2013-09-04T10:51:13-05:00 2012-12-31 BDO USA LLP 8405 GREENSBORO DRIVE 7TH FLOOR MCLEAN VA 22102 990 2012-01-01 131930701 CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS % ROBERT J BEALL PHD CYST 3019514422 6931 ARLINGTON ROAD Suite 200 BETHESDA MD 20814 ROBERT J BEALL PHD 7038930600 2013-09-04 true JEFFREY J SCHRAGG 7038930600 2012 2016-02-24 21:20:13Z ROBERT J BEALL PHD 6931 ARLINGTON ROAD STE 200 BETHESDA MD 20814 351163842 false X WWW.CFF.ORG X 1955 DE THE MISSION IS TO ASSURE THE DEVELOPMENT OF THE MEANS TO CURE AND CONTROL CYSTIC FIBROSIS (CF) AND TO IMPROVE THE QUALITY OF LIFE FOR THOSE WITH THE DISEASE. 17 16 329 250000 0 0 101016403 193893253 26269945 30108699 7266699 32829942 2027137 3987082 136580184 260818976 74501565 25842486 0 0 27272258 29994467 0 0 9920842 23947791 23451961 125721614 79288914 10858570 181530062 216321364 435100702 40872449 84470819 175448915 350629883 X THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION, A NONPROFIT DONOR SUPPORTED ORGANIZATION, IS TO ASSURE THE DEVELOPMENT OF THE MEANS TO CURE AND CONTROL CYSTIC FIBROSIS (CF) AND TO IMPROVE THE QUALITY OF LIFE FOR THOSE WITH THE DISEASE. A LIFE SHORTENING GENETIC DISEASE, CF AFFECTS THE LUNGS AND DIGESTIVE SYSTEMS OF NEARLY 30,000 CHILDREN AND YOUNG ADULTS IN THE U.S. CURRENTLY, THERE IS NO CURE. false false 36733174 24194956 1647057 Medical Programs - Since 1955, the Cystic Fibrosis Foundation has been dedicated to curing and controlling cystic fibrosis (CF). The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis, a life-threatening genetic disease that affects 30,000 children and adults in the United States, and 70,000 people 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 110 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. 1) Through the Foundation's efforts, the life expectancy of a child with CF has doubled in the last 30 years, and research to find a cure is more promising than ever before. 2) 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. 3) The Foundation supports and accredits a nationwide network of more than 110 CF care centers, which diagnose and treat nearly all CF patients. The care center network is widely recognized as a national model for specialized treatment of a disease. 4) The Foundation's patient registry collects information on the health status of more than 27,000 CF patients, 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. 5) Medical programs consist of approximately 360 grants and other costs to support scientific studies/investigations and cystic fibrosis centers. Approximately 207 grants totaling $12.6 million were awarded to cystic fibrosis care centers serving approximately 27,800 patients. 13295083 1647530 28461642 In 2012, Cystic Fibrosis Foundation Pharmacy, LLC (CFFP) provided program management services to Cystic Fibrosis Patient Assistance Foundation, LLC (CFPAF) and program management services and licensing to Cystic Fibrosis Services, Inc. (CFS). CFFP provided availability and access to cystic fibrosis medications, as well as assistance with the complex insurance issues faced in obtaining these medications. CFFP provided personalized service, patient advocacy, patient education and reimbursement support to the CF community. In 2012, CFFP served 9,642 patients. CFFP fulfilled 77,264 orders to CF patients under manufacturer programs to assist patients in need. CFFP staff assisted CF patients with 193,607 prescriptions in 2012 by filing primary, secondary and tertiary insurance claims, as needed. on December 6 2012, the Foundation sold an 80% Controlling interest in CFFP to an unrelated third party. Prior to December 6, 2012, CFFP was wholly owned by Cystic Fibrosis Foundation. See schedule O for additional information regarding this transaction. The mission of the Cystic Fibrosis Patient Assistance Foundation (CFPAF) is to assist cystic fibrosis patients residing in the United States, regardless of their health insurance coverage or financial resources, with access to FDA-approved drugs (and paired devices) for the inhaled treatment of cystic fibrosis pulmonary disease and to medications for the treatment of pancreatic insufficiency. Furthermore, the CFPAF is committed to maintaining the highest standards of customer service and operating efficiency, in order to maximize the support and assistance that it can provide to the CF community. In 2012, CFPAF responded to 27,633 calls for assistance and provided case management and $1,647,530 in patient assistance grants. In 2012, CFPAF helped more than 950 people with CF. 9995937 0 0 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 CF patients and their families, medical professionals and the general public regarding the disease. In 2012, there were 22 publications, 9 webcasts and 22 videos produced and made available for patients, 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 2012, over 2,299,000 unique visitors came to the organization's website. 