTEE 3.00 0.00 X 0 0 0 CHAD T MOORE TRUSTEE 3.00 0.00 X 0 0 0 DAVID A MOUNT TREASURER 3.00 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 DOMINIC J CARUSO TRUSTEE 3.00 0.00 X 0 0 0 PAUL A MOTENKO TRUSTEE 3.00 0.00 X 0 0 0 TERESA L ELDER VICE CHAIR 5.00 0.00 X 0 0 0 ERIC SCHNEIDER MD TRUSTEE 3.00 0.00 X 0 0 0 STEVEN SHAK MD TRUSTEE 3.00 0.00 X 0 0 0 JOHN S WEINBERG EXECUTIVE VICE CHAIR 5.00 0.00 X 0 0 0 PAUL W WHETSELL TRUSTEE 3.00 0.00 X 0 0 0 KC BRYAN WHITE CHAIR 8.00 0.00 X 0 0 0 JESSICA H BOYD MD TRUSTEE 3.00 0.00 X 0 0 0 IRENA BARISIC EVP, CFAO, ASST. SEC. & ASST. TRSR. 40.00 1.00 X 557940 0 71381 MICHAEL B CAVADEL SVP, CHIEF LEGAL OFFICER, & SEC. 40.00 1.00 X 194080 0 28360 JACK MAHLER MD CHIEF INVESTMENT OFFICER 40.00 0.00 X 2463847 0 230935 BRUCE MARSHALL MD EVP & CHIEF MEDICAL OFFICER 40.00 0.00 X 692205 0 104713 JOHN P CLANCY MD SVP, CLINICAL RESEARCH 40.00 0.00 X 551336 0 154612 WILLIAM SKACH MD EVP & CHIEF SCIENTIFIC OFFICER 40.00 0.00 X 455835 0 61418 EARL LEE MANAGING DIRECTOR, INVESTMENTS 40.00 0.00 X 1023013 0 234362 ERIC KOEHRSEN MANAGING DIRECTOR, INVESTMENTS 40.00 0.00 X 921034 0 248237 MARY DWIGHT CHIEF POLICY & ADVOCACY OFFICER 40.00 0.00 X 543012 0 129909 ANTHONY DURMOWICZ MD VP, CLINICAL DEVELOPMENT 40.00 0.00 X 574023 0 64672 MARYBETH MCMAHON CHIEF OF STAFF 40.00 0.00 X 552564 0 92779 PRESTON CAMPBELL MD FORMER CEO & STRATEGIC ADVISOR 40.00 0.00 X 393943 0 62168 CHRIS GEGELYS FORMER CHIEF LEGAL OFFICER 0.00 0.00 X 176462 0 0 MARC S GINSKY FORMER COO 0.00 0.00 X 160000 0 0 VERA H TWIGG FORMER EVP, CFO 0.00 0.00 X 103286 0 0 10312836 0 1883072 268 1 1 0 VERTEX PHARMACEUTICALS INC 50 NORTHERN AVENUE BOSTON MA 02210 CONTRACTED RESEARCH 10000000 ELOXX PHARMACEUTICALS 950 WINTER STREET WALTHAM MA 02451 CONTRACTED RESEARCH 8811900 PIONEERING MEDICINE (CF) LLC 55 CAMBRIDGE PARKWAY STE 800E CAMBRIDGE MA 02142 CONTRACTED RESEARCH 8000000 SYNSPIRA THERAPEUTICS INC 100 SPEEN STREET FRAMINGHAM MA 01701 CONTRACTED RESEARCH 5450000 ARMATA PHARMACEUTICALS INC 4503 GLENCOE AVENUE MARINA DEL RAY CA 90292 CONTRACTED RESEARCH 2500000 118 303736 56151039 41494183 9893530 97948958 SCIENTIFIC CONFERENCE 611600 2290846 2290846 DATA SAFETY MONITORING 541900 264859 264859 2555705 63753516 7323291 56430225 14016961 1867108 12149853 1153650164 1089336993 64313171 64313171 64313171 12338183 56151039 12338183 0 106070 67014 39056 39056 REFUNDED/CANCELLED GRA 900099 5943995 5943995 REIMBURSEMENT PROCEEDS 900099 58990 58990 6002985 248630352 10366808 7323291 132991295 173015994 173015994 510431 510431 10506537 10506537 6916442 3669840 1915873 1330729 895859 475340 248155 172364 84064519 44604339 23286099 16174081 6044963 3207436 1674471 1163056 13002247 6898946 3601658 2501643 5905012 3199151 1475098 1230763 272819 126112 146707 362937 362937 724854 724854 176400 176400 2418459 2418459 5338970 4490002 817253 31715 20290 6696 3449 10145 5955346 3598398 483925 1873023 13411352 7861341 2927348 2622663 7346178 4569675 1239716 1536787 1482316 964156 210149 308011 7899087 6717968 408670 772449 2238383 1759128 203541 275714 819709 565989 217511 36209 CONTRACTED RESEARCH 44542945 44542945 TRAINING 467112 251740 170727 44645 MEDICAL QUALITY IMPROVE 184481 184481 SPIROMETERS 107900 107900 2032572 789417 1067811 175344 396664114 323348816 42879557 30435741 9916 825 70751911 89344692 8629010 16374636 23159403 23189779 305397 209153 7623850 5923684 30915068 20485100 7641454 10429968 3935176433 2713899331 1576278160 1734329559 50147851 75899728 11386591 65457637 5691109976 4735058992 40322607 32393816 231895234 226137686 2261826 2196254 0 30612220 274479667 291339976 X 5398556832 4421196361 18073477 22522655 5416630309 4443719016 5691109976 4735058992 -148033762 -824877531 0 X 0 1 X 1 0 X 108058591 108894890 73199355 86536159 97948958 474637953 108058591 108894890 73199355 86536159 97948958 474637953 474637953 66681682 95519254 95019118 74598441 75903369 407721864 15369965 15976419 9386514 6491042 12503243 59727183 942087000 69884503 0.50380 0.51340 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: REIMBURSEMENT PROCEEDS - 2018 AMOUNT: $ 467,265. 