2017-08-22T14:53:50-05:00 2016-12-31 KPMG LLP 1676 INTERNATIONAL DRIVE McLean VA 22102 990 2016-01-01 131930701 CYSTIC FIBROSIS FOUNDATION % PRESTON W CAMPBELL MD CYST 3019514422 4550 MONTGOMERY AVENUE Suite 1100 N BETHESDA MD 20814 PRESTON CAMPBELL PRESIDENT & CEO 3019514422 2017-08-21 true JG WHITE P01498698 7032868000 2017-08-17 167.68.102.5 54028020172345000001 2017-08-22 P 3E895241A54B985E72EC2743C754C5778BD37633 6F321923765C04EB30ECA77512AF51A673583565 2016 2021-01-29 14:40:06Z X PRESTON W CAMPBELL MD 4550 MONTGOMERY AVENUE BETHESDA MD 20814 1123791107 false X WWW.CFF.ORG X 1955 DE THE MISSION IS TO CURE CYSTIC FIBROSIS AND TO PROVIDE ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES. 17 16 731 250000 -545558 -601675 95908297 117148751 2216198 2246282 41305390 64555425 9029211 8578517 148459096 192528975 132612012 198127696 0 0 32239198 58875323 192000 133446 22784588 27943551 42514066 192986761 299650531 -44527665 -107121556 3803485303 3919394927 124060775 187239749 3679424528 3732155178 X THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION IS TO CURE CYSTIC FIBROSIS AND TO PROVIDE ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES BY FUNDING RESEARCH AND DRUG DEVELOPMENT, PROMOTING INDIVIDUALIZED TREATMENT, AND ENSURING ACCESS TO HIGH QUALITY, SPECIALIZED CARE. A LIFE-SHORTENING GENETIC DISEASE, CF AFFECTS THE LUNGS AND DIGESTIVE SYSTEMS OF MORE THAN 30,000 PEOPLE IN THE U.S. CURRENTLY, THERE IS NO CURE. false false 224800391 196250280 2565103 MEDICAL PROGRAMS SINCE 1955, THE CYSTIC FIBROSIS FOUNDATION HAS BEEN DEDICATED TO CURING AND CONTROLLING CYSTIC FIBROSIS (CF). THE CYSTIC FIBROSIS FOUNDATION IS THE WORLDS LEADER IN THE SEARCH FOR A CURE FOR CYSTIC FIBROSIS, A LIFE-THREATENING GENETIC DISEASE THAT AFFECTS MORE THAN 30,000 PEOPLE IN THE UNITED STATES, AND 70,000 WORLDWIDE. 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 FUNDS AND ACCREDITS A NATIONWIDE NETWORK OF 120 CARE CENTERS. THE CARE CENTER 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. BREAKTHROUGH TREATMENTS HAVE ADDED YEARS TO THE LIVES OF PEOPLE WITH CYSTIC FIBROSIS. TODAY THE MEDIAN SURVIVAL AGE IS OVER 40. THIS IS A DRAMATIC IMPROVEMENT FROM THE 1950S, WHEN A CHILD WITH CF RARELY LIVED LONG ENOUGH TO ATTEND ELEMENTARY SCHOOL. THE FOUNDATION PROVIDES MUCH-NEEDED SUPPORT FOR PATIENTS AND THEIR FAMILIES AS THEY MANAGE THE DIFFICULT CONSEQUENCES OF THE DISEASE FROM SUPPORTING SPECIALIZED, QUALITY CF CARE TO PROVIDING INFORMATION AND SUPPORT TO HELP PEOPLE WITH CF ACCESS THAT CARE. THE FOUNDATIONS PATIENT REGISTRY COLLECTS INFORMATION ON THE HEALTH STATUS OF MORE THAN 29,400 PEOPLE WITH CF, PROVIDING CAREGIVERS AND RESEARCHERS CRITICAL INFORMATION TO HELP 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 CF ADVOCACY GROUPS. MEDICAL PROGRAMS CONSIST OF APPROXIMATELY 740 GRANTS AND OTHER COSTS TO SUPPORT SCIENTIFIC STUDIES/INVESTIGATIONS AND CYSTIC FIBROSIS CENTERS. APPROXIMATELY 422 GRANTS TOTALING $31.7 MILLION WERE AWARDED TO CYSTIC FIBROSIS CARE CENTERS SERVING APPROXIMATELY 29,400 PATIENTS. 14539590 PUBLIC AND PROFESSIONAL INFORMATION AND EDUCATION TO BROADEN ITS REACH AND TO SUPPORT ITS MISSION, THE CF FOUNDATION HAS PROGRAMS DESIGNED TO IMPROVE THE KNOWLEDGE OF PEOPLE WITH CF AND THEIR FAMILIES, MEDICAL PROFESSIONALS AND THE GENERAL PUBLIC REGARDING THE DISEASE. IN 2016, THERE WERE MORE THAN FIVE PUBLICATIONS AND 17 VIDEOS/SERIES PRODUCED AND MADE AVAILABLE FOR PEOPLE WITH CF, FAMILIES, MEDICAL PROFESSIONALS, AND THE GENERAL PUBLIC. YEAR-ROUND, MEETINGS AND CONFERENCES PROVIDE UPDATES FOR CF RESEARCHERS, PHYSICIANS AND ALLIED HEALTH PROFESSIONALS AND OPPORTUNITIES FOR COLLABORATION ON FUTURE CF RESEARCH PROJECTS AND TREATMENT/CARE EFFORTS. IN 2016, OVER 1,944,928 UNIQUE VISITORS CAME TO THE CF FOUNDATIONS WEBSITE. NEW CONTENT ON CFF.ORG IN 2016 INCLUDED THE LAUNCH OF SEVEN NEW SECTIONS AND 158 BLOG POSTS. 15317469 1877416 COMMUNITY SERVICES THE CYSTIC FIBROSIS FOUNDATION PROVIDES YEAR-ROUND EFFORTS TO EDUCATE, INFORM, AND EMPOWER INDIVIDUALS WITH CF AND THEIR FAMILIES ABOUT THE LATEST DEVELOPMENTS IN TREATMENT AND CARE. THE PROGRAMS ARE DESIGNED TO HELP THE GENERAL PUBLIC IN THE DETECTION OF THE DISEASE BY PROVIDING A REFERRAL SERVICE AND HANDLING INQUIRIES CONCERNING CF. APPROXIMATELY 29,400 PEOPLE WITH CF WERE SERVED IN 2016, INCLUDING APPROXIMATELY 890 INDIVIDUALS WHO WERE NEWLY DIAGNOSED. LACK OF ADEQUATE INSURANCE COVERAGE FOR CF MEDICATIONS HAS BEEN A CONSISTENT CONCERN FOR THOSE LIVING WITH THE DISEASE AND THEIR FAMILIES. COMPASS IS A HIGHLY PERSONALIZED SERVICE TAILORED TO AN INDIVIDUALS CIRCUMSTANCES RELATED TO COMPLEX INSURANCE, FINANCIAL, LEGAL, AND OTHER ISSUES THAT CAN PREVENT ACCESS TO MUCH-NEEDED CF THERAPIES AND CARE. IN 2016, SKILLED CASE MANAGERS HELPED MORE THAN 3,800 PEOPLE WITH CF AND THEIR FAMILIES UNDERSTAND AND MAXIMIZE THEIR INSURANCE COVERAGE AND BENEFITS. CASE MANAGERS ALSO ASSISTED MANY OTHERS 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 2016, NEARLY 200 ADULTS JOINED BREATHECON, THE FIRST VIRTUAL CONFERENCE BY AND FOR PEOPLE WITH CF. PARTICIPANTS HEARD KEYNOTE AND PANEL PRESENTATIONS AND PARTICIPATED IN SMALL GROUP DISCUSSIONS FOCUSED ON CRUCIAL TOPICS INCLUDING FERTILITY, CF IN THE WORKPLACE, AND PARENTHOOD. 