2970848 0 0 62995042 true true false true false false false false false true true false false true false false true false false true true false false false false false true true true false false false false false false false false false false false false true true true true false false true 246 0 329 true false false false false false false false false false false X 17 16 false false false false false false false true true false true true true true true true true true true true false AL AK AZ AR CA CT FL GA HI IL IN KS KY MD MA MI MN MS NH NJ NM NY OH OK OR PA RI SC TN UT VA WA WV WI X X ROBERT J BEALL PHD 3019514422 6931 ARLINGTON ROAD STE 200 BETHESDA MD 20814 X MICHAEL L BEATTY 3.0 3.0 X 0 0 0 J TAYLOR CRANDALL 3.0 3.0 X 0 0 0 RICHARD L DANDURAND 3.0 3.0 X 0 0 0 RICHARD J GRAY 3.0 3.0 X 0 0 0 BARRY M GUMP 3.0 3.0 X 0 0 0 SUSAN L HOOK 3.0 3.0 X 0 0 0 CATHERINE C MCLOUD 5.0 8.0 X 0 0 0 CHAD T MOORE 3.0 3.0 X 0 0 0 DAVID A MOUNT 3.0 3.0 X 0 0 0 GRAY B SABIN 3.0 3.0 X 0 0 0 CHRISTY L SHAFFER PHD 3.0 8.0 X 0 0 0 STEVEN SHAK MD 3.0 6.0 X 0 0 0 CHARLES J THAYER 3.0 3.0 X 0 0 0 AMY S WEINBERG 3.0 3.0 X 0 0 0 PAUL W WHETSELL 3.0 3.0 X 0 0 0 KC BRYAN WHITE 3.0 3.0 X 0 0 0 ROBERT J BEALL PHD 36.0 24.0 X X 669561 329867 112672 C RICHARD MATTINGLY 50.0 10.0 X 466050 0 168894 PRESTON CAMPBELL MD 36.0 24.0 X 301432 151900 155629 VERA H TWIGG 50.0 10.0 X 335965 0 77783 DANIEL KLEIN 50.0 X 411943 0 35595 ANN PALMER 50.0 X 224058 0 55108 JAMES STONE 50.0 X 225052 0 30484 DAVID MCLOUGHLIN 40.0 10.0 X 210744 52686 57736 GREGORY AUGUST 50.0 X 209056 0 52146 GLEN GOLDMARK 50.0 X 206181 0 45479 AMY DEMARIA 50.0 X 204533 0 33920 3464575 534453 825446 66 false true false ICS CORPORATION 2225 RICHMOND ST PHILADELPHIA PA 19125 MAILSHOP 953560 RAYMOND JAMES ASSOCIATES 880 CARILLON PARKWAY ST PETERSBURG FL 33716 TRANSACTION ADVISORY 867262 HUB LABELS 18223 SHAWLEY DRIVE HAGERSTOWN MD 21740 PRINTING 825170 SUFIAN PASSAMANO 712 main street suite 2130 HOUSTON TX 77002 CASE MGMT/HOTLINE SV 779250 THE PEABODY ORLANDO 9801 INTERNATIONAL DR ORLANDO FL 32819 CONFERENCE VENUE 759799 43 X 890 178702224 15190139 193893253 SCIENTIFIC CONFERENCE 611600 1622297 1622297 PROGRAM MANAGEMENT FEES 541900 9360900 9360900 CALL CENTER 541900 2153493 2153493 LICENSE FEES 900003 16947249 16947249 TRANSITION SERVICES 541610 24760 24760 30108699 10639322 10639322 0 3506450 3506450 0 0 0 83391315 29144171 82581005 7763861 810310 21380310 22190620 22190620 0 0 0 LIST RENTAL 533110 480632 480632 480632 260818976 13161450 53764273 23530938 23530938 1670420 1670420 641128 641128 0 2681208 1955399 418137 307672 0 21805285 15902544 3400554 2502187 1360247 992025 212132 156090 2491848 1817299 388606 285943 1655879 1247462 209114 199303 0 578023 537516 40507 0 182708 55611 127097 0 252712 252712 0 0 0 106366 0 106366 0 3030329 2245033 0 785296 33502 20436 5360 7706 1748045 1564032 75299 108714 3896695 3063964 306872 525859 0 1634556 1214017 259671 160868 793201 699429 27316 66456 0 2443790 2401735 13829 28226 0 0 532604 448971 43658 39975 447871 363025 33216 51630 DIRECT MAIL PRINTING 2998803 824371 0 2174432 DIRECT MAIL POSTAGE 2785473 765727 0 2019746 TRAINING 546284 341205 87067 118012 MAILING LIST RENTAL 464438 127674 0 336764 976561 312369 618229 45963 79288914 62995042 6373030 9920842 X 8356668 2297323 0 6059345 X 0 0 29623023 85991958 17362252 18589070 3775431 3897769 0 0 0 0 0 0 462935 341763 1615334 1169059 6400089 3899882 2580064 2500207 117635184 231212469 42519485 84037853 0 0 0 0 747656 7360554 216321364 435100702 12344388 19779258 19846941 23616669 3567174 3851863 0 0 0 0 0 0 0 0 0 0 5113946 37223029 40872449 84470819 X 154243452 330610330 17895922 16291346 3309541 3728207 175448915 350629883 216321364 435100702 X 181530062 10435972 -16785066 X false true X true false X false false false 112573276 94548345 106799244 101016043 193893253 608830161 0 0 112573276 94548345 106799244 101016043 193893253 608830161 0 608830161 5292496 2946628 2848122 4888930 14145772 30121948 1916 0 0 0 0 1916 998418 636827 467607 576265 480632 3159749 642113774 109095776 0.94817 0.94910 X 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. Program management fees represent charges for the management of operations provided by cystic fibrosis foundation pharmacy, LLC (CFFP) (formerly a disregarded entity of the organization) to cystic fibrosis services, inc. (cfs)(a subsidiary of cffp). License fees were paid by cfs to cffp for promotion of the cfs pharmacy, featuring on the website, use of patient education and communication materials, use of organization name, logo and trademark, etc. cfs's sole activity was to operate and manage a specialty pharmacy that sold cystic fibrosis related prescription pharmaceuticals, related durable medical equipment and non-prescription cystic fibrosis related vitamins and supplements. Cfs served patients who have been diagnosed with cystic fibrosis. This revenue is not taxable because the organization received a private letter ruling determining that cfs's activities were related to the organization's exempt purpose. The foundation sold an 80% controlling interest in cffp to an unrelated third party on December 6, 2012. See schedule O for additional information about this transaction. Transition services amount represents fees earned in connection with temporary information technology, telecommunications, and transition-related services provided by the foundation in connection with the change in the pharmacy's ownership. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 186450 501566 688016 78600898 79288914 1000000 250000 1000000 1000000 1000000 1000000 4000000 6000000 165973 257023 572513 688016 1683525 250000 250000 250000 250000 1000000 1500000 14000 11250 91903 186450 303603 1153324 377546 775778 5246765 3522336 1724429 2500207 SHORT DURATION BOND MUT FUNDS 25183675 F INFLATION HEDGE MUTUAL FUNDS 11087549 F LONG/SHORT EQUITY FUND 17279639 F ABSOLUTE VALUE FUND 26697163 F OTHER HEDGE FUND 61620 F PERPETUAL TRUSTS 3728207 F 84037853 0 INTERCOMPANY PAYABLE 37223029 37223029 true North America Grantmaking NONE 97126 Europe (Including Iceland and Greenland) Grantmaking NONE 446802 Middle East and North Africa Grantmaking NONE 97200 641128 641128 North America 97126 CHECK Europe (Including Iceland and Greenland) RESEARCH 185902 WIRE Europe (Including Iceland and Greenland) PILOT STUDIES 43200 WIRE Europe (Including Iceland and Greenland) PILOT STUDIES 21500 WIRE Europe (Including Iceland and Greenland) PILOT STUDIES 43200 WIRE Europe (Including Iceland and Greenland) QUALITY IMPROVEMENT 153000 WIRE Middle East and North Africa RESEARCH 97200 WIRE 7 false false false false false false Procedures for monitoring grant funds outside of the U.S. Schedule F, Part I, Line 2 THE ORGANIZATION HAS PROCEDURES IN PLACE TO MONITOR THE SCIENTIFIC PROGRESS AND FINANCIAL ASPECTS OF GRANTS AWARDED TO ENTITITES OUTSIDE OF THE UNITED STATES. THE ORGANIZATION FOLLOWS THE U.S. DEPARTMENT OF TREASURY ANTI-TERRORIST FINANCING VOLUNTARY 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 EXPENDITURE. 