2019 AMOUNT: $ 29,624. 2020 AMOUNT: $ 2,889,947. 2021 AMOUNT: $ 0. 2022 AMOUNT: $ 58,990. EMPLOYEE RETENTION CREDIT - 2020 AMOUNT: $ 2,653,151. 2021 AMOUNT: $ 3,032,541. 2022 AMOUNT: $ 0. GROSS FUNDRAISING REVENUE - 2018 AMOUNT: $ 14,774,450. 2019 AMOUNT: $ 15,811,603. 2020 AMOUNT: $ 3,754,416. 2021 AMOUNT: $ 3,443,701. 2022 AMOUNT: $ 12,338,183. GROSS GAMING REVENUE - 2018 AMOUNT: $ 128,250. 2019 AMOUNT: $ 135,192. 2020 AMOUNT: $ 89,000. 2021 AMOUNT: $ 14,800. 2022 AMOUNT: $ 106,070. PART II, LINE 12 GROSS RECEIPTS FROM RELATED ACTIVITIES THE FOUNDATION FOSTERS COLLABORATION WITHIN THE SCIENTIFIC COMMUNITY BY HOSTING A LARGE SCIENTIFIC CONFERENCE THAT PROVIDES A FORUM FOR RESEARCHERS AND CAREGIVERS TO SHARE THEIR PRACTICES AND INVESTIGATION RESULTS WITH ONE ANOTHER. REGISTRATION 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 27852 1 2970 0 1 1196042 0 1 813 1227677 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. 6367095 2930086 3437009 24547973 17555014 6992959 10429968 PVT EQTY & OTHR ILLIQUID 1067097065 F GLOBAL PUBLIC EQUITY 219592042 F OPPORTUNISTIC 443859465 F PERPETUAL TRUSTS & OTHER 3780987 F 1734329559 OPERATING LEASE LIABILITIES 30612220 30612220 X -589442651 -824877531 -824877531 235434880 13195472 13195472 248630352 383468642 0 383468642 13195472 13195472 396664114 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, 2022 AND 2021. 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 GRANTMAKING NONE 7054422 NORTH AMERICA GRANTMAKING NONE 2779771 EAST ASIA AND THE PACIFIC GRANTMAKING NONE 451861 MIDDLE EAST AND NORTH AFRICA GRANTMAKING NONE 220483 CENTRAL AMERICA & CARIBBEAN INVESTMENTS 971796155 EAST ASIA & PACIFIC INVESTMENTS 128313887 EUROPE INVESTMENTS 220162836 NORTH AMERICA INVESTMENTS 47459977 MIDDLE EAST AND NORTH AFRICA INVESTMENTS 6680008 NORTH AMERICA PROGRAM SERVICES CONTRACTED RESEARCH 450000 EUROPE PROGRAM SERVICES CONTRACTED RESEARCH 669229 EAST ASIA AND THE PACIFIC PROGRAM SERVICES CONTRACTED RESEARCH 200000 SOUTH ASIA PROGRAM SERVICES CONTRACTED RESEARCH 100000 0 0 0 0 0 0 1378239392 8099237 1386338629 EUROPE CLINICAL CARE RESEARCH 151439 WIRE 0 NORTH AMERICAN CLINICAL CARE RESEARCH 705294 WIRE 0 EUROPE CLINICAL RESEARCH 2002437 WIRE 0 EUROPE CLINICAL RESEARCH 328473 WIRE 0 EUROPE CLINICAL RESEARCH 286686 WIRE 0 NORTH AMERICA CLINICAL RESEARCH 473040 WIRE 0 MIDDLE EAST AND NORTH AFRICA CLINICAL RESEARCH 81189 WIRE 0 EUROPE CLINICAL RESEARCH 719916 WIRE 0 EUROPE CLINICAL RESEARCH CENTER 1221205 WIRE 0 NORTH AMERICA CLINICAL RESEARCH CENTER 49860 WIRE 0 NORTH AMERICA CLINICAL RESEARCH CENTER 143605 WIRE 0 EUROPE CLINICAL RESEARCH STUDY 156570 WIRE 0 EUROPE CLINICAL RESEARCH STUDY 75861 WIRE 0 NORTH AMERICA CLINICAL RESEARCH STUDY 182606 WIRE 0 NORTH AMERICA CLINICAL RESEARCH STUDY 87539 WIRE 0 EAST ASIA AND THE PACIFIC CLINICAL RESEARCH STUDY 89450 WIRE 0 NORTH AMERICAN CLINICAL RESEARCH STUDY 168000 WIRE 0 NORTH AMERICA CLINICAL RESEARCH STUDY 301170 WIRE 0 EUROPE CLINICAL RESEARCH STUDY 120000 WIRE 0 NORTH AMERICA PILOT STUDY 55993 WIRE 0 EUROPE PILOT STUDY 56000 WIRE 0 EUROPE PILOT STUDY 56000 WIRE 0 EUROPE PILOT STUDY 55942 WIRE 0 NORTH AMERICA PILOT STUDY 56000 WIRE 0 NORTH AMERICA PILOT STUDY 56000 WIRE 0 EAST ASIA AND THE PACIFIC PILOT STUDY 55688 WIRE 0 EUROPE PILOT STUDY 56000 WIRE 0 NORTH AMERICA PILOT STUDY 56000 WIRE 0 NORTH AMERICA QUALITY IMPROVEMENT 10270 WIRE 0 EUROPE RESEARCH 151312 WIRE 0 NORTH AMERICA RESEARCH 45900 WIRE 0 EUROPE RESEARCH 140000 WIRE 0 EAST ASIA AND THE PACIFIC RESEARCH 139188 WIRE 0 MIDDLE EAST AND NORTH AFRICA RESEARCH 139294 WIRE 0 EUROPE RESEARCH 226891 WIRE 0 EAST ASIA AND THE PACIFIC RESEARCH 167535 WIRE 0 NORTH AMERICA RESEARCH 145740 WIRE 0 EUROPE RESEARCH 104770 WIRE 0 EUROPE RESEARCH 