254657450 true true false true false false false false false false true true false false true true false true false false true true false true true true false true true true false false false false false false false false true false false false true true true true false false true 1370 12 true 731 true true true false false false false true true true 1 false false true false X 17 16 false false true false false false false true true false true true true true true true true true true true false AL AK AR CA CT FL GA HI IL IN KS KY MD MA MI MN MS NH NJ NM NY OK OR PA RI SC TN UT VA WA WV WI X X PRESTON W CAMPBELL MD 3019514422 4550 MONTGOMERY AVE STE 1100 N BETHESDA MD 20814 X RICHARD L DANDURAND TRUSTEE 3.0 0.0 X 0 0 0 LOUIS DEFALCO VICE CHAIR 5.0 0.0 X 0 0 0 RICHARD J GRAY ESQ VICE CHAIR 5.0 0.0 X 0 0 0 CAROLE B GRIEGO MD TRUSTEE 3.0 3.0 X 0 0 0 SUSAN L HOOK TRUSTEE 3.0 0.0 X 0 0 0 CATHERINE C MCLOUD CHAIR 8.0 3.0 X 0 0 0 CHAD T MOORE TRUSTEE 3.0 0.0 X 0 0 0 DAVID A MOUNT TREASURER 5.0 0.0 X 0 0 0 ROBERT H NIEHAUS VICE CHAIR 5.0 0.0 X 0 0 0 ERIC OLSON PHD TRUSTEE 3.0 3.0 X 0 0 0 GARY B SABIN TRUSTEE 3.0 0.0 X 0 0 0 STEVEN SHAK MD TRUSTEE 3.0 3.0 X 0 0 0 CHARLES J THAYER TRUSTEE 3.0 0.0 X 0 0 0 THEODORE J TORPHY PHD TRUSTEE 3.0 5.0 X 0 0 0 AMY S WEINBERG TRUSTEE 3.0 0.0 X 0 0 0 PAUL W WHETSELL EXECUTIVE VICE CHAIR 5.0 0.0 X 0 0 0 KC BRYAN WHITE TRUSTEE 3.0 0.0 X 0 0 0 PRESTON CAMPBELL MD PRESIDENT & CEO 37.0 18.0 X X 616640 304574 255951 MARC S GINSKY EXECUTIVE VP, COO & SECRETARY 50.0 5.0 X 305540 0 149642 VERA H TWIGG EXECUTIVE VP & CFO 50.0 5.0 X 465131 0 103024 JOHN MAHLER MD CHIEF INVESTMENT OFFICER 55.0 0.0 X 830745 0 109987 BRUCE MARSHALL MD SENIOR VP, CLINICAL AFFAIRS 41.0 14.0 X 386312 95540 32117 WILLIAM SKACH MD SENIOR VP, RESEARCH AFFAIRS 8.0 47.0 X 58192 329757 54167 DRUCY S BOROWITZ MD SVP, COMMUNITY PARTNERSHIPS 55.0 0.0 X 320867 0 7550 TIMOTHY A WAIRE JR CHIEF INFORMATION OFFICER 55.0 0.0 X 308006 0 62471 LEAH BLOOM PHD CHIEF OF STRATEGY 55.0 0.0 X 305677 0 48998 WILLIAM BLANTON DIRECTOR OF INVESTMENTS 55.0 0.0 X 309472 0 28410 MARYBETH MCMAHON PHD CHIEF OF STAFF 55.0 0.0 X 294073 0 51095 ROBERT J BEALL PHD FORMER CEO&CURRENT CONSULTANT 10.0 0.0 X 518038 126109 565 C RICHARD MATTINGLY FORMER COO 0.0 0.0 X 135951 0 7251 4854644 855980 911228 107 true true false GARDNER RUSSO GARDNER LLC 223 E CHESTNUT STREET LANCASTER PA 17602 INVESTMENT MGMT 1509059 CELERITY IT LLC 8401 GREENSBORO DR SUITE 500 MCLEAN VA 22102 SOFTWARE DEV/MAINT 1378958 SUFIAN PASSAMANO 712 MAIN STREET SUITE 2130 HOUSTON TX 77002 PATIENT ASSISTANCE 1368250 BARES CAPITAL MANAGEMENT INC 12600 HILL COUNTRY BLVD SUITE R-23 AUSTIN TX 78738 INVESTMENT MGMT 1152160 MIND OVER MACHINES 10451 MILL RUN CIRCLE SUITE 900 OWINGS MILLS MD 21117 SOFTWARE DEV/MAINT 1111028 85 934247 86167903 30046601 11538445 117148751 SCIENTIFIC CONFERENCE 611600 2246282 2246282 2246282 56600061 -545558 57145619 0 8038700 8038700 0 0 0 925377731 917343148 79219 8034583 -79219 7955364 7955364 13706145 86167903 13706145 229051 133620 95431 95431 0 0 0 LIST RENTAL 533110 125565 125565 REFUNDED OR CANCELLED GRANTS 900099 318821 318821 444386 192528975 2565103 -545558 73360679 196781906 196781906 137575 137575 1208215 1208215 0 3248161 1749888 609345 888928 661805 477387 75002 109416 44176990 23799550 8287473 12089967 2167010 1167437 406525 593048 5119719 2758156 960444 1401119 3501638 1841938 601641 1058059 0 626111 515729 108284 2098 344410 344410 574720 574720 133446 133446 7854093 7854093 4277751 3676276 270820 330655 12891 5543 1547 5801 3765353 2113695 370439 1281219 7792091 5752940 629855 1409296 0 3914949 2170919 524305 1219725 1779302 1233340 168781 377181 0 5097663 4478348 135180 484135 0 0 1346014 851020 159472 335522 555857 406732 104402 44723 MEDICAL QUALITY IMPROVEMENT 1282277 1282277 CARE CENTER SUPPORT 946282 946282 OTHER EXPENSES 2344302 727577 596475 1020250 299650531 254657450 22208493 22784588 X 1983714 372541 1611173 X 0 98774 284143149 94935899 10867532 7734842 11119153 6655865 0 0 0 0 0 0 212895 272744 956650 1819362 10274228 5445822 3152602 4828406 1769524290 2266485881 1716447700 1529304556 0 0 0 0 7061332 7258598 3803485303 3919394927 18195708 20050844 44046759 72415061 3422898 4358270 0 0 0 0 0 0 0 0 0 0 58395410 90415574 124060775 187239749 X 3664492149 3720457947 11255303 7954458 3677076 3742773 3679424528 3732155178 3803485303 3919394927 -107121556 159852206 X false true X true false X 219524901 305963877 3312085535 122210533 117148751 4076933597 0 0 219524901 305963877 3312085535 122210533 117148751 4076933597 0 4076933597 14145772 17054431 54160127 75041033 64638761 225040124 0 14550167 14927254 15655168 16333174 14060761 75526524 4377500245 39779656 0.93134 0.94740 X SCHEDULE A, PART II - OTHER INCOME 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 INVESTIGATE RESULTS WITH ONE ANOTHER. FEES FOR ATTENDANCE AT THIS CONFERENCE ARE REPORTED ON LINE 12. Schedule A, Part II PRIOR TO 2016, A SEPARATE GROUP FORM 990 HAS BEEN FILED TO REPORT THE ACTIVITIES OF THE FOUNDATION'S CHAPTER OFFICES. BECAUSE THESE OFFICES WERE NOT SEPARATE LEGAL ENTITIES, THE FOUNDATION TERMINATED ITS GROUP EXEMPTION RULING EFFECTIVE BEGINNING JANUARY 1, 2016. AS A RESULT, THE 2012-2015 INCOME REPORTED ON SCHEDULE A INCLUDES INCOME THAT WAS PREVIOUSLY REPORTED ON SCHEDULE A OF THE GROUP FORM 990. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true true false true 54000 true 85785 false true 1163453 false false 1303238 false LOBBYING ACTIVITY THE CYSTIC FIBROSIS FOUNDATION IS FOCUSED ON CURING CYSTIC FIBROSIS AND ENSURING ALL PEOPLE WITH THE DISEASE HAVE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE 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, DEVELOP WEB POSTS AND PUBLICATIONS TO REGULARLY UPDATE MEMBERS OF THE CYSTIC FIBROSIS COMMUNITY OF RELEVANT LEGISLATION AND ENCOURAGE INDIVIDUALS TO TAKE ACTION, AND COMMUNICATE REGULARLY WITH FEDERAL LEGISLATORS AND AGENCIES. 