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 GRANT IN THE MIDDLE EAST / NORTH AFRICA REGION WAS MADE TO HEBREW UNIVERSITY OF JERUSALEM, A UNIVERSITY IN ISRAEL. true Advocate Hope Children's Hospital 4440 West 95th Street Oak Lawn IL 60453 362169147 501(C)(3) 43631 CF CARE CENTER Albany Medical College Elsmere A-107 Albany NY 12208 141338310 501(C)(3) 94700 CF CARE CENTER Alfred I DuPont Institute of the Nemours Foundati 1600 Rockland Road Wilmington DE 19899 590634433 501(C)(3) 205550 CF CARE CENTER All Children's Hospital Dept 9010 PO Box 269 St Petersburg FL 33731 590683252 501(C)(3) 81820 CF CARE CENTER Ann and Robert H Lurie Children's Hospital of Chi 2300 Childrens Plaza - Box 205 PO Box 31020 Chicago IL 60614 362170833 501(C)(3) 124589 CF CARE CENTER Ann and Robert H Lurie Children's Hospital of Chi 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501(C)(3) 96315 RESEARCH Ann and Robert H Lurie Children's Hospital of Chi 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501(C)(3) 52250 TRAINING Ann and Robert H Lurie Children's Hospital of Chi 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501(C)(3) 21600 QUALITY IMPROVEMENT Arizona Board of Regents University of Arizona Sponsored Projects Services Tucson AZ 857223308 742652689 501(C)(3) 56120 CF CARE CENTER Arkansas Children's Hospital Research Institute I 800 Marshall Street 888 N Euclid Room 510 Little Rock AR 72202 710694931 501(C)(3) 67360 CF CARE CENTER Asthma and Allergy Specialists PA 411 Billings Road Slot 512-17 Charlotte NC 28211 561913043 CORP 34760 CF CARE CENTER Atlantic Health System 100 Madison Avenue Suite 104 Morristown NJ 07962 521958352 501(C)(3) 69900 CF CARE CENTER Baylor College of Medicine PO Box 1 Houston TX 77212 741613878 501(C)(3) 235170 CF CARE CENTER Baystate Medical Center (95-196) 759 Chestnut Street Springfield MA 01199 042790311 501(C)(3) 29910 CF CARE CENTER Beth Israel Medical Center Office of Grants Contracts New York NY 10038 135564934 501(C)(3) 74700 CF CARE CENTER Billings Clinic 2800 10th Avenue North 160 Water Street 24th Floor Billings MT 59107 810231784 501(C)(3) 35010 CF CARE CENTER Board of Regents of the University of Wisconsin Sy 750 University Avenue Madison WI 53706 396006492 501(C)(3) 141912 CF CARE CENTER Board of Regents of the University of Wisconsin Sy 750 University Avenue Madison WI 53706 396006492 501(C)(3) 43200 PILOT STUDIES Board of Regents of the University of Wisconsin Sy 750 University Avenue Madison WI 53706 396006492 501(C)(3) 14629 QUALITY IMPROVEMENT Board of Trustees of Southern Illinois University Division of Pulmonary Medicine Springfield IL 62794 376005961 501(C)(3) 6350 CF CARE CENTER Board of Trustees of the Leland Stanford Junior Un Stanford University 651 Serra Street Suite 220 Stanford CA 943056215 941156365 501(C)(3) 149690 CF CARE CENTER Board of Trustees of the Leland Stanford Junior Un Stanford University 651 serra st suite 220 Stanford CA 943056215 941156365 501(C)(3) 97200 RESEARCH Board of Trustees of the Leland Stanford Junior Un Stanford University 651 serra st suite 220 Stanford CA 943056215 941156365 501(C)(3) 43600 RESEARCH STUDIES California Pacific Medical Center Research Institu 2200 Webster Street Room 405 651 Serra Street Suite 220 San Francisco CA 94115 940562680 501(C)(3) 15460 CF CARE CENTER California State University Los Angeles Universi 5151 State University Drive GE314 Los Angeles CA 90032 954016653 501(C)(3) 43200 PILOT STUDIES CAMC Health Education and Research Institute PO Box 765 Charleston WV 25323 550753754 501(C)(3) 20690 CF CARE CENTER Carle Foundation Hospital 611 W Park Street Urbana IL 61801 371119538 501(C)(3) 12755 CF CARE CENTER Case Western Reserve University 10900 Euclid Avenue Cleveland OH 441067037 341018992 501(C)(3) 349281 RESEARCH CENTERS Case Western Reserve University 10900 Euclid Avenue Attn Deborah Elam Cleveland OH 441067037 341018992 501(C)(3) 97200 RESEARCH Case Western Reserve University 10900 Euclid Avenue Attn Deborah Elam Cleveland OH 441067037 341018992 501(C)(3) 68250 TRAINING Central Florida Pulmonary Group 326 North Mills Avenue Attn Deborah Elam Orlando FL 32803 591760017 CORP 44650 CF CARE CENTER Children's & Women's Physicians of Westchester Pediatric Pulmonology Valhalla NY 10595 133956599 LLP 70390 CF CARE CENTER Children's & Women's Physicians of Westchester Pediatric Pulmonology Munger Pavilion Room 106 Valhalla NY 10595 133956599 LLP 27000 ADULT CARE Children's Health Care 2525 Chicago Avenue SO Munger Pavilion Room 106 Minneapolis MN 54040 411754276 501(C)(3) 16200 QUALITY IMPROVEMENT Children's Healthcare of Atlanta 1001 Johnson Ferry Road North 32-2210 Atlanta GA 30342 582367819 501(C)(3) 69180 CF CARE CENTER Children's Hospital & Research Center at Oakland 747 52nd Street Oakland CA 94609 940382330 501(C)(3) 39110 CF CARE CENTER Children's Hospital Central California 9300 Valley Childrens Place Madera CA 93638 941294954 501(C)(3) 64100 CF CARE CENTER Children's Hospital Colorado formerly The Childrens Hospital 13123 East 16th Ave Aurora CO 80045 840166760 501(C)(3) 180440 CF CARE CENTER Children's Hospital Corporation 300 Longwood Ave 13123 East 16th Ave Boston MA 021155737 042774441 501(C)(3) 259200 CF CARE CENTER Children's Hospital Corporation 300 Longwood Ave Boston MA 021155737 042774441 501(C)(3) 100250 TRAINING Children's Hospital Corporation 300 Longwood Ave Boston MA 021155737 042774441 501(C)(3) 