139583 WIRE 0 NORTH AMERICAN RESEARCH 139597 WIRE 0 EUROPE THERAPEUTICS DISCOVERY RESEARCH 463900 WIRE 0 EUROPE THERAPEUTICS DISCOVERY RESEARCH 221496 WIRE 0 NORTH AMERICA THERAPEUTICS DISCOVERY RESEARCH 101157 WIRE 0 EUROPE THERAPEUTICS DISCOVERY RESEARCH 319941 WIRE 0 35 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 AS WELL AS APPLICABLE PUBLICATIONS OF THE U.S. INTERNAL REVENUE SERVICE, INCLUDING BUT NOT LIMITED TO PUBLICATION 515: WITHHOLDING OF TAX ON NONRESIDENT ALIENS AND FOREIGN ENTITIES AND PUBLICATION 557: TAX-EXEMPT STATUS FOR YOUR ORGANIZATION. IN COMPLIANCE WITH THE BEST PRACTICES AND IRS PUBLICATIONS INTERPRETING APPLICABLE LAWS AND REGULATIONS, THE ORGANIZATION COLLECTS AND REVIEWS INFORMATION ABOUT THE PROSPECTIVE GRANTEES TO CONDUCT A VETTING PROCESS THAT WILL PROTECT CFF FUNDS FROM DIVERSION FOR TERRORISM, OTHER PROHIBITED ACTIVITIES UNDER APPLICABLE LAWS, OR THE FURTHERANCE OF PRIVATE INTERESTS. 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 REGULAR 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. X X X X X X 1 LAUTMAN MASKA NEILL & COMPANY 1730 RHODE ISLAND AVE NW WASHINGTON DC 20036 MAIL COUNSEL 0 12208341 176400 12031941 12208341 176400 12031941 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 ATLANTA WALK 3415053 3163524 251529 0 19651 66437 101244 13200 50997 SKI EVENT 2404882 717500 1687382 0 127727 900497 543790 115368 565 62669287 52270015 10399272 0 894677 5060144 2924007 374296 1146148 68489222 56151039 12338183 1042055 6027078 3569041 387496 1312513 12338183 0 106070 67014 1 0.85000 106070 67014 67014 39056 NH CO 0 LICENSING FOR THESE GAMING ACTIVITIES IN NH AND CO WAS NOT REQUIRED. 0 0 0 0.00000 1.00000 THE ORGANIZATION 4550 MONTGOMERY AVE SUITE 1100N BETHESDA MD 20814 0 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 2022. 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 RUTGERS THE STATE UNIVERSITY OF NEW JERSEY 65 BERGEN STREET NEWARK NJ 07103 462354111 IRC 115 3000 0 TRAINING UNIVERSITY OF GEORGIA RESEARCH FOUNDATION INC 310 EAST CAMPUS ROAD ATHENS GA 30602 581353149 501C(3) 3000 0 TRAINING UNIVERSITY OF SOUTH FLORIDA 4202 EAST FOWLER AVENUE TAMPA FL 336205800 593102112 IRC 115 3000 0 TRAINING UNIVERSITY OF SOUTH ALABAMA 307 UNIVERSITY BLVD MOBILE AL 36688 630477348 501C(3) 6000 0 TRAINING CODY DIERUF BENEFIT FOUNDATION PO BOX 7361 BOZEMAN MT 59771 204498266 501C(3) 8300 0 COMMUNITY IMPACT THE BONNELL FOUNDATION LIVING WITH CYSTIC FIBROSIS PO BOX 1215 ROYAL OAK MI MI 48068 800631159 501C(3) 9310 0 COMMUNITY IMPACT BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SYSTEM 21 N PARK STREET MADISON WI 537151218 396006492 501C(3) 9985 0 COMMUNITY IMPACT KID LOGISTICS 470 ARUNDEL DRIVE BRANDON MS 390478104 813019912 501C(3) 9994 0 COMMUNITY IMPACT THE BOARD OF TRUSTEES OF THE UNIVERSITY OF ILLINOIS 809 S MARSHFIELD AVENUE CHICAGO IL 606124305 376000511 501C(3) 9999 0 COMMUNITY IMPACT UNITED STATES ADULT CYSTIC FIBROSIS ASSOCIATION 9450 SOUTHWEST GEMINI DRIVE BEAVERTON OR 970087105 931036770 501C(3) 10000 0 COMMUNITY IMPACT THE DISTRACTORS 6922 GLIDDEN ST SAN DIEGO CA 92111 854369229 501C(3) 10000 0 COMMUNITY IMPACT NATIONAL ORGANIZATION OF AFRICAN AMERICANS WITH CYSTIC FIBROSIS 6001 SOUTHWIND DRIVE NORTH LITTLE ROCK AR 72118 852269576 501C(3) 10000 0 COMMUNITY IMPACT COLIE CREATIONS INC 3117 JOHN WILLIS ROAD NEW BERN NC 28562 872622612 501C(3) 10000 0 COMMUNITY IMPACT COACH-ED INC 1430 SUGARTOWN ROAD BERWYN PA 19312 453399942 501C(3) 10000 0 COMMUNITY IMPACT CLAIRE'S PLACE FOUNDATION INC 2110 ARTESIA BLVD B REDONDO BEACH CA 90278 452453459 501C(3) 10000 0 COMMUNITY IMPACT CYSTIC FIBROSIS LIFESTYLE FOUNDATION 936 SOUTHWEST 1ST AVENUE MIAMI FL 33130 571163801 501C(3) 10000 0 COMMUNITY IMPACT BOARD OF TRUSTEES OF MICHIGAN STATE UNIVERSITY 426 AUDITORIUM ROAD EAST LANSING MI 48824 386005984 501C(3) 12177 0 ADULT CARE CASE WESTERN RESERVE UNIVERSITY 10900 EUCLID AVENUE CLEVELAND OH 44106 