1714670 918056 796614 8559558 4527766 4031792 4828406 FIXED INCOME INDEX COMMINGLED 124856726 F PUBLIC EQUITY COMMINGLED 1023485288 F OTHER PUBLIC EQUITY BASED 58752003 F HEDGED STRATEGIES 241362101 F PVT EQTY & OTHR ILLIQUID FUNDS 77105665 F PERPETUAL TRUSTS 3742773 F 1529304556 0 INTERCOMPANY PAYABLE 90415574 90415574 X SCHEDULE D, PART X FIN 48 FOOTNOTE THE FOUNDATION, CFFT, AND CFPAF ARE NOT-FOR-PROFIT VOLUNTARY HEALTH ORGANIZATIONS EXEMPT FROM FEDERAL INCOME TAXES UNDER 501(C)(3) OF THE INTERNAL REVENUE CODE (THE CODE) AND FROM STATE TAXES AND HAVE BEEN CLASSIFIED AS ORGANIZATIONS THAT ARE NOT PRIVATE FOUNDATIONS UNDER SECTION 509(A) OF THE CODE. THE FOUNDATION DOES NOT HAVE ANY UNRELATED BUSINESS INCOME TAX LIABILITY AS OF DECEMBER 31, 2016 AND 2015. 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. true North America Grantmaking NONE 165218 Europe (Including Iceland and Greenland) Grantmaking NONE 751619 East Asia and the Pacific Grantmaking NONE 161178 Middle East and North Africa Grantmaking NONE 130200 Central America and the Caribbean Investments 483395000 East Asia and the Pacific Investments 2310000 Europe (Including Iceland and Greenland) Investments 123036000 North America Investments 4744000 614693215 614693215 North America PILOT STUDY 107978 CHECK North America PILOT STUDY 54000 CHECK Europe (Including Iceland and Greenland) RESEARCH 108000 WIRE Europe (Including Iceland and Greenland) RESEARCH 108000 WIRE Europe (Including Iceland and Greenland) RESEARCH 107939 WIRE Europe (Including Iceland and Greenland) RESEARCH 108000 WIRE Europe (Including Iceland and Greenland) RESEARCH 108000 WIRE Europe (Including Iceland and Greenland) RESEARCH 108000 WIRE Europe (Including Iceland and Greenland) PILOT STUDY 49680 WIRE Europe (Including Iceland and Greenland) PILOT STUDY 54000 WIRE East Asia and the Pacific RESEARCH 107146 WIRE East Asia and the Pacific PILOT STUDY 52532 WIRE Middle East and North Africa RESEARCH 108000 WIRE Middle East and North Africa ADULT CARE 22200 WIRE 14 true true true true true false 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. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. THE CF FOUNDATION'S INTERNAL AUDITORS CONDUCT AUDITS ON SAMPLES OF GRANT EXPENDITURE REPORTS BY EXAMINING SUPPORTING RECORDS FROM THE SPONSORED INSTITUTIONS. THE GRANTS TO THE MIDDLE EAST/NORTH AFRICA REGION WERE MADE TO WEIZMANN INSTITUTE OF SCIENCE AND HADASSAH HEBREW UNIVERSITY MEDICAL CENTER IN ISRAEL. FOREIGN FORMS THE ACTIVITIES REFERENCED IN SCHEDULE F, PART IV ARE LIMITED TO CERTAIN OF THE FOUNDATION'S INVESTMENTS. X X X X X X true LAUTMAN MASKA NEILL CO MAIL COUNSEL false 4352594 104000 4248594 TURNKEY PROMOTIONS FUND COUNSEL false 29446 4352594 133446 4248594 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 SKI 2249457 904274 1345183 512314 296675 1500 534693 WALK 2133119 2083934 49185 11706 15905 250 21323 985 95491472 83179695 12311777 17766 923778 2594323 3685780 366487 4723645 99874048 86167903 13706145 17766 923778 3118343 3998360 368237 5279661 13706145 229051 500 131880 1240 false 229051 500 131880 1240 133620 95431 AL AZ CA DC FL GA IL KS KY LA MD MA MI MN MO NV NH NY NC OH OK PA TX VA WI true false false false 1.00000 THE ORGANIZATION 4550 MONTGOMERY AVE SUITE 1100N BETHESDA MD 20814 false false PROFESSIONAL FUNDRAISING SERVICES SCHEDULE G, PART I, LINE 2B CFF HAD A WRITTEN CONTRACT WITH LAUTMAN MASKA NEILL & COMPANY TO CONSULT ON ITS DIRECT MARKETING EFFORTS, STARTING IN JUNE 2016. THE EXPENSE FOR THE PROJECT IS $16,000 PER MONTH OR $104,000 FOR THE PARTIAL 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 AND A ONE-TIME DATA AUDIT IN 2016. LAUTMAN MASKA NEILL & COMPANY DOES NOT COLLECT ANY FUNDS ON BEHALF OF CFF. ALL DONATIONS THAT RESULT FROM MARKETING CAMPAIGNS WITH WHICH LAUTMAN MASKA NEILL & COMPANY ASSISTS WITH ARE MADE PAYABLE DIRECTLY TO THE FOUNDATION. CFF HAD A WRITTEN CONTRACT WITH TURNKEY PROMOTIONS TO CONSULT ON ITS PEER TO PEER FUNDRAISING CAMPAIGNS, STARTING IN AUGUST 2016. THE EXPENSE FOR THE PROJECT WAS $29,446. IN ADDITION TO THE CONSULTING ACTIVITIES THAT MAY BE CONSIDERED PROFESSIONAL FUNDRAISING SERVICES, CFF ALSO ENGAGED TURNKEY PROMOTIONS FOR PRIZE FULFILLMENT IN 2016. TURNKEY PROMOTIONS DOES NOT COLLECT ANY FUNDS ON BEHALF OF CFF. ALL DONATIONS THAT RESULT FROM MARKETING CAMPAIGNS WITH WHICH TURNKEY PROMOTIONS ASSISTS WITH ARE MADE PAYABLE DIRECTLY TO THE FOUNDATION. SCHEDULE G, PART III ON OCCASION, THE CYSTIC FIBROSIS FOUNDATION CONDUCTS RAFFLES, DRAWINGS, OR GAMES OF CHANCE AS PART OF ITS FUNDRAISING EVENTS. GAMING LICENSES ARE OBTAINED WHEN APPLICABLE PER STATE OR LOCAL REGULATION. THERE ARE CERTAIN STATES WHERE CFF ONLY CONDUCTS OPPORTUNITY DRAWINGS. ANY VOLUNTEER INVOLVEMENT IN SUCH ACTIVITIES WAS INSIGNIFICANT. NO OUTSIDE PARTY HAD ANY INVOLVEMENT IN GAMING ACTIVITIES AND THESE ACTIVITIES DO NOT GENERATE UNRELATED BUSINESS INCOME. THE EXECUTIVE DIRECTOR OF EACH CHAPTER IS RESPONSIBLE FOR OVERSEEING GAMING ACTIVITIES CONDUCTED BY THEIR CHAPTER. true UNIVERSITY PSYCHIATRIC PRACTICE INC (SUNY BUFFAL 462 GRIDER ST BUFFALO NY 14215 161426208 501c(3) 24195 ACADEMIC ADVISORY AWARD NEW YORK UNIVERSITY SCHOOL OF MEDICINE 550 FIRST AVENUE NEW YORK NY 10016 135562308 501c(3) 27000 ADULT CARE THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF 351 ENGINEERING TERRACE NEW YORK NY 10027 135598093 501c(3) 64800 ADULT CARE UNIVERSITY OF MASSACHUSETTS MEDICAL CENTER 55 LAKE AVENUE WORCESTER MA 10655 043167352 IRC 115 25240 ADULT CARE UNIVERSITY OF ROCHESTER 1325 MT HOPE AVENUE SUITE 260 ROCHESTER NY 14642 160743209 501c(3) 32400 ADULT CARE UNIVERSITY OF PITTSBURGH 350 THACKERAY HALL PITTSBURGH PA 15260 250965591 501c(3) 58384 ADULT CARE THE JOHNS HOPKINS UNIVERSITY 600 N WOLFE STREET PARK 316 BALTIMORE MD 21205 520595110 501c(3) 77559 ADULT CARE MEDICAL UNIVERSITY OF SOUTH CAROLINA PO BOX 997 CHARLESTON SC 29402 576000722 501c(3) 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UNIVERSITY COLLEGE OF MEDICINE OFFICE OF RESEARCH AFFAIRS H138 HERSHEY PA 17033 246000376 IRC 115 174050 CF CARE CENTER GEISINGER MEDICAL CENTER PEDIATRIC ALLERGY IMMUNOLOGY PUL 100 N ACADEMY DRIVE DANVILLE