45800 RESEARCH STUDIES Children's Hospital Medical Center Cincinnati Childrens Hospital Med research accounting Cincinnati OH 45229 310833936 501(C)(3) 377328 RESEARCH CENTERS Children's Hospital Medical Center Cincinnati Childrens Hospital Med Research Accounting Cincinnati OH 45229 310833936 501(C)(3) 113020 CF CARE CENTER Children's Hospital Medical Center Cincinnati Childrens Hospital Med Research Accounting Cincinnati OH 45229 310833936 501(C)(3) 97750 TRAINING Children's Hospital Medical Center Akron One Perkins Square Research Accounting Akron OH 443081062 340714357 501(C)(3) 114880 CF CARE CENTER Children's Hospital of Michigan 3663 Woodward Ave S Ste 200 Detroit MI 48201 381357994 501(C)(3) 54309 CF CARE CENTER Children's Hospital of Orange County PO Box 5700 Orange CA 926135700 952321786 501(C)(3) 43350 CF CARE CENTER Children's Hospital of Pittsburgh 3705 Fifth Avenue Pittsburgh PA 15213 250402510 501(C)(3) 211260 CF CARE CENTER Children's Hospital of Pittsburgh 3705 Fifth Avenue Pittsburgh PA 15213 250402510 501(C)(3) 49750 TRAINING Children's Hospital Los Angeles Research Institute Los Angeles CA 90027 951690977 501(C)(3) 71190 CF CARE CENTER Children's Lung Specialists 3838 Meadows Lane 4650 Sunset Blvd Las Vegas NV 89107 880271963 501(C)(3) 78020 CF CARE CENTER Children's Medical Center One Childrens Plaza Dayton OH 454041815 310672132 501(C)(3) 78950 CF CARE CENTER Children's Mercy Hospital 2401 Gillham Road Kansas City MO 64108 440605373 501(C)(3) 109540 CF CARE CENTER Children's National Medical Center 111 Michigan Avenue NW Washington DC 20010 521654453 501(C)(3) 81970 CF CARE CENTER Children's Research Institute Childrens National Medical Center Washington DC 20010 521654453 501(C)(3) 75000 RESEARCH Children's Specialty Group PLLC 811 Redgate Ave 111 Michigan Avenue NW Norfolk VA 23507 541871633 501(C)(3) 70820 CF CARE CENTER Christus Santa Rosa Healthcare 333 North Santa Rosa San Antonio TX 78207 741109665 501(C)(3) 86340 CF CARE CENTER Colorado State University Cashier's Office Sponsored Programs Fort Collins CO 805232002 846000545 501(C)(3) 42946 PILOT STUDIES Connecticut Children's Medical Center 282 Washington Street Campus Delivery Box 2002 Hartford CT 06106 060646755 501(C)(3) 43420 CF CARE CENTER Cook Children's Medical Center CF Center 801 Seventh Avenue Ft Worth TX 76104 752051646 501(C)(3) 108820 CF CARE CENTER Daughters of Charity Health Services of Austin 4900 Mueller Blvd Austin TX 78723 741109643 501(C)(3) 73090 CF CARE CENTER Duke University Office of Sponsored Programs Durham NC 27710 560532129 501(C)(3) 60330 CF CARE CENTER East Tennessee Children's Hospital Association I 2100 Clinch Avenue 310 Box 104025 Knoxville TN 37916 626002604 501(C)(3) 72630 CF CARE CENTER Eastern Maine Medical Center 417 State Street Bangor ME 04401 010211501 501(C)(3) 25670 CF CARE CENTER Emory University 1380 South Oxford Road Suite 305 Atlanta GA 30322 580566256 501(C)(3) 206000 CF CARE CENTER Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501(C)(3) 100000 RESEARCH Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501(C)(3) 48000 TRAINING Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501(C)(3) 27000 ADULT CARE Erlanger Health System 975 East Third Street Chattanooga TN 37403 626000101 501(C)(3) 33780 CF CARE CENTER Faculty Physicians & Surgeons of LLUSM Coleman Pavilion Loma Linda CA 92350 330672915 501(C)(3) 46090 CF CARE CENTER Fairfax Neonatal Associates PC dbaPediatric Lung 2730-B Prosperity Avenue PO Box 2000 Fairfax VA 22031 541110106 CORP 18772 CF CARE CENTER Fletcher Allen Health Care 111 Colchester Ave Burlington VT 05401 030219309 501(C)(3) 101170 CF CARE CENTER Geisinger Medical Center Pediatric Allergy Immunology Pul Danville PA 17822 236291113 501(C)(3) 51780 CF CARE CENTER Georgia Health Sciences University 1120 15th Street 100 N Academy Drive Augusta GA 309128300 586002053 501(C)(3) 87770 CF CARE CENTER Greenville Hospital System 701 Grove Road Greenville SC 29605 576007863 501(C)(3) 27870 CF CARE CENTER Gundersen Lutheran Medical Foundation 1900 South Avenue La Crosse WI 54601 391249705 501(C)(3) 14849 CF CARE CENTER Hartford Hospital Department of Medicine Hartford CT 06102 060646668 501(C)(3) 38190 CF CARE CENTER Henry M Jackson Foundation for the advancement of 1404 Rockville Pike Suite 600 80 Seymour Street Rockville MD 20852 521317896 501(C)(3) 97200 RESEARCH Henry M Jackson Foundation for the advancement of 1404 Rockville Pike Suite 600 Rockville MD 20852 521317896 501(C)(3) 38505 CF CARE CENTER Iowa Health Foundation 1440 Ingersoll Avenue Des Moines IA 50309 421467682 501(C)(3) 46310 CF CARE CENTER Kaiser Foundation Hospitals Center for Health Res 3800 North Interstate Avenue Portland OR 97227 911105628 501(C)(3) 29736 CF CARE CENTER Kaiser Foundation Research Institute 1800 Harrison Street OAKLAND CA 94612 941105628 501(C)(3) 130870 CF CARE CENTER Kala Pharmaceuticals 135 Beaver St 16th floor Waltham MA 02452 270604595 CORP 42672 PILOT STUDIES Kaleida Health 219 Bryant Street Ste 309 Buffalo NY 14209 161533232 501(C)(3) 88150 CF CARE CENTER Landon Pediatric Foundation 3291 Loma Vista Road Ventura CA 93003 931097216 501(C)(3) 27550 CF CARE CENTER Lehigh Valley Hospital Pediatric Specialty Center Bethlehem PA 18017 231689692 501(C)(3) 8736 CF CARE CENTER Long Island Jewish Medical Center Finance Department 2545 Schoenersville Road Westbury NY 11590 112241326 501(C)(3) 102320 CF CARE CENTER Loyola University of Chicago 2160 S First Avenue 972 Brushhollow Road Maywood IL 60153 361408475 501(C)(3) 37700 CF CARE CENTER LSUMC - Shreveport P O Box 33932 Shreveport LA 71130 720702002 501(C)(3) 76140 CF CARE CENTER Lutheran Hospital of Indiana 7950 West Jefferson Boulevard FT Wayne IN 46804 351963748 CORP 27630 CF CARE CENTER Maine Medical Center 22 Bramhall Street Portland ME 