341018992 501C(3) 12185 0 ADULT CARE REGENTS OF THE UNIVERSITY OF MICHIGAN 3003 SOUTH STATE STREET ANN ARBOR MI 481091274 386006309 501C(3) 12793 0 ADHERENCE THE RESEARCH FOUNDATION FOR STATE UNIVERSITY OF NEW YORK PO BOX 9 ALBANY NY 122010009 141368361 501C(3) 16200 0 ADHERENCE TRUSTEES OF INDIANA UNIVERSITY 509 EAST 3RD STREET BLOOMINGTON IN 474013654 356001673 501C(3) 17659 0 ADULT CARE UNIVERSITY HOSPITALS CLEVELAND MEDICAL CENTER 11100 EUCLID AVENUE CLEVELAND OH 44106 341567805 501C(3) 18085 0 CLINICAL RESEARCH STUDY THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK 615 WEST 131ST STREET NEW YORK NY 100277922 135598093 501C(3) 18914 0 ADULT CARE BREATHE BRAVELY INC 505 EAST SUNNYBROOK DRIVE SIOUX FALLS SD 571057138 475334258 501C(3) 19275 0 COMMUNITY IMPACT UPMC CHILDREN'S HOSPITAL OF PITTSBURGH 4401 PENN AVENUE PITTSBURGH PA 15224 250402510 501C(3) 19443 0 CF CARE CENTER SPECTRUM HEALTH FOUNDATION 100 MICHIGAN ST NE GRAND RAPIDS MI 49503 382752328 501C(3) 20061 0 ADULT CARE UNIVERSITY OF MASSACHUSETTS WORCESTER 55 NORTH LAKE AVENUE WORCESTER MA 01655 043167352 IRC 115 21315 0 ADULT CARE BILLINGS CLINIC FOUNDATION 2917 TENTH AVE NORTH BILLINGS MT 59101 810407289 501C(3) 21500 0 ADULT CARE OREGON HEALTH & SCIENCE UNIVERSITY 3181 SW SAM JACKSON PARK RD PORTLAND OR 97239 931176109 501C(3) 21619 0 ADULT CARE UNIVERSITY OF SOUTHERN CALIFORNIA 3720 S FLOWER STREET LOS ANGELES CA 900890701 951642394 501C(3) 22400 0 CLINICAL RESEARCH CENTER TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET PHILADELPHIA PA 191046284 231352685 501C(3) 23092 0 ADULT CARE THE RESEARCH FOUNDATION FOR STATE UNIVERSITY OF NEW YORK PO BOX 9 ALBANY NY 122010009 141368361 501C(3) 23191 0 ADULT CARE SEATTLE CHILDREN'S HOSPITAL 4800 SAND POINT WAY NE SEATTLE WA 98105 910564748 501C(3) 23199 0 ADULT CARE THE RECTOR AND VISITORS OF THE UNIVERSITY OF VIRGINIA 1001 NORTH EMMET STREET CHARLOTTESVILLE VA 229044195 546001796 501C(3) 23220 0 ADULT CARE UNIVERSITY OF WASHINGTON 4333 BROOKLYN AVE NE SEATTLE WA 981959472 916001537 IRC 115 23220 0 ADULT CARE UNIVERSITY OF PITTSBURGH PHYSICIANS CLINICAL TRAIL RECEIPTS MAIL STOP UST 015801 600 GRANT ST PITTSBURGH PA 152192739 232919472 501C(3) 24940 0 ADULT CARE SEATTLE CHILDREN'S HOSPITAL 4800 SAND POINT WAY NE SEATTLE WA 98105 910564748 501C(3) 27388 0 ADHERENCE BETH ISRAEL DEACONESS MEDICAL CENTER INC 330 BROOKLINE AVENUE BOSTON MA 022155491 042103881 501C(3) 28240 0 CLINICAL RESEARCH THE UNIVERSITY OF ARIZONA 845 NORTH PARK AVENUE TUCSON AZ 85721 742652689 IRC 115 28350 0 ADHERENCE BOARD OF REGENTS OF THE UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER PO BOX 26901 OKLAHOMA CITY OK 731260901 731563627 501C(3) 28745 0 ADULT CARE THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BVD DALLAS TX 753909020 756002868 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26901 OKLAHOMA CITY OK 731260901 731563627 501C(3) 416132 0 CF CARE CENTER UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH BIRMINGHAM AL 352940111 636005396 501C(3) 416401 0 CF CARE CENTER THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 753909020 756002868 170(B)(1)(A)(V) 420438 0 CLINICAL RESEARCH CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES 10889 WILSHIRE BOULEVARD SUITE 700 PO BOX 951406 LOS ANGELES CA 900951406 956006143 501C(3) 425599 0 CLINICAL CARE RESEARCH JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501C(3) 427917 0 RESEARCH DIGNITY HEALTH DBA ST JOSEPH'S HOSPITAL AND MEDICAL CENTER 350 W THOMAS ROAD PHOENIX AZ 85013 941196203 501C(3) 431020 0 CLINICAL CARE RESEARCH UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH BIRMINGHAM AL 352940111 636005396 501C(3) 434816 0 QUALITY IMPROVEMENT REGENTS OF THE UNIVERSITY OF MICHIGAN 3003 SOUTH STATE STREET ANN ARBOR MI 481091274 386006309 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PENN AVENUE PITTSBURGH PA 15224 251865744 501C(3) 476820 0 CF CARE CENTER THE