PA 17822 236291113 501c(3) 160443 CF CARE CENTER LEHIGH VALLEY HOSPITAL PEDIATRIC SPECIALTY CENTER 2545 SCHOENERSVILLE ROAD BETHLEHEM PA 18017 231689692 501c(3) 69193 CF CARE CENTER DREXEL UNIVERSITY 3201 ARCH STREET SUITE 420 PHILADELPHIA PA 19104 231352630 501c(3) 255331 CF CARE CENTER TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA ON BEHA 3451 WALNUT STREET FRANKLIN BLDG P-221 PHILADELPHIA PA 19104 231352685 501c(3) 56160 CF CARE CENTER CHRISTIANA CARE HEALTH SERVICES INC PO BOX 2653 WILMINGTON DE 19805 510103684 501c(3) 28500 CF CARE CENTER ALFRED I DUPONT INSTITUTE OF THE NEMOURS FOUNDATI 1600 ROCKLAND ROAD PO BOX 269 WILMINGTON DE 19899 590634433 501c(3) 75040 CF CARE CENTER CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVENUE NW WASHINGTON DC 20010 521640403 501c(3) 258957 CF CARE CENTER HENRY M JACKSON FOUNDATION FOR THE ADVANCEMENT OF 1404 ROCKVILLE PIKE SUITE 600 ROCKVILLE MD 20852 521317896 501c(3) 60000 CF CARE CENTER THE JOHNS HOPKINS UNIVERSITY 600 N WOLFE STREET PARK 316 BALTIMORE MD 21205 520595110 501c(3) 473019 CF CARE CENTER CAMC HEALTH EDUCATION AND RESEARCH INSTITUTE PO BOX 765 CHARLESTON WV 25323 550753754 501c(3) 67220 CF CARE CENTER DUKE UNIVERSITY OFFICE OF SPONSORED PROGRAMS BOX 104025 DURHAM NC 27710 560532129 501c(3) 208319 CF CARE CENTER CAROLINAS HEALTHCARE FOUNDATION 208 EAST BOULEVARD CHARLOTTE NC 28203 566060481 501c(3) 55100 CF CARE CENTER MISSION HEALTHCARE FOUNDATION INC 980 HENDERSONVILLE ROAD SUITE C ASHEVILLE NC 28803 561881331 501c(3) 31700 CF CARE CENTER UNIVERSITY OF SOUTH CAROLINA RESEARCH FOUNDATION 901 SUMTER STREET SUITE 501 COLUMBIA SC 29208 570967350 501c(3) 70530 CF CARE CENTER MEDICAL UNIVERSITY OF SOUTH CAROLINA PO BOX 997 CHARLESTON SC 29402 576000722 501c(3) 199340 CF CARE CENTER GREENVILLE HOSPITAL SYSTEM 701 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592244943 501c(3) 78530 CF CARE CENTER MIAMI CHILDREN'S HOSPITAL 3200 SW 60TH COURT MOB 203 MIAMI FL 33155 590638499 501c(3) 72990 CF CARE CENTER SOUTH BROWARD HOSPITAL DISTRICT JOE DIMAGGIOS CHILDRENS HOSPITAL CYSTIC FIBROSIS CLINIC HOLLYWOOD FL 33321 596014973 501c(3) 178240 CF CARE CENTER THE TAMPA GENERAL HOSPITAL FOUNDATION PO BOX 1289 TAMPA FL 33601 237354477 501c(3) 126650 CF CARE CENTER UNIVERSITY OF SOUTH FLORIDA DEPARTMENT OF PEDIATRICS 17 DAVIS BOULEVARD SUITE 200 TAMPA FL 33606 593102112 IRC 115 38430 CF CARE CENTER ALL CHILDREN'S HOSPITAL DEPT 9010 PO BOX 31020 ST PETERSBURG FL 33731 590683252 501c(3) 228597 CF CARE CENTER ERLANGER HEALTH SYSTEM 975 EAST THIRD STREET CHATTANOOGA TN 37403 626000101 501c(3) 49880 CF CARE CENTER EAST TENNESSEE CHILDREN'S HOSPITAL ASSOCIATION I 2100 CLINCH AVENUE 310 KNOXVILLE TN 37916 626002604 501c(3) 112100 CF CARE CENTER UNIVERSITY OF TENNESSEE MEDICAL CENTER 1940 ALCOA HWY SUITE E-110 KNOXVILLE TN 37920 311626179 501c(3) 148970 CF CARE 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MI 48201 386028425 501c(3) 144220 CF CARE CENTER MICHIGAN STATE UNIVERSITYKCMS 1000 OAKLAND DRIVE KALAMAZOO MI 49001 386005984 501c(3) 32730 CF CARE CENTER WESTERN MICHIGAN UNIVERSITY SCHOOL OF MEDICINE 1000 OAKLAND DRIVE KALAMAZOO MI 49008 454135256 501c(3) 29000 CF CARE CENTER SPECTRUM HEALTH FOUNDATION DOWNTOWN CAMPUS 100 MICHIGAN STREET NE MC 004 GRAND RAPIDS MI 49503 382752328 501c(3) 293732 CF CARE CENTER IOWA HEALTH FOUNDATION (BLANK CHILDREN'S CF CENTER 1440 INGERSOLL AVENUE DES MOINES IA 50309 421467682 501c(3) 79090 CF CARE CENTER UNIVERSITY OF IOWA GRANT ACCOUNTING OFFICE B 5 JESSUP HALL IOWA CITY IA 52242 426004813 IRC 115 205070 CF CARE CENTER BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SY 750 UNIVERSITY AVENUE MADISON WI 53706 396006492 IRC 115 324729 CF CARE CENTER MARSHFIELD CLINIC RESEARCH FOUNDATION 1000 NORTH OAK AVENUE MARSHFIELD WI 54449 390452970 501c(3) 84054 CF CARE CENTER GUNDERSEN LUTHERAN MEDICAL FOUNDATION 1900 SOUTH AVENUE LA CROSSE WI 54601 391249705 501c(3) 34770 CF CARE CENTER MAYO CLINIC ROCHESTER 200 FIRST STREET SW PLUMMER 5 ROCHESTER MN 55905 416011702 501c(3) 93700 CF CARE CENTER BILLINGS CLINIC 2800 10TH AVENUE NORTH BILLINGS MT 59107 810231784 501c(3) 78390 CF CARE CENTER LOYOLA UNIVERSITY OF CHICAGO 2160 S FIRST AVENUE MAYWOOD IL 60153 361408475 501c(3) 129750 CF CARE CENTER RUSH UNIVERSITY MEDICAL CENTER ST LUKE'S MEDICA 1725 WEST HARRISON SUITE 718 CHICAGO IL 60612 362174823 501c(3) 167952 CF CARE CENTER ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI 2300 CHILDRENS PLAZA - BOX 205 CHICAGO IL 60614 362170833 501c(3) 213619 CF CARE CENTER THE UNIVERSITY OF CHICAGO 5801 S ELLIS AVENUE CHICAGO IL 60637 362177139 501c(3) 241686 CF CARE CENTER OSF SAINT FRANCIS MEDICAL CENTER 530 NE GLEN OAK AVENUE PEORIA IL 61637 370662569 501c(3) 110880 CF CARE CENTER CARLE FOUNDATION HOSPITAL 611 W PARK STREET URBANA IL 61801 371119538 501c(3) 42930 CF CARE CENTER BOARD OF TRUSTEES OF SOUTHERN ILLINOIS UNIVERSITY DIVISION OF PULMONARY MEDICINE PO BOX 19636 SPRINGFIELD IL 62794 376005961 501c(3) 29260 CF CARE CENTER ST LOUIS UNIVERSITY 3500 LINDELL BLVD ST LOUIS MO 63103 430654872 501c(3) 177494 CF CARE CENTER CHILDREN'S MERCY HOSPITAL 2401 GILLHAM ROAD KANSAS CITY MO 64108 440605373 501c(3) 222730 CF CARE CENTER THE CURATORS OF THE UNIVERSITY OF MISSOURI OFFICE OF SPONSORED PROGRAM ADMINIS 310 JESSE HALL COLUMBIA MO 65211 436003859 IRC 115 218856 CF CARE CENTER VIA CHRISTI HOSPITAL WICHITA INC 707 N EMPORIA WICHITA KS 67214 481172106 501c(3) 117490 CF CARE CENTER TULANE UNIVERSITY MEDICAL SCHOOL 6401 FRERET ST NEW ORLEANS LA 70118 720423889 501c(3) 324708 CF CARE CENTER LSUMC - SHREVEPORT P O BOX 33932 SHREVEPORT LA 71130 720702002 501c(3) 120010 CF CARE CENTER ARKANSAS CHILDREN'S HOSPITAL RESEARCH INSTITUTE I 800 MARSHALL STREET SLOT 512-17 LITTLE ROCK AR 72202 710694931 501c(3) 