04102 010238552 501(C)(3) 90650 CF CARE CENTER Marshall University Research Corporation 401 11th Street Suite 1400 Huntington WV 25701 550683361 501(C)(3) 97200 RESEARCH Marshfield Clinic Research Foundation 1000 North Oak Avenue Marshfield WI 54449 390452970 501(C)(3) 15599 CF CARE CENTER Mary Bridge Children's Foundation 311 South L Street Tacoma WA 98405 943030039 501(C)(3) 36130 CF CARE CENTER Medical University of South Carolina PO Box 997 Mailstop B1-OC Charleston SC 29402 576000722 501(C)(3) 83230 CF CARE CENTER Medical University of South Carolina PO Box 997 Charleston SC 29402 576000722 501(C)(3) 43200 PILOT STUDIES Memorial Medical Center Foundation 2801 Atlantic Avenue Long Beach CA 908011428 956105984 501(C)(3) 104140 CF CARE CENTER Miami Children's Hospital MOB 203 PO Box 1428 Miami FL 33155 590638499 501(C)(3) 25730 CF CARE CENTER Michigan State University 301 Administration Bldg 3200 SW 60th Court East Lansing MI 488241046 386005984 501(C)(3) 48430 CF CARE CENTER Mission Healthcare Foundation Inc 980 Hendersonville Road Asheville NC 28803 561881331 501(C)(3) 17592 CF CARE CENTER Monmouth Medical Center Foundation 300 Second Avenue Suite C Long Branch NJ 07740 222456079 501(C)(3) 59820 CF CARE CENTER Monmouth Medical Center Foundation 300 Second Avenue Long Branch NJ 07740 222456079 501(C)(3) 27000 QUALITY IMPROVEMENT Mount Sinai School of Medicine One Gustave L Levy Place New York NY 10029 136171197 501(C)(3) 8550 CF CARE CENTER National Jewish Medical and Research Center 1400 Jackson Street Box 3500 Denver CO 80206 742044647 501(C)(3) 111310 CF CARE CENTER National Jewish Medical and Research Center 1400 Jackson Street Denver CO 80206 742044647 501(C)(3) 96821 RESEARCH Nemours Children's Clinic Jacksonville 807 Nira Street Jacksonville FL 32207 590634433 501(C)(3) 27000 QUALITY IMPROVEMENT New York Medical College 40 Sunshine Cottage Road Valhalla NY 10595 131099420 501(C)(3) 27000 QUALITY IMPROVEMENT New York University School of Medicine 550 First Avenue New York NY 10016 135562308 501(C)(3) 8000 CF CARE CENTER North Suburban Pulmonary Research and Education 8780 W Gold Niles IL 60714 364393617 501(C)(3) 8000 CF CARE CENTER Northwest Permanente PC 500 NE Multnomah Street Suite 102 Portland OR 97232 930698548 CORP 27000 ADULT CARE Northwestern Medical Faculty Foundation Financial Services Suite 100 Chicago IL 60611 363097297 501(C)(3) 8000 CF CARE CENTER Northwestern University 750 N Lake Shore Drive 680 N Lake Shore Dr Suite 1118 Chicago IL 606113008 362167817 501(C)(3) 27000 ADULT CARE Oregon Health & Science University Sponsored Projects Administration O Rubloff 7th Floor Portland OR 97239 237083114 501(C)(3) 152204 CF CARE CENTER Oregon Health & Science University Sponsored Projects Administration O 0690 SW Bancroft Street Portland OR 97239 237083114 501(C)(3) 45800 RESEARCH STUDIES Oregon Health & Science University Sponsored Projects Administration O 0690 SW Bancroft Street Portland OR 97239 237083114 501(C)(3) 43200 PILOT STUDIES Orlando Health Foundation 3160 Southgate Commerce Blvd 0690 SW Bancroft Street Orlando FL 32806 592244943 501(C)(3) 29010 CF CARE CENTER Pediatric Specialty Saint Barnabas Medical Center Suite 50 Livingston NJ 07039 221494440 501(C)(3) 5840 CF CARE CENTER Pennsylvania State University College of Medicine Pediatric Pulmonary Division Hershey PA 17033 246000376 501(C)(3) 109700 CF CARE CENTER Philadelphia Health & Education Corp (Drexel Univ 3201 Arch Street Office of Research Affairs H138 Philadelphia PA 19104 232979433 501(C)(3) 81780 CF CARE CENTER Philadelphia Health & Education Corp (Drexel Univ 3201 Arch Street Suite 420 Philadelphia PA 19104 232979433 501(C)(3) 27000 ADULT CARE Phoenix Children's Hospital 1300 North 12th Street Suite 420 Phoenix AZ 85006 860422559 501(C)(3) 122740 CF CARE CENTER Providence Alaska Medical Center 3200 Providence Drive Anchorage AK 995196604 920016429 501(C)(3) 29280 CF CARE CENTER Providence Physician Service 101 W 8th Ave PO Box 196604 Spokane WA 99204 911216033 corp 55690 CF CARE CENTER Regents of the University of Colorado Grants Contracts Aurora CO 800450508 846000555 501(C)(3) 242894 TRAINING Regents of the University of Colorado Grants Contracts F428 Fitzsimons Building 500 Aurora CO 800450508 846000555 501(C)(3) 21600 QUALITY IMPROVEMENT Renown Regional Medical Center Children's Hospital 1155 Mill Street F428 Fitzsimons Building 500 Reno NV 89503 880213754 501(C)(3) 17630 CF CARE CENTER Rhode Island Hospital 593 Eddy Street Providence RI 02903 050258954 501(C)(3) 54850 CF CARE CENTER Rosalind Franklin University of Medicine and Scien 3333 Green Bay Road North Chicago IL 60064 362181973 501(C)(3) 191166 RESEARCH Rush University Medical Center 1725 West Harrison Suite 718 Chicago IL 60612 362174823 501(C)(3) 44490 CF CARE CENTER Saint Francis Medical Center 530 NE Glen Oak Avenue Peoria IL 61637 370662569 501(C)(3) 46810 CF CARE CENTER Saint Joseph's Hospital and Medical Center 703 Main Street Paterson NJ 07503 221487602 501(C)(3) 17490 CF CARE CENTER Samaritan Medical Center Child Adolescent Health Services Watertown NY 13601 150533577 501(C)(3) 8720 CF CARE CENTER Sanford Children's Specialty Clinic 1305 W 18th Street 513 Washington Street Sioux Falls SD 571175039 460447693 501(C)(3) 52030 CF CARE CENTER Scott & White Memorial Hospital 2401 South 31st Street Temple TX 76508 741166904 501(C)(3) 12580 CF CARE CENTER Seattle Children's Hospital Foundation 6901 Sand Point Way NE Seattle WA 981050371 910564748 501(C)(3) 99100 CF CARE CENTER South Broward Hospital District Joe DiMaggios Childrens Hospital Hollywood FL 33321 596014973 501(C)(3) 42530 CF CARE CENTER Spectrum Health Foundation Downtown Campus Cystic Fibrosis Clinic Grand Rapids MI 49503 382752328 501(C)(3) 123470 CF CARE CENTER St Alexius Medical Center PO Box 5510 