UNIVERSITY OF ARIZONA 845 NORTH PARK AVENUE TUCSON AZ 85721 742652689 IRC 115 483659 0 CLINICAL RESEARCH STUDY CHILDREN'S HOSPITAL CORPORATION 300 LONGWOOD AVE BOSTON MA 02115 042774441 501C(3) 494940 0 CF CARE CENTER THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 432052664 316056230 501C(3) 500000 0 RESEARCH CENTER THE REGENTS OF THE UNIVERSITY OF COLORADO 1800 GRANT STREET DENVER CO 80203 846000555 501C(3) 504641 0 RESEARCH UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 275991350 566001393 501C(3) 507092 0 CLINICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES 10889 WILSHIRE BOULEVARD SUITE 700 PO BOX 951406 LOS ANGELES CA 900951406 956006143 501C(3) 508778 0 CLINICAL RESEARCH STUDY TRUSTEES OF INDIANA UNIVERSITY 509 EAST 3RD STREET BLOOMINGTON IN 474013654 356001673 501C(3) 509328 0 CLINICAL RESEARCH STUDY THE RESEARCH FOUNDATION FOR STATE UNIVERSITY OF NEW YORK PO BOX 9 ALBANY NY 122010009 141368361 501C(3) 509525 0 CF CARE CENTER THE GENERAL HOSPITAL CORPORATION 55 FRUIT STREET BOSTON MA 02114 042697983 501C(3) 511734 0 QUALITY IMPROVEMENT REGENTS OF THE UNIVERSITY OF MICHIGAN 3003 SOUTH STATE STREET ANN ARBOR MI 481091274 386006309 501C(3) 515724 0 CF CARE CENTER THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 753909020 756002868 170(B)(1)(A)(V) 518085 0 CF CARE CENTER REGENTS OF THE UNIVERSITY OF MINNESOTA 450 MCNAMARA ALUMNI CTR 200 OAK ST SE MINNEAPOLIS MN 554552070 416007513 501C(3) 529344 0 CF CARE CENTER YALE UNIVERSITY 150 MUNSON STREET PO BOX 208327 NEW HAVEN CT 065208327 060646973 501C(3) 534290 0 CLINICAL RESEARCH STUDY OREGON STATE UNIVERSITY PO BOX 1086 CORVALLIS OR 973391086 611730890 IRC 115 537911 0 THERAPEUTICS DISCOVERY RESEARCH UNIVERSITY OF UTAH 201 S PRESIDENTS CIRCLE SALT LAKE CITY UT 841120922 876000525 501C(3) 539770 0 CF CARE CENTER CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINCINNATI OH 452293039 310833936 501C(3) 542523 0 RESEARCH CENTER MASSACHUSETTS INSTITUTE OF TECHNOLOGY 77 MASSACHUSETTS AVENUE CAMBRIDGE MA 021394307 042103594 501C(3) 544279 0 THERAPEUTICS DISCOVERY RESEARCH UNIVERSITY OF WASHINGTON 4333 BROOKLYN AVE NE SEATTLE WA 981959472 916001537 IRC 115 550000 0 RESEARCH CENTER UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 275991350 566001393 501C(3) 550000 0 RESEARCH CENTER KAISER FOUNDATION RESEARCH INSTITUTE A DIVISION OF KAISER FOUNDATION HOSPI 1800 HARRISON STREET OAKLAND CA 94612 941105628 501C(3) 554339 0 CF CARE CENTER THE UNIVERSITY OF TEXAS AT AUSTIN 3925 WEST BRAKER LANE AUSTIN TX 787595316 746000203 501C(3) 557317 0 THERAPEUTICS DISCOVERY RESEARCH EMORY UNIVERSITY 1599 CLIFTON RD ATLANTA GA 30322 580566256 501C(3) 559060 0 CF CARE CENTER THE REGENTS OF THE UNIVERSITY OF COLORADO 1800 GRANT STREET DENVER CO 80203 846000555 501C(3) 579664 0 CLINICAL CARE RESEARCH REGENTS OF THE UNIVERSITY OF CALIFORNIA BERKELEY 1608 FOURTH STREET SUITE 201 BERKELEY CA 947201749 946002123 501C(3) 585312 0 THERAPEUTICS DISCOVERY RESEARCH TRUSTEES OF INDIANA UNIVERSITY 509 EAST 3RD STREET BLOOMINGTON IN 474013654 356001673 501C(3) 597413 0 CF CARE CENTER STATE UNIVERSITY OF IOWA 105 JESSUP HALL IOWA CITY IA 52242 426004813 501C(3) 600000 0 RESEARCH CENTER THE REGENTS OF THE UNIVERSITY OF COLORADO 1800 GRANT STREET DENVER CO 80203 846000555 501C(3) 603915 0 CLINICAL RESEARCH TRUSTEES OF DARTMOUTH COLLEGE 11 ROPE FERRY ROAD HANOVER NH 037551421 020222111 501C(3) 672000 0 RESEARCH UNIVERSITY OF PITTSBURGH 300 MURDOCH BUILDING PITTSBURGH PA 152603203 250965591 501C(3) 676664 0 RESEARCH CENTER NATIONAL JEWISH HEALTH 1400 JACKSON STREET DENVER CO 80206 742044647 501C(3) 700038 0 CLINICAL RESEARCH CENTER TRUSTEES OF INDIANA UNIVERSITY 509 EAST 3RD STREET BLOOMINGTON IN 474013654 356001673 501C(3) 700861 0 CLINICAL CARE RESEARCH UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH BIRMINGHAM AL 352940111 636005396 501C(3) 703473 0 CLINICAL RESEARCH CENTER CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINCINNATI OH 452293039 310833936 501C(3) 710356 0 CLINICAL RESEARCH TRUSTEES OF DARTMOUTH COLLEGE 11 ROPE FERRY ROAD HANOVER NH 037551421 020222111 501C(3) 720000 0 RESEARCH CENTER UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 275991350 566001393 501C(3) 720229 0 CF CARE CENTER THE REGENTS OF THE UNIVERSITY OF COLORADO 1800 GRANT STREET DENVER CO 80203 846000555 501C(3) 729908 0 CLINICAL RESEARCH CENTER UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 275991350 566001393 501C(3) 739417 0 CLINICAL RESEARCH STUDY UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH BIRMINGHAM AL 352940111 636005396 501C(3) 750000 0 RESEARCH CENTER UNIVERSITY OF PITTSBURGH 300 MURDOCH BUILDING PITTSBURGH PA 152603203 250965591 501C(3) 753754 0 RESEARCH THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON 7000 FANNIN STREET HOUSTON TX 77030 741761309 501C(3) 786172 0 THERAPEUTICS DISCOVERY RESEARCH THE OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 432101016 316025986 IRC 115 801901 0 THERAPEUTICS DISCOVERY RESEARCH UNIVERSITY OF PITTSBURGH 300 MURDOCH BUILDING PITTSBURGH PA 152603203 250965591 501C(3) 806184 0 CLINICAL CARE RESEARCH UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 275991350 566001393 501C(3) 814975 0 THERAPEUTICS DISCOVERY RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO 490 ILLINOIS STREET 4TH FLOOR SAN FRANCISCO CA 94143 946036493 501C(3) 833986 0 RESEARCH PRESIDENT AND FELLOWS OF HARVARD COLLEGE 1033 MASSACHUSETTS AVENUE CAMBRIDGE MA 02138 042103580 501C(3) 839989 0 CLINICAL RESEARCH STUDY GEORGIA TECH RESEARCH CORPORATION 926 DALNEY STREET NW ATLANTA GA 30332 580603146 501C(3) 868000 0 CLINICAL RESEARCH STUDY UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH BIRMINGHAM AL 352940111 636005396 501C(3) 891775 0 THERAPEUTICS DISCOVERY RESEARCH DUKE UNIVERSITY 324 BLACKWELL ST DURHAM NC 27701 560532129 501C(3) 920072 0 CLINICAL CARE RESEARCH UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH BIRMINGHAM AL 352940111 636005396 501C(3) 945824 0 CLINICAL RESEARCH STUDY UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 275991350 566001393 501C(3) 959498 0 CLINICAL RESEARCH CENTER CHILDREN'S HOSPITAL CORPORATION 300 LONGWOOD AVE BOSTON MA 02115 042774441 501C(3) 990102 0 ADHERENCE EMORY UNIVERSITY 1599 CLIFTON RD ATLANTA GA 30322 580566256 501C(3) 992455 0 CLINICAL RESEARCH STUDY UNIVERSITY OF WASHINGTON 4333 BROOKLYN AVE NE SEATTLE WA 981959472 916001537 IRC 115 1028267 0 CLINICAL RESEARCH STUDY THE GENERAL HOSPITAL CORPORATION 55 FRUIT STREET BOSTON MA 02114 042697983 501C(3) 1036169 0 CLINICAL RESEARCH STUDY UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 2ND AVENUE SOUTH BIRMINGHAM AL 352940111 636005396 501C(3) 1050917 0 RESEARCH EMORY UNIVERSITY 1599 CLIFTON RD ATLANTA GA 30322 580566256 501C(3) 1116817 0 QUALITY IMPROVEMENT THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON 7000 FANNIN STREET HOUSTON TX 77030 741761309 501C(3) 1208505 0 RESEARCH THE CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVENUE CLEVELAND OH 44131 340714585 501C(3) 1213858 0 CLINICAL CARE RESEARCH REGENTS OF THE UNIVERSITY OF MICHIGAN 3003 SOUTH STATE STREET ANN ARBOR MI 481091274 386006309 501C(3) 1240650 0 CLINICAL CARE RESEARCH ST LOUIS UNIVERSITY 221 NORTH GRAND BLVD ST LOUIS MO 63103 430654872 501C(3) 1259760 0 CLINICAL RESEARCH STUDY JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501C(3) 1266451 0 ADHERENCE UNIVERSITY OF WASHINGTON 4333 BROOKLYN AVE NE SEATTLE WA 981959472 916001537 IRC 115 1304011 0 CLINICAL RESEARCH NATIONAL JEWISH HEALTH 1400 JACKSON STREET DENVER CO 80206 742044647 501C(3) 1392651 0 CLINICAL RESEARCH STUDY JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501C(3) 1456376 0 CLINICAL CARE RESEARCH CASE WESTERN RESERVE UNIVERSITY 10900 EUCLID AVENUE CLEVELAND OH 44106 341018992 501C(3) 1571922 0 RESEARCH CENTER CASE WESTERN RESERVE UNIVERSITY 