113060 CF CARE CENTER UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 WEST MARKHAM STREET MAIL SLOT 555 LITTLE ROCK AR 72205 716046242 IRC 115 97810 CF CARE CENTER UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER PO BOX 26901 OKLAHOMA CITY OK 73190 731563627 IRC 115 347170 CF CARE CENTER UNIVERSITY OF TEXAS HEALTH CENTER AT TYLER 11937 US HWY 271 TYLER TX 75708 756001354 IRC 115 171374 CF CARE CENTER COOK CHILDREN'S MEDICAL CENTER CF CENTER 801 SEVENTH AVENUE FT WORTH TX 76104 752051646 501c(3) 222300 CF CARE CENTER SCOTT & WHITE MEMORIAL HOSPITAL 2401 SOUTH 31ST STREET TEMPLE TX 76508 741166904 501c(3) 41110 CF CARE CENTER BAYLOR COLLEGE OF MEDICINE PO BOX 1 HOUSTON TX 77212 741613878 501c(3) 443194 CF CARE CENTER DAUGHTERS OF CARING HEALTH SERVICES OF AUSTIN PO BOX 1 HOUSTON TX 77212 741109643 501c(3) 320477 CF CARE CENTER CHRISTUS SANTA ROSA HEALTHCARE 333 NORTH SANTA ROSA SAN ANTONIO TX 78207 741109665 501c(3) 34230 CF CARE CENTER DRISCOLL CHILDREN'S HOSPITAL CORPUS CHRISTI TX 78411 CORPUS CHRISTI TX 78411 742577746 501c(3) 25640 CF CARE CENTER TEXAS TECH UNIVERSITY HEALTH SCIENCES CENTER 3601 4TH STREET MAIL STOP 6591 LUBBOCK TX 79430 752668014 IRC 115 35540 CF CARE CENTER NATIONAL JEWISH MEDICAL AND RESEARCH CENTER 1400 JACKSON STREET DENVER CO 80206 742044647 501c(3) 247178 CF CARE CENTER ST LUKE'S REGIONAL MEDICAL CENTER 100 EAST IDAHO SUITE 200 BOISE ID 83712 820161600 501c(3) 170580 CF CARE CENTER UNIVERSITY OF UTAH 406 PARK BLDG SALT LAKE CITY UT 84112 876000525 501c(3) 411552 CF CARE CENTER PHOENIX CHILDREN'S HOSPITAL 1300 NORTH 12TH STREET PHOENIX AZ 85006 860422559 501c(3) 277061 CF CARE CENTER RENOWN HEALTH FOUNDATION 1155 MILL ST Z-5 RENO NV 89502 942972749 501c(3) 35460 CF CARE CENTER CHILDREN'S HOSPITAL LOS ANGELES RESEARCH INSTITUTE 4650 SUNSET BLVD LOS ANGELES CA 90027 951690977 501c(3) 196637 CF CARE CENTER UNIVERSITY OF SOUTHERN CALIFORNIA KECK SCHOOL OF M CONTRACTS AND GRANTS OFFICE 1540 ALCAZAR STREET CHP-100 LOS ANGELES CA 90033 951642394 501c(3) 54000 CF CARE CENTER MATTEL CHILDRENS HOSPITAL UNIVERSITY OF CALIFORNIA 10833 LE CONTE AVE MDCC 22-402 LOS ANGELES CA 90095 954372298 501c(3) 29830 CF CARE CENTER LOMA LINDA UNIVERSITY 11175 E CAMPUS STREET COLEMAN PAV A1120N LOMA LINDA CA 92354 953522679 501c(3) 66180 CF CARE CENTER LANDON PEDIATRIC FOUNDATION 3291 LOMA VISTA ROAD BUILDING 340 SUITE 302 VENTURA CA 93003 931097216 501c(3) 38400 CF CARE CENTER SANTA BARBARA COTTAGE HOSPITAL 2405 DE LA VINA STREET SANTA BARBARA CA 93105 951644629 501c(3) 34220 CF CARE CENTER CHILDREN'S HOSPITAL CENTRAL CALIFORNIA 9300 VALLEY CHILDRENS PLACE MADERA CA 93638 941294954 501c(3) 142499 CF CARE CENTER CALIFORNIA PACIFIC MEDICAL CENTER RESEARCH INSTITU 2200 WEBSTER STREET ROOM 405 SAN FRANCISCO CA 94115 940562680 501c(3) 49797 CF CARE CENTER KAISER FOUNDATION RESEARCH INSTITUTE 1800 HARRISON STREET 16TH FLOOR OAKLAND CA 94612 941105628 501c(3) 306580 CF CARE CENTER THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS CASHIERS OFFICE 1200 DUTTON HALL ONE SHIELDS AVENUE DAVIS CA 95616 946036494 501c(3) 165939 CF CARE CENTER SUTTER MEDICAL CENTER SACRAMENTO 5609 J STREET SUITE C SACRAMENTO CA 95819 941156621 501c(3) 64740 CF CARE CENTER OREGON HEALTH & SCIENCE UNIVERSITY SPONSORED PROJECTS ADMINISTRATION O 0690 SW BANCROFT STREET PORTLAND OR 97239 237083114 501c(3) 389869 CF CARE CENTER MARY BRIDGE CHILDREN'S FOUNDATION 311 SOUTH L STREET MAILSTOP B1-OC TACOMA WA 98405 943030039 501c(3) 56480 CF CARE CENTER UNIVERSITY OF MIAMI PEDIATRIC/PULMONARY DIVISION 1601 NW 12TH AVENUE MIAMI FL 33136 590624458 501c(3) 214310 CF CARE CENTER CHILDREN'S HEALTH CARE 2525 CHICAGO AVENUE SO 32-2210 MINNEAPOLIS MN 55404 411754276 501c(3) 129070 CF CARE CENTER UNIVERSITY OF WASHINGTON 4333 BROOKLYN AVENUE NE BOX 359472 SEATTLE WA 981959472 916001537 IRC 115 238740 CF CARE CENTER BAYSTATE MEDICAL CENTER (95-196) 759 CHESTNUT STREET SPRINGFIELD MA 01199 042790311 501c(3) 60680 CF CARE CENTER TUFTS MEDICAL CENTER 800 WASHINGTON STREET BOX 817 BOSTON MA 02111 043400617 501c(3) 27240 CF CARE CENTER THE GENERAL HOSPITAL CORPORATION ( MASSACHUSETTS G MASS GENERAL RESEARCH FINANCE PO BOX 414876 BOSTON MA 02114 042697983 501c(3) 269201 CF CARE CENTER CHILDREN'S HOSPITAL CORPORATION (BOSTON CHILDREN'S 300 LONGWOOD AVE BOSTON MA 021155737 042774441 501c(3) 436038 CF CARE CENTER RHODE ISLAND HOSPITAL 593 EDDY STREET PROVIDENCE RI 02903 050258954 501c(3) 163311 CF CARE CENTER THE HITCHCOCK FOUNDATION ONE MEDICAL CENTER DRIVE LEBANON NH 03756 020222139 501c(3) 212728 CF CARE CENTER MAINE MEDICAL CENTER 22 BRAMHALL STREET PORTLAND ME 04102 010238552 501c(3) 232623 CF CARE CENTER EASTERN MAINE MEDICAL CENTER 417 STATE STREET SUITE 305 BANGOR ME 04401 010211501 501c(3) 45830 CF CARE CENTER FLETCHER ALLEN HEALTH CARE 111 COLCHESTER AVE BURLINGTON VT 05401 030219309 501c(3) 167364 CF CARE CENTER UNIVERSITY OF VERMONT MEDICAL CENTER INCFLETCHE PO BOX 1870 BURLINGTON VT 05402 030219309 501c(3) 121360 CF CARE CENTER HARTFORD HOSPITAL (CENTRAL CT CYSTIC FIBROSIS CTR) DEPARTMENT OF MEDICINE 80 SEYMOUR STREET HARTFORD CT 06102 060646668 501c(3) 178333 CF CARE CENTER 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AUSTIN P O BOX 7726 AUSTIN TX 787137726 746000203 IRC 115 136830 RESEARCH STUDY THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F UCSF OFFICE OF SPONSORED RESEARCH 3333 CALIFORNIA STREET SUITE 315 SAN FRANCISCO CA 941430962 946036493 501c(3) 46230 RESEARCH STUDY UNIVERSITY OF PITTSBURGH 350 THACKERAY HALL PITTSBURGH PA 15260 250965591 501c(3) 62144 TRAINING EMORY UNIVERSITY 1599 CLIFTON RD NE ATLANTA GA 30322 580566256 501c(3) 67750 TRAINING VANDERBILT UNIVERSITY MEDICAL CENTER 1161 21ST AVENUE SOUTH SUITE D3300 MCN NASHVILLE TN 37232 352528741 501c(3) 130000 TRAINING THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S H 700 CHILDRENS DRIVE DEPT 4656 / REF 413407 COLUMBUS OH 43260 316056230 501c(3) 130000 TRAINING CHILDREN'S HOSPITAL MEDICAL CENTER (CINCINNATI CHI RESEARCH ACCOUNTING 3333 BURNET AVENUE CINCINNATI OH 45229 310833936 501c(3) 66250 TRAINING UNIVERSITY OF IOWA GRANT ACCOUNTING OFFICE B 5 JESSUP HALL IOWA CITY IA 52242 426004813 IRC 115 105000 TRAINING BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SY 750 UNIVERSITY AVENUE MADISON WI 53706 396006492 IRC 115 61250 TRAINING UNIVERSITY OF COLORADO HEALTH SCIENCES CENTER 4200 E 9TH AVENUE DENVER CO 80262 846000555 501c(3) 66250 TRAINING UNIVERSITY OF MIAMI PEDIATRIC/PULMONARY DIVISION 1601 NW 12TH AVENUE MIAMI FL 33136 590624458 501c(3) 100000 TRAINING THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE MASS GENERAL RESEARCH FINANCE PO BOX 414876 BOSTON MA 02114 042697983 501c(3) 278845 TRAINING CHILDREN'S HOSPITAL CORPORATION (BOSTON CHILDREN'S 300 LONGWOOD AVE BOSTON MA 021155737 042774441 501c(3) 63750 TRAINING THE CHILDREN'S HOSPITAL OF PHILADELPHIA 3516 CIVIC CENTER BLVD PHILADELPHIA PA 191044318 231352166 501c(3) 61250 TRAINING VIRGINIA COMMONWEALTH UNIVERSITY BOX 2506 - VCU STATION RICHMOND VA 232842506 546001758 IRC 115 61250 TRAINING THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL NORTH CAROLINA STATE TREASURER OFFICE OF SPONSORED RESEARCH CHAPEL HILL NC 275991350 566001393 501c(3) 127500 TRAINING THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 1530 3RD AVE S THT422 BIRMINGHAM AL 352940006 636005396 501c(3) 68500 TRAINING TRUSTEES OF INDIANA UNIVERSITY FINANCIAL MANAGEMENT SERVICES PO BOX 66057 BLOOMINGTON IN 462666057 356001673 501c(3) 227500 TRAINING THE REGENTS OF THE UNIVERSITY OF MICHIGAN 3003 SOUTH STATE STREET ROOM 3089 ANN ARBOR MI 481091274 386006309 501c(3) 66250 TRAINING THE REGENTS OF THE UNIVERSITY OF MINNESOTA SPONSORED PROJECTS ADMINISTRATION 200 OAK ST SE MINNEAPOLIS MN 554552070 416007513 IRC 115 66250 TRAINING UT SOUTHWESTERN MEDICAL CENTER AT DALLAS 5323 HARRY HINES BLVD DALLAS TX 753909040 756002868 IRC 115 61250 TRAINING REGENTS OF THE UNIVERSITY OF COLORADO AT DENVER GRANTS CONTRACTS F428 FITZSIMONS BUILDING 500 AURORA CO 800450508 846000555 501c(3) 124000 TRAINING THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F UCSF OFFICE OF SPONSORED RESEARCH 3333 CALIFORNIA STREET SUITE 315 SAN FRANCISCO CA 941430962 946036493 501c(3) 230000 TRAINING The Medical College of Wisconsin 8701 Watertown Plk Rd Milwaukee WI 53226 390806261 501C(3) 317055 CF CARE CENTER Saint Barnabas Medical Center Pediatric Pulmonary Division Livingston NJ 07039 221494440 501C(3) 35230 CF CARE CENTER CYSTIC FIBROSIS FOUNDATION THERAPEUTICS INC 4550 MONTGOMERY AVE SUITE 1100N BETHESDA MD 20814 912059167 501c(3) 138829706 GENERAL SUPPORT 201 0 PATIENT ASSISTANCE PROGRAM 51 45977 FELLOWSHIPS 9 73745 COMMUNITY IMPACT GRANTS 2 17854 PROCEDURES FOR MONITORING GRANT FUNDS INSIDE OF THE U.S. SCHEDULE I, PART I, LINE 2 THE ORGANIZATION HAS PROCEDURES IN PLACE TO MONITOR THE SCIENTIFIC PROGRESS AND FINANCIAL ASPECTS OF GRANT FUNDS AWARDED TO ENTITIES INSIDE OF THE U.S. SPONSORED INSTITUTIONS ARE REQUIRED TO SUBMIT ANNUAL REPORTS OF EXPENDITURES AS WELL AS SCIENTIFIC PROGRESS REPORTS. SCIENTIFIC REPORTS ARE REVIEWED BY THE ORGANIZATION'S SCIENTIFIC STAFF TO ENSURE PROGRESS HAS BEEN ATTAINED. THE FINAL GRANT PAYMENT IS CONTINGENT UPON RECEIPT AND APPROVAL OF THE REPORT OF EXPENDITURES. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. THE CF FOUNDATION'S INTERNAL AUDITORS CONDUCT AUDITS ON SAMPLES OF GRANT EXPENDITURE REPORTS BY EXAMINING SUPPORTING RECORDS FROM THE SPONSORED INSTITUTION. 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 CFF PERFORMED EXTENSIVE MONITORING OF PATIENT ASSISTANCE GRANTS IN ACCORDANCE WITH DHHS OIG REGULATIONS. FELLOWSHIPS ARE AWARDED TO INVESTIGATORS CONDUCTING RESEARCH RELATED TO GRANTS REPORTED IN PART II. SEE SUPPLEMENTAL INFORMATION FOR PART I, LINE 2 FOR PROCEDURES USED TO MONITOR THESE GRANTS. PRIOR TO MAKING FELLOWSHIP PAYMENTS, SUPPORTING DOCUMENTATION OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. COMMUNITY IMPACT GRANTS ARE AWARDED TO INDIVIDUALS CONDUCTING PROGRAMS PROPOSED BY AND FOR PEOPLE WITH CF AND THEIR FAMILIES. PRIOR TO MAKING FINAL IMPACT GRANT PAYMENTS, EXPENDITURE REPORTS ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. X X X X X X true true false false false false false true false PRESTON CAMPBELL MD PRESIDENT & CEO 357226 180509 152289 75008 107125 49057 162842 66877 26232 0 805714 371451 147413 72607 JOHN MAHLER MD CHIEF INVESTMENT OFFICER 177342 0 650000 0 3403 0 100000 0 9987 0 940732 0 0 0 MARC S GINSKY EXECUTIVE VP, COO & SECRETARY 279180 0 25000 0 1360 0 128668 0 20974 0 455182 0 0 0 VERA H TWIGG EXECUTIVE VP & CFO 319108 0 128023 0 18000 0 72613 0 30411 0 568155 0 41247 0 ROBERT J BEALL PHD FORMER CEO&CURRENT CONSULTANT 268508 3206 210054 103459 39476 19444 565 0 0 0 518603 126109 113893 56096 C RICHARD MATTINGLY FORMER COO 0 0 0 0 135951 0 7251 0 0 0 143202 0 102921 0 DRUCY S BOROWITZ MD SVP, COMMUNITY PARTNERSHIPS 307519 0 10000 0 3348 0 5000 0 2550 0 328417 0 0 0 TIMOTHY A WAIRE JR CHIEF INFORMATION OFFICER 262540 0 44653 0 813 0 32060 0 30411 0 370477 0 0 0 LEAH BLOOM PHD CHIEF OF STRATEGY 274659 0 30529 0 489 0 14780 0 34218 0 354675 0 0 0 WILLIAM BLANTON DIRECTOR OF INVESTMENTS 266030 0 42900 0 542 0 27060 0 1350 0 337882 0 0 0 MARYBETH MCMAHON PHD CHIEF OF STAFF 255891 0 35856 0 2326 0 32060 0 19035 0 345168 0 0 0 BRUCE MARSHALL MD SENIOR VP, CLINICAL AFFAIRS 323150 79919 60229 14896 2933 725 25703 6357 46 11 412061 101908 0 0 WILLIAM SKACH MD SENIOR VP, RESEARCH AFFAIRS 50388 285530 7259 41136 545 3091 3683 20872 4442 25170 66317 375799 0 0 PART I, LINE 4A SEVERANCE PAYMENTS: 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. PART I, LINE 7 SEVERAL INDIVIDUALS LISTED IN FORM 990, PART VII, SECTION A, LINE 1A, (WHO ARE IDENTIFIED IN PART II, BELOW) PARTICIPATED IN 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 ACHIEVEMENT 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, LUMP-SUM PAYMENTS, OTHER PROGRAM-RELATED INCOME, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES) RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. PART II CYSTIC FIBROSIS FOUNDATION. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $357,226; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $92,169, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $60,120; (B)(III) OTHER REPORTABLE COMPENSATION: TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $7,524, AUTOMOBILE ALLOWANCE - $4,824, OTHER BENEFITS - $8,375, VESTED SERP ACCOUNT (8) - $86,402; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $70,122, SERP (4) - $65,660; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $16,970, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,550, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $6,712; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $147,413. CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $180,509; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $45,396, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $29,612; (B)(III) OTHER REPORTABLE COMPENSATION: AUTOMOBILE ALLOWANCE - $2,376, OTHER BENEFITS - $4,125, VESTED SERP ACCOUNT (8) - $42,556; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $34,537, SERP (4) - $32,340; (D) NONTAXABLE BENEFITS: $0; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $72,607. CYSTIC FIBROSIS FOUNDATION. (A) NAME: M. GINSKY.; (B)(I) BASE COMPENSATION: BASE SALARY - $279,180; (B)(II) BONUS & INCENTIVE COMPENSATION: GUARANTEED INCENTIVE $25,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $1,360; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $128,668; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $14,001, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,400, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,573; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $0. CYSTIC FIBROSIS FOUNDATION. (A) NAME: V. TWIGG; (B)(I) BASE COMPENSATION: BASE SALARY - $319,108; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $86,776, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $41,247; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN (5) - $18,000; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $38,375, SERP (4) - $7,178; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $20,429, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,550, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $7,432; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $41,247. CYSTIC FIBROSIS FOUNDATION. (A) NAME: J. MAHLER; (B)(I) BASE COMPENSATION: BASE SALARY - $177,342; (B)(II) BONUS & INCENTIVE COMPENSATION: GUARANTEED INCENTIVE (9) $650,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $3,403; (C) DEFERRED COMPENSATION: SERP (4) - $100,000; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $7,521, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $700, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $1,766; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $0. CYSTIC FIBROSIS FOUNDATION. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $6,508; EXECUTIVE ADVISORY CONSULTING SERVICES FEES - $262,000; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT FOR 2015 (1) $124,948, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS EARNED IN PRIOR YEARS AND PREVIOUSLY REPORTED AS DEFERRED COMPENSATION (6) - $85,106; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN DISTRIBUTION (7) - $39,476; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $565; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $113,893. CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $3,206; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT FOR 2015 (1) $61,541, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS EARNED IN PRIOR YEARS AND PREVIOUSLY REPORTED AS DEFERRED COMPENSATION (6) - $41,918; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN DISTRIBUTION (7) - $19,444 (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $56,096. CYSTIC FIBROSIS FOUNDATION. (A) NAME: R. MATTINGLY; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN DISTRIBUTION (7) - $76,130; SEVERANCE PAY (10) - $59,821; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN SEVERANCE BENEFIT (11) - $7,251; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (3) - $102,921. (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, LUMP-SUM PAYMENTS, OTHER PROGRAM-RELATED INCOME, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES) RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. (2) THIS IS THE EMPLOYER CONTRIBUTION MADE UNDER THE CYSTIC FIBROSIS FOUNDATION 401(K) PLAN FOR THE 2016 PLAN YEAR. (3) THIS AMOUNT, ALTHOUGH ALSO INCLUDED IN COLUMN B OF THIS FORM 990, HAS ALREADY BEEN REPORTED AS COMPENSATION ON PRIOR YEARS' FORM 990S, AND THEREFORE (AS REQUIRED BY THE INSTRUCTIONS) IS DOUBLE-REPORTED HERE. (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. SERP CONTRIBUTION AMOUNTS WERE DETERMINED BY AN INDEPENDENT ACTUARY. 