100 Michigan Street NE MC 004 Bismarck ND 585065510 450226711 501(C)(3) 29810 CF CARE CENTER St Joseph's Regional Medical Center Inc 611 East Cedar Street Mishawaka IN 465451468 351568821 501(C)(3) 25650 CF CARE CENTER St Louis University 3500 Lindell Blvd Suite 405 St Louis MO 63103 430654872 501(C)(3) 94750 CF CARE CENTER St Luke's Regional Medical Center 100 East Idaho Boise ID 83712 820161600 501(C)(3) 44760 CF CARE CENTER Sutter Medical Center Sacramento 5609 J Street Suite C Suite 200 Sacramento CA 95819 941156621 501(C)(3) 48940 CF CARE CENTER Tenet St Mary's Inc Cystic Fibrosis Center PO Box 24620 West Palm Beach FL 33407 752932830 corp 40140 CF CARE CENTER Texas Tech University Health Sciences Center 3601 4th Street 901 45th Street Lubbock TX 79430 752668014 501(C)(3) 9870 CF CARE CENTER The Children's Hospital of Philadelphia 3516 Civic Center Blvd Mail Stop 6591 Philadelphia PA 191044318 231352166 501(C)(3) 125044 CF CARE CENTER The Children's Hospital of Philadelphia 3516 Civic Center Blvd Philadelphia PA 191044318 231352166 501(C)(3) 68250 TRAINING The Curators of the University of Missouri Office of Sponsored Program Adminis Columbia MO 65211 436003859 501(C)(3) 173151 RESEARCH The Curators of the University of Missouri Office of Sponsored Program Adminis 310 Jesse Hall Columbia MO 65211 436003859 501(C)(3) 67010 CF CARE CENTER The Feinstein Institute for Medical Research 350 Community Drive 310 Jesse Hall Manhasset NY 11030 112673595 501(C)(3) 27000 ADULT CARE The General Hospital Corporation (Massachusetts Ge Mass General Research Finance Boston MA 02114 042697983 501(C)(3) 107999 PILOT STUDIES The General Hospital Corporation (Massachusetts Ge Mass General Research Finance PO Box 414876 Boston MA 02114 042697983 501(C)(3) 168500 TRAINING The General Hospital Corporation (Massachusetts Ge Mass General Research Finance PO Box 414876 Boston MA 02114 042697983 501(C)(3) 90000 RESEARCH The General Hospital Corporation (Massachusetts Ge Mass General Research Finance PO Box 414876 Boston MA 02114 042697983 501(C)(3) 89660 CF CARE CENTER The General Hospital Corporation (Massachusetts Ge Mass General Research Finance PO Box 414876 Boston MA 02114 042697983 501(C)(3) 42500 RESEARCH STUDIES The Hitchcock Foundation One Medical Center Drive PO Box 414876 Lebanon NH 03756 020222139 501(C)(3) 93510 CF CARE CENTER The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501(C)(3) 228160 CF CARE CENTER The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501(C)(3) 49750 TRAINING The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501(C)(3) 43197 PILOT STUDIES The Medical College of Wisconsin 8701 Watertown Polk Rd Milwaukee WI 53226 390806261 501(C)(3) 131390 CF CARE CENTER The Medical College of Wisconsin 8701 Watertown Pike Rd Milwaukee WI 53226 390806261 501(C)(3) 27000 QUALITY IMPROVEMENT The Ohio State University 1960 Kenny Road Columbus OH 43210 316025986 501(C)(3) 43462 RESEARCH STUDIES The President & Fellows of Harvard College 25 Shattuck Street Boston MA 02115 042103580 501(C)(3) 97200 RESEARCH The Rector and Visitors of the University of Virgi PO Box 400195 Charlottesville VA 229044195 546001796 501(C)(3) 102058 CF CARE CENTER The Rector and Visitors of the University of Virgi PO Box 400195 Office of Sponsored Programs Charlottesville VA 229044195 546001796 501(C)(3) 45800 RESEARCH STUDIES The Rector and Visitors of the University of Virgi PO Box 400195 Office of Sponsored Programs Charlottesville VA 229044195 546001796 501(C)(3) 43200 RESEARCH The Rector and Visitors of the University of Virgi PO Box 400195 Office of Sponsored Programs Charlottesville VA 229044195 546001796 501(C)(3) 43200 PILOT STUDIES The Rector and Visitors of the University of Virgi PO Box 400195 Office of Sponsored Programs Charlottesville VA 229044195 546001796 501(C)(3) 27000 ADULT CARE The Rector and Visitors of the University of Virgi PO Box 400195 Office of Sponsored Programs Charlottesville VA 229044195 546001796 501(C)(3) 21196 QUALITY IMPROVEMENT The Regents of the University of California Davis Cashiers Office 1200 Dutton Hall Office of Sponsored Programs Davis CA 95616 946036494 501(C)(3) 69290 CF CARE CENTER The Regents of the University of California San D Office of Post Award Financial Serv One Shields Avenue La Jolla CA 920930954 956006144 501(C)(3) 118580 CF CARE CENTER The Regents of the University of California San D Office of Post Award Financial Serv 9500 Gilman Drive Dept 0934 La Jolla CA 920930954 956006144 501(C)(3) 43200 PILOT STUDIES The Regents of the University of California San D Office of Post Award Financial Serv 9500 Gilman Drive Dept 0934 La Jolla CA 920930954 956006144 501(C)(3) 27000 ADULT CARE The Regents of the University of California San F UCSF Office of Sponsored Research 9500 Gilman Drive Dept 0934 San Francisco CA 941430962 946036493 501(C)(3) 460000 RESEARCH CENTERS The Regents of the University of California San F UCSF Office of Sponsored Research 3333 California Street Suite 315 San Francisco CA 941430962 946036493 501(C)(3) 70750 CF CARE CENTER The Regents of the University of California San F UCSF Office of Sponsored Research 3333 California Street Suite 315 San Francisco CA 941430962 946036493 501(C)(3) 48000 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 501(C)(3) 27000 ADULT CARE The Regents of the University of Michigan 3003 South State Street Room 3089 3333 California Street Suite 315 Ann Arbor MI 481091274 386006309 501(C)(3) 205160 CF CARE CENTER The Regents of the University of Michigan 3003 South State Street Room 3089 Ann Arbor MI 481091274 386006309 501(C)(3) 75000 RESEARCH The Regents of the University of Michigan 3003 South State Street Room 3089 Ann Arbor MI 481091274 386006309 501(C)(3) 43200 QUALITY IMPROVEMENT The Regents of the University of Minnesota