10900 EUCLID AVENUE CLEVELAND OH 44106 341018992 501C(3) 2023661 0 RESEARCH UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 275991350 566001393 501C(3) 2333367 0 RESEARCH CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINCINNATI OH 452293039 310833936 501C(3) 2621214 0 CLINICAL CARE RESEARCH UNIVERSITY SYSTEM OF NEW HAMPSHIRE 51 COLLEGE ROAD DURHAM NH 03824 026000937 501C(3) 2777411 0 QUALITY IMPROVEMENT JAEB CENTER FOR HEALTH RESEARCH FOUNDATION INC 15310 AMBERLY DRIVE SUITE 350 TAMPA FL 33647 593187624 501C(3) 3232069 0 CLINICAL RESEARCH STUDY STATE UNIVERSITY OF IOWA 105 JESSUP HALL IOWA CITY IA 52242 426004813 501C(3) 3706113 0 THERAPEUTICS DISCOVERY RESEARCH SEATTLE CHILDREN'S HOSPITAL 4800 SAND POINT WAY NE SEATTLE WA 98105 910564748 501C(3) 5555719 0 CLINICAL RESEARCH HEALTHWELL FOUNDATION PO BOX 4133 GAITHERSBURG MD 208854122 200413676 501C(3) 5600000 0 PATIENT ASSISTANCE SEATTLE CHILDREN'S HOSPITAL 4800 SAND POINT WAY NE SEATTLE WA 98105 910564748 501C(3) 6399823 0 CLINICAL RESEARCH STUDY SEATTLE CHILDREN'S HOSPITAL 4800 SAND POINT WAY NE SEATTLE WA 98105 910564748 501C(3) 7610499 0 CLINICAL RESEARCH CENTER 230 9 FELLOWSHIPS 56 480434 COMMUNITY IMPACT 3 29997 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 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 695940 0 1760233 0 7674 0 193597 0 37338 0 2694782 0 446250 0 MICHAEL P BOYLE MD PRESIDENT & CEO 647211 0 297943 0 5102 0 350116 0 49410 0 1349782 0 159687 0 EARL LEE MANAGING DIRECTOR, INVESTMENTS 439904 0 581475 0 1634 0 217912 0 16450 0 1257375 0 126945 0 ERIC KOEHRSEN MANAGING DIRECTOR, INVESTMENTS 407807 0 512092 0 1135 0 199727 0 48510 0 1169271 0 106470 0 BRUCE MARSHALL MD EVP & CHIEF MEDICAL OFFICER 529980 0 154312 0 7913 0 104713 0 0 0 796918 0 82365 0 JOHN P CLANCY MD SVP, CLINICAL RESEARCH 449033 0 97886 0 4417 0 113030 0 41582 0 705948 0 32768 0 MARY DWIGHT CHIEF POLICY & ADVOCACY OFFICER 353157 0 121692 0 68163 0 82515 0 47394 0 672921 0 0 0 MARYBETH MCMAHON CHIEF OF STAFF 318947 0 138066 0 95551 0 75625 0 17154 0 645343 0 0 0 ANTHONY DURMOWICZ MD VP, CLINICAL DEVELOPMENT 454590 0 101908 0 17525 0 62272 0 2400 0 638695 0 38627 0 IRENA BARISIC EVP, CFAO, ASST. SEC. & ASST. TRSR. 513800 0 43000 0 1140 0 69210 0 2171 0 629321 0 0 0 WILLIAM SKACH MD EVP & CHIEF SCIENTIFIC OFFICER 279431 0 172324 0 4080 0 30720 0 30698 0 517253 0 79221 0 PRESTON CAMPBELL MD FORMER CEO & STRATEGIC ADVISOR 245604 0 144735 0 3604 0 30720 0 31448 0 456111 0 144735 0 MICHAEL B CAVADEL SVP, CHIEF LEGAL OFFICER, & SEC. 193704 0 0 0 376 0 16543 0 11817 0 222440 0 0 0 CHRIS GEGELYS FORMER CHIEF LEGAL OFFICER 7918 0 148798 0 19746 0 0 0 0 0 176462 0 0 0 MARC S GINSKY FORMER COO 0 0 0 0 160000 0 0 0 0 0 160000 0 0 0 VERA H TWIGG FORMER EVP, CFO 0 0 103286 0 0 0 0 0 0 0 103286 0 0 0 PART I, LINE 4A: AS PART OF A SEVERANCE AGREEMENT, THE EXECUTIVE RECEIVED THE BELOW INDICATED AMOUNT IN 2022. 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. NAME: MARC S. GINSKY AMOUNT: $160,000 PART I, LINE 4B: THE TWO EXECUTIVES LISTED BELOW 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. INFORMATION REGARDING THE AMOUNT OF PAYMENTS MADE BY THE PLAN DURING THE REPORTING YEAR IS PROVIDED BELOW. NAME: JOHN C. MAHLER JR AMOUNT: $100,000 NAME: MICHAEL P. BOYLE, M.D. AMOUNT: $100,000 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. X 31 44951 NET CASH RECEIPTS X 94 1033292 NET CASH RECEIPTS X 1 2734708 NET CASH RECEIPTS X TANGIBLE AUCTION ITEMS 9845 6080579 NET CASH RECEIPTS 1 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 (AND RESEARCH) PROGRAMS - THE CYSTIC FIBROSIS FOUNDATION IS THE WORLD'S LEADER IN THE SEARCH FOR A CURE FOR CYSTIC FIBROSIS, A PROGRESSIVE, GENETIC DISEASE THAT AFFECTS CLOSE TO 40,000 PEOPLE IN THE UNITED STATES, AND MORE THAN 100,000 WORLDWIDE, WHICH INCLUDES PEOPLE FROM EVERY RACIAL AND ETHNIC GROUP. THE CF FOUNDATION HAS AND CONTINUES TO FUND HUNDREDS OF MILLIONS OF DOLLARS IN RESEARCH TO HELP DISCOVER/DEVELOP EFFECTIVE CF THERAPIES AND HIGHLY SPECIALIZED CARE. IN 2022, THE CF FOUNDATION INVESTED $265 MILLION INTO RESEARCH AND CARE. DUE IN PART TO THE FOUNDATION'S EFFORTS IN RESEARCH, CARE, AND TREATMENTS, THE LIFE EXPECTANCY OF PEOPLE WITH CF HAS MORE THAN DOUBLED IN THE LAST 30 YEARS. 