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. AN INDEPENDENT ACTUARY DEVELOPED THE CONTRIBUTION FORMULA PURSUANT TO WHICH 457(B) CONTRIBUTION AMOUNTS ARE DETERMINED. CONTRIBUTIONS TO THE 457(B) PLAN ARE SUBJECT TO ANNUAL IRS LIMITS (CURRENTLY $18,000). E. CFF RETAINS THE RIGHT TO AMEND OR TERMINATE THE 457(B) PLAN AT ANY TIME. (6) THIS PLAN PROVIDES FOR AWARDS THAT RELATE TO A THREE-YEAR PERFORMANCE PERIOD, SUBJECT TO, AND BASED ON, ACHIEVEMENT OF PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES (SUCH AS ROYALTY STREAMS, LUMP-SUM PAYMENTS, OTHER PROGRAM-RELATED INCOME, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES) RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. EACH YEAR, A NEW THREE-YEAR PERFORMANCE PERIOD BEGINS. AS REQUIRED BY THE FORM 990 INSTRUCTIONS, THE AMOUNTS REPORTED IN COLUMN (C) ON THIS FORM 990 REFLECT AN ESTIMATE OF THE PORTION OF EACH AWARD THAT THE EXECUTIVE ACCRUED UNDER THE PLAN FOR PERFORMANCE IN 2016 (I.E., WITH RESPECT TO THE 2014-2016, 2015-2017 AND THE 2016-2018 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 12/31/16, 12/31/17 AND 12/31/18 TO BE ELIGIBLE TO RECEIVE FULL PAYMENT OF THE AWARD FOR THE 2014-2016, 2015-2017, AND THE 2016-2018 PERFORMANCE PERIODS, RESPECTIVELY. THE AWARD RELATING TO THE 3-YEAR PERFORMANCE PERIOD ENDING 12/31/15 WAS PAID IN 2016, AND IS PROPERLY REPORTE X 106 40112 NET CASH RECEIPTS X 185 2695909 NET CASH RECEIPTS X TANGIBLE&SERVICE AUCTION ITEMS 20941 8802424 NET CASH RECEIPTS 1 false true true THIRD PARTY SELLER SCHEDULE M, PART I, LINE 6 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. SIGNIFICANT CHANGES TO GOVERNING DOCUMENTS PART VI, SECTION A, LINE 4 DURING 2016, THE CYSTIC FIBROSIS FOUNDATION AMENDED ITS BYLAWS TO 1) CHANGE THE NUMBER OF AT LARGE TRUSTEES FROM 16 TO 12-18 AND 2) EXPAND THE DURATION OF TRUSTEE AT LARGE, BOARD OFFICER AND COUNCIL CHAIR TERMS TO THREE YEARS. REVIEW OF 990 BY GOVERNING BODY PART VI, SECTION B, LINE 11B 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 FOUNDATIONS 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. CONFLICT OF INTEREST MONITORING PART VI, SECTION B, LINE 12C A CONFLICT OF INTEREST DISCLOSURE STATEMENT IS COMPLETED ANNUALLY BY EACH BOARD MEMBER, OFFICER, AND KEY EMPLOYEE. DISCLOSURES PROVIDED ARE REPORTED TO THE GOVERNANCE COMMITTEE AND THE BOARD OF TRUSTEES. AS REQUIRED WITHIN THE BYLAWS, ANY POTENTIAL CONFLICTS OF INTEREST MUST BE REPORTED TO THE BOARD AS THEY ARISE. WHEN ANY MATTER IS DEEMED A POTENTIAL CONFLICT OF INTEREST AND REQUIRES ACTION BY THE BOARD OF TRUSTEES, THE INTERESTED TRUSTEE OR OFFICER IS REQUIRED TO RETIRE 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 2016 AND HAD NO CONFLICTS OF INTEREST AS DEFINED BY THE POLICY. DETERMINING COMPENSATION PART VI, SECTION B, LINE 15A AND 15B THE TOTAL COMPENSATION OF EXECUTIVES AT THE 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 EXECUTIVES TOTAL COMPENSATION, INCLUDING BUT NOT LIMITED TO BASE SALARY, BONUSES, PERQUISITES, FRINGE BENEFITS, AND INCENTIVE AND DEFERRED COMPENSATION ARRANGEMENTS. UPON THE EXECUTIVES HIRE, AND AT EACH POINT IN TIME THEREAFTER AT WHICH A NEW OR REVISED COMPENSATION ARRANGEMENT IS UNDER CONSIDERATION WITH RESPECT TO THE EXECUTIVE, THE COMMITTEE MEETS WITH ITS INDEPENDENT COMPENSATION CONSULTING FIRM BEFORE THE ARRANGEMENT IS IMPLEMENTED TO EVALUATE THE REASONABLENESS OF THE ARRANGEMENT BY COMPARING BOTH THE ARRANGEMENT ITSELF AND THE EXECUTIVES ENTIRE COMPENSATION PACKAGE TO COMPENSATION PACKAGES PAID BY SIMILARLY SITUATED ORGANIZATIONS FOR FUNCTIONALLY COMPARABLE POSITIONS. (5) DOCUMENTS, CONCURRENTLY WITH ITS DETERMINATION, THE BASIS FOR ITS DETERMINATION IN THE MINUTES OF ITS MEETING. THESE MINUTES ARE REVIEWED, REVISED IF NECESSARY AND APPROVED AT THE FOLLOWING MEETING OF THE COMMITTEE. (6) OBTAINS A WRITTEN LEGAL OPINION CONCERNING THE COMMITTEES COMPLIANCE WITH THE IRS INTERMEDIATE SANCTIONS RULES. THE PROCESS DESCRIBED ABOVE WAS USED TO ESTABLISH COMPENSATION FOR THE FOLLOWING OFFICERS OR KEY EMPLOYEES OF THE ORGANIZATION: PRESIDENT & CEO EXECUTIVE VICE PRESIDENT, COO AND SECRETARY EXECUTIVE VICE PRESIDENT AND CFO CHIEF INVESTMENT OFFICER SENIOR VP, RESEARCH AFFAIRS SENIOR VP, CLINICAL AFFAIRS THE PROCESS WAS LAST UNDERTAKEN IN 2016, WITH THE EXCEPTION OF THAT FOR THE CEO POSITION WHICH WAS LAST CONDUCTED IN 2015. PUBLIC INSPECTION PART VI, SECTION C, LINE 19 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 FOUNDATIONS 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 FOUNDATIONS WEBSITE, WWW.CFF.ORG, DURING 2016. THE BOARD AND OFFICER CONFLICT OF INTEREST POLICY AND THE AUDITED FINANCIAL STATEMENTS WERE AVAILABLE ON THE FOUNDATIONS WEBSITE, WWW.CFF.ORG, DURING 2016. PART VII, SECTION A REPORTABLE COMPENSATION FROM THE ORGANIZATION A PORTION OF THIS BASE COMPENSATION AMOUNT WAS PAID TO DR. BEALL WITH RESPECT TO HIS SERVICES AS AN EMPLOYEE, WHICH TERMINATED ON 12/31/15. HE WAS PAID FOR THOSE SERVICES IN ACCORDANCE WITH THE ORGANIZATIONS STANDARD PAY PRACTICES, WHICH CAUSED HIS FINAL PAYCHECK AS AN EMPLOYEE TO BE PAID ON THE FIRST PAYDATE DURING 2016. THEREFORE THE COMPENSATION IS REPORTABLE COMPENSATION FOR 2016. DR. BEALL RECEIVED NO BASE PAY AS A FORMER OFFICER OF THE ORGANIZATION. IN ADDITION, DR. BEALL RECEIVED COMPENSATION FOR SERVICES HE PROVIDED AS AN INDEPENDENT CONTRACTOR FOR EXECUTIVE ADVISORY CONSULTING SERVICES HE PROVIDED TO THE ORGANIZATION DURING 2016. FORM 990, PART X, LINE 27 UNRESTRICTED NET ASSETS BOARD DESIGNATED THE FOUNDATIONS UNRESTRICTED NET ASSETS TOTALED $3,720,457,947 AS OF DECEMBER 31, 2016. OF THIS AMOUNT, THE FOUNDATIONS BOARD OF TRUSTEES HAS DESIGNATED $3,300,000,000 TO BE SPENT IN SUPPORT OF THE MISSION OF THE FOUNDATION OVER THE LONG TERM. CYSTIC FIBROSIS PATIENT ASSISTANCE FDN 4550 MONTGOMERY AVE STE 1100 N BETHESDA MD 20814 900350985 PATIENT ASST DE 0 0 CFF CYSTIC FIBROSIS FOUNDATION THERAPEUTICS 4550 MONTGOMERY AVE STE 1100 N BETHESDA MD 20814 912059167 RESEARCH MD 501(c)(3) 11A CFF false false true false false false false false false false false false false false true true false false false false CYSTIC FIBROSIS FOUNDATION THERAPEUTICS B 138829706 FMV CYSTIC FIBROSIS FOUNDATION THERAPEUTICS N 920354 COST CYSTIC FIBROSIS FOUNDATION THERAPEUTICS O 1972835 COST