Sponsored Projects Administration Minneapolis MN 554552070 416007513 501(C)(3) 319500 CF CARE CENTER The Research Institute at Nationwide Children's H Huntington National Bank 200 Oak St SE Columbus OH 43260 316056230 501(C)(3) 202200 CF CARE CENTER The Research Institute at Nationwide Children's H Huntington National Bank Dept 4656 / Ref 413407 Columbus OH 43260 316056230 501(C)(3) 27000 ADULT CARE The Research Foundation of SUNY P O Box 9 Dept 4656 / Ref 413407 Albany NY 122010009 141368361 501(C)(3) 144050 CF CARE CENTER The Tampa General Hospital Foundation PO Box 1289 Tampa FL 33601 237354477 501(C)(3) 59930 CF CARE CENTER The Trustees of Columbia University in the City of 351 Engineering Terrace New York NY 10027 135598093 501(C)(3) 131640 CF CARE CENTER The Trustees of Columbia University in the City of 351 Engineering Terrace New York NY 10027 135598093 501(C)(3) 49750 TRAINING The University of Alabama at Birmingham 1530 3rd Ave S THT422 Birmingham AL 352940006 636005396 501(C)(3) 500000 RESEARCH CENTERS The University of Alabama at Birmingham 1530 3rd Ave S THT422 Birmingham AL 352940006 636005396 501(C)(3) 90909 RESEARCH The University of Chicago 5801 S Ellis Avenue Chicago IL 60637 362177139 501(C)(3) 75000 RESEARCH The University of Chicago 5801 S Ellis Avenue Chicago IL 60637 362177139 501(C)(3) 50260 CF CARE CENTER The University of North Carolina at Chapel Hill North Carolina State Treasurer Chapel Hill NC 275991350 566001393 501(C)(3) 460000 RESEARCH CENTERS The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501(C)(3) 252598 CF CARE CENTER The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501(C)(3) 474049 RESEARCH The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501(C)(3) 147500 TRAINING The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501(C)(3) 132681 PILOT STUDIES The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501(C)(3) 42500 RESEARCH STUDIES The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501(C)(3) 27000 QUALITY IMPROVEMENT The University of Texas at Austin P O Box 7726 Office of Sponsored Research Austin TX 787137726 746000203 501(C)(3) 97200 RESEARCH The University of Vermont and State Agricultural C 85 So Prospect Street Burlington VT 054050160 030179440 501(C)(3) 42500 RESEARCH STUDIES Toledo Children's Hospital 2142 N Cove Blvd Toledo OH 43606 344428256 501(C)(3) 86480 CF CARE CENTER Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501(C)(3) 346667 RESEARCH CENTERS Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501(C)(3) 301474 QUALITY IMPROVEMENT Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501(C)(3) 27000 ADULT CARE Trustees of Indiana University Financial Management Services Bloomington IN 462666057 356001673 501(C)(3) 199318 CF CARE CENTER Trustees of Indiana University Financial Management Services PO Box 66057 Bloomington IN 462666057 356001673 501(C)(3) 68250 TRAINING Trustees of Indiana University Financial Management Services PO Box 66057 Bloomington IN 462666057 356001673 501(C)(3) 19994 QUALITY IMPROVEMENT Trustees of the University of Pennsylvania 133 South 36th Street Mezzanine PO Box 66057 Philadelphia PA 191043246 231352685 501(C)(3) 97200 RESEARCH Trustees of the University of Pennsylvania 133 South 36th Street Mezzanine Philadelphia PA 191043246 231352685 501(C)(3) 75048 RESEARCH CENTER Trustees of the University of Pennsylvania 133 South 36th Street Mezzanine Philadelphia PA 191043246 231352685 501(C)(3) 43200 PILOT STUDIES Trustees of the University of Pennsylvania on beha 3451 Walnut Street Philadelphia PA 19104 231352685 501(C)(3) 84550 CF CARE CENTER Tulane University Medical School 6401 Freret St Franklin Bldg P-221 New Orleans LA 70118 720423889 501(C)(3) 103940 CF CARE CENTER Tulane University Medical School 6401 Freret St New Orleans LA 70118 720423889 501(C)(3) 27000 ADULT CARE UMDNJ- Robert Wood Johnson Medical School UMDNJ New Brunswick NJ 08903 221775306 501(C)(3) 62660 CF CARE CENTER University of Arkansas for Medical Sciences 4301 West Markham Street 1 Robert Wood Johnson Place Little Rock AR 72205 716046242 501(C)(3) 49810 CF CARE CENTER University of Cincinnati Physicians Company 231 Albert Sabin Way Mail Slot 555 Cincinnati OH 452670564 311405915 501(C)(3) 50510 CF CARE CENTER University of Florida PO Box 115500 MSB 60048 Gainesville FL 32611 596002052 501(C)(3) 82167 CF CARE CENTER University of Florida PO Box 115500 Gainesville FL 32611 596002052 501(C)(3) 27000 ADULT CARE University of Iowa Grant Accounting Office Iowa City IA 52242 426004813 501(C)(3) 500000 RESEARCH CENTERS University of Iowa Grant Accounting Office B 5 Jessup Hall Iowa City IA 52242 426004813 501(C)(3) 118410 CF CARE CENTER University of Iowa Grant Accounting Office B 5 Jessup Hall Iowa City IA 52242 426004813 501(C)(3) 97200 RESEARCH University of Kansas Medical Center Research Insti 3901 Rainbow Boulevard MSN 1039 B 5 Jessup Hall Kansas City KS 661032937 481108830 501(C)(3) 75940 CF CARE CENTER University of Kansas Medical Center Research Insti 3901 Rainbow Boulevard MSN 1039 Kansas City KS 661032937 481108830 501(C)(3) 27000 ADULT CARE University of Kentucky Research Foundation Kentucky CF Clinic J424 Lexington KY 405360284 616033693 501(C)(3) 115010 CF CARE CENTER University of Louisville Research Foundation Inc Office of Grants Management 740 South Limestone Louisville KY 40292 611029626 501(C)(3) 88820 CF CARE CENTER University of Maryland - College Park 3112 Lee Building Jouett Hall Belknap Campus College Park MD 207425141 526002033 501(C)(3) 43200 PILOT STUDIES University of Massachusetts Medical Center 55 Lake Avenue Worcester MA 10655 043167352 501(C)(3) 75000 RESEARCH University of Massachusetts Medical Center 55 Lake Avenue Worcester MA 10655 043167352 501(C)(3) 69440 CF CARE CENTER University of Miami Pediatric/Pulmonary