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 91 FOUNDATION-ACCREDITED CARE CENTERS. AS OF DECEMBER 2022,THE CF DRUG DEVELOPMENT PIPELINE HAD 42 THERAPIES IN DEVELOPMENT INCLUDING TREATMENTS THAT ADDRESS COMPLICATIONS, LIKE INFECTIONS, AND GENETIC THERAPIES THAT COULD ONE DAY LEAD TO A CURE FOR ALL PEOPLE WITH CYSTIC FIBROSIS, INCLUDING THOSE WITH RARE AND NONSENSE DISEASE-CAUSING MUTATIONS. 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 2022, THE FOUNDATION PROVIDED MORE THAN $46 MILLION OF SUPPORT FOR CARE CENTERS AND CLINICIANS AND CONTINUES TO DEVELOP CARE GUIDELINES FOR CARE TEAMS TO PROVIDE THE HIGHLY SPECIALIZED CARE NEEDED TO LIVE WITH THE DISEASE. THE FOUNDATION ALSO MANAGES A PATIENT REGISTRY OF PEOPLE WITH CF, COLLECTING INFORMATION ON THE HEALTH STATUS OF APPROXIMATELY 32,100 PEOPLE WITH CF, INCUDING 779 NEWLY DIAGNOSED INDIVIDUALS, 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. THE FOUNDATION DOES THIS THROUGH SUPPORTING SPECIALIZED QUALITY CF CARE, PROVIDING INFORMATION AND TOOLS TO HELP PEOPLE DIRECT THEIR OWN CARE, AND DEVELOPING PROGRAMS TO HELP PEOPLE WITH CF AND THEIR LOVED ONES CONNECT WITH OTHERS IN THE CF COMMUNITY SO THEY CAN LEARN FROM AND CELEBRATE EACH OTHER. LACK OF ADEQUATE INSURANCE COVERAGE FOR CF THERAPIES HAS BEEN A CONSISTENT CONCERN FOR THOSE LIVING WITH THE DISEASE AND THEIR FAMILIES. CF FOUNDATION 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 2022, SKILLED COMPASS CASE MANAGERS ANSWERED MORE THAN 8,600 CALLS 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. BY CONNECTING PEOPLE WITH CF TO RESOURCES TO HELP THEM PAY BILLS OR OTHER SERVICES, THE CF FOUNDATION SAVED CLIENTS MORE THAN $1.3 MILLION. THE FOUNDATION HELD MORE THAN 1,000 NATIONAL AND CHAPTER EVENTS IN 2022 FOR PEOPLE WITH CF AND THEIR FAMILY MEMBERS. VIRTUAL EVENTS, INCLUDING BREATHECON, RESEARCHCON, AND NEXTBREATH, WERE 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 2022, THERE WERE 185 PUBLICATIONS AND 48 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 2022, OVER 1,7980,000 UNIQUE VISITORS CAME TO THE CF FOUNDATION'S WEBSITE. THE FOUNDATION PUBLISHED 65 NEW CONTENT PAGES, MADE 284 CONTENT UPDATES, AND PUBLISHED 90 CF COMMUNITY BLOG POSTS. FORM 990, PART VI, LINE 4: THE CF FOUNDATION UPDATED ITS BYLAWS IN 2022 TO INCLUDE AN ADDITIONAL NON-VOTING TRUSTEE POSITION. 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 IT BEING FILED, WITH TIME FOR REVIEW AND COMMENT. 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. 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 FOR BOARD MEMBERS AND OFFICERS 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 2022 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 CF THE OPPORTUNITY TO LEAD LONG, FULFILLING 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, CHIEF FINANCIAL AND ADMINISTRATIVE OFFICER CHIEF INVESTMENT OFFICER SENIOR VP, CLINICAL RESEARCH EXECUTIVE VICE PRESIDENT & CHIEF SCIENTIFIC OFFICER EXECUTIVE VICE PRESIDENT & CHIEF MEDICAL OFFICER THE PROCESS WAS LAST UNDERTAKEN IN 2021 WITH RESPECT TO COMPENSATION TO BE PAID IN 2022 TO 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. 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. INFORMATION ON HOW TO OBTAIN THE GOVERNING DOCUMENTS WAS AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG, DURING 2022. THE BOARD AND OFFICER CONFLICT OF INTEREST POLICY AND THE AUDITED FINANCIAL STATEMENTS WERE AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG, DURING 2022. 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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