Division Miami FL 33137 590624458 501(C)(3) 61530 CF CARE CENTER University of Mississippi Medical Center 2500 North State Street 1601 NW 12th Avenue Jackson MS 392164505 646008520 501(C)(3) 54750 CF CARE CENTER University of Mississippi Medical Center 2500 North State Street Jackson MS 392164505 646008520 501(C)(3) 27000 ADULT CARE University of Montana - Missoula Office of Research Sponsored Prog Missoula MT 598124824 816001713 501(C)(3) 29037 RESEARCH STUDIES University of Nebraska Medical Center Service Building 202 University Hall Omaha NE 681987835 470049123 501(C)(3) 132230 CF CARE CENTER University of New Mexico Health Sciences Center Controllers Office 985100 Nebraska Medical Center Albuquerque NM 871315041 856000642 501(C)(3) 57233 CF CARE CENTER University of New Mexico Health Sciences Center Controllers Office Health Sciences and Services Bldg Albuquerque NM 871315041 856000642 501(C)(3) 27000 ADULT CARE University of Oklahoma Health Sciences Center PO Box 26901 Health Sciences and Services Bldg Oklahoma City OK 73190 736017987 501(C)(3) 112250 CF CARE CENTER University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501(C)(3) 459431 RESEARCH CENTERS University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501(C)(3) 97200 RESEARCH University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501(C)(3) 91600 RESEARCH STUDIES University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501(C)(3) 49750 TRAINING University of Rochester 1325 Mt Hope Avenue Rochester NY 14642 160743209 501(C)(3) 88090 CF CARE CENTER University of Rochester 1325 Mt Hope Avenue Suite 260 Rochester NY 14642 160743209 501(C)(3) 21600 QUALITY IMPROVEMENT University of South Carolina Research Foundation 901 Sumter Street Suite 260 Columbia SC 29208 570967350 501(C)(3) 39000 CF CARE CENTER University of South Florida Department of Pediatrics Suite 501 Tampa FL 33606 593102112 501(C)(3) 27370 CF CARE CENTER University of Southern California USC Contracts and Grants 17 Davis Boulevard Suite 200 Los Angeles CA 900339002 951642394 501(C)(3) 82750 CF CARE CENTER University of Southern California USC Contracts and Grants 1540 Alcazar Street Los Angeles CA 900339002 951642394 501(C)(3) 27000 ADULT CARE University of Tennessee 62 S Dunlap 1540 Alcazar Street Memphis TN 38163 626001636 501(C)(3) 79200 CF CARE CENTER University of Tennessee 62 S Dunlap Memphis TN 38163 626001636 501(C)(3) 75000 RESEARCH University of Tennessee Medical Center 1940 Alcoa Hwy Knoxville TN 37920 311626179 501(C)(3) 19040 CF CARE CENTER University of Texas Health Center at Tyler 11937 US Hwy 271 Suite E-110 Tyler TX 75708 756001354 501(C)(3) 33860 CF CARE CENTER University of Texas Health Science Center Houston P O Box 20036 Houston TX 772250036 741761309 501(C)(3) 97200 RESEARCH University of Toledo - Health Science Campus Research Sponsored Programs Toledo OH 436142595 346401483 501(C)(3) 75000 RESEARCH University of Utah 406 Park Bldg 3000 Arlington Avenue Salt Lake City UT 84112 876000525 501(C)(3) 207430 CF CARE CENTER University of Utah 406 Park Bldg Salt Lake City UT 84112 876000525 501(C)(3) 36922 PILOT STUDIES University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 501(C)(3) 500000 RESEARCH CENTERS University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 501(C)(3) 267900 RESEARCH University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 501(C)(3) 80950 CF CARE CENTER University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 501(C)(3) 43200 PILOT STUDIES University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 501(C)(3) 41574 RESEARCH STUDIES UT Southwestern Medical Center at Dallas 5323 Harry Hines Blvd Dallas TX 753909040 756002868 501(C)(3) 187620 CF CARE CENTER UT Southwestern Medical Center at Dallas 5323 Harry Hines Blvd Dallas TX 753909040 756002868 501(C)(3) 43200 PILOT STUDIES Vanderbilt University PO Box 30195 Nashville TN 372410195 620476822 501(C)(3) 179186 CF CARE CENTER Via Christi Regional Medical Center CF Clinic 3311 East Murdock Street Wichita KS 67218 481172106 501(C)(3) 49150 CF CARE CENTER Virginia Commonwealth University Box 2506 - VCU Station Richmond VA 232842506 546001758 501(C)(3) 54061 CF CARE CENTER Wake Forest University Health Sciences Medical Center Blvd WinstonSalem NC 271571064 223849199 501(C)(3) 46860 CF CARE CENTER Washington University Campus Box 1034 St Louis MO 631121408 430653611 501(C)(3) 219335 CF CARE CENTER Washington University Campus Box 1034 700 Rosedale Avenue St Louis MO 631121408 430653611 501(C)(3) 21600 QUALITY IMPROVEMENT Wayne State University Grants Contracts Office III 700 Rosedale Avenue Detroit MI 48201 386028425 501(C)(3) 45510 CF CARE CENTER West Virginia University Research Corporation West Virginia University Research and Sponsored Programs Morgantown WV 265066001 550665758 501(C)(3) 57900 CF CARE CENTER Yale University 47 College Street Suite 203 PO Box 6001 New Haven CT 065208047 060646973 501(C)(3) 68250 TRAINING Yale University 47 College Street Suite 203 New Haven CT 065208047 060646973 501(C)(3) 60420 CF CARE CENTER 175 9 PATIENT ASSISTANCE PROGRAM 958 1647530 FELLOWSHIPS 6 22890 PROCEDURES FOR MONITORING GRANT FUNDS INSIDE OF THE U.S. PART I, LINE 2 THE ORGANIZATION HAS PROCEDURES IN PLACE TO MONITOR THE SCIENTIFIC PROGRESS AND FINANCIAL ASPECTS OF GRANT FUNDS AWARDED TO ENTITIES INSIDE OF THE US. SPONSORED INSTITUTIONS ARE REQUIRED TO SUBMIT ANNUAL REPORTS OF EXPENDITURES AS WELL AS SCIENTIFIC PROGRESS REPORTS. SCIENTIFIC REPORTS ARE REVIEWED BY THE ORGANIZATION'S SCIENTIFIC STAFF TO ENSURE 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 INSTITUTIONS. X X X X X X false true false false false false false true false ROBERT J BEALL PHD 363683 183806 72046 35485 233832 110576 68745 21252 22675 0 760981 351119 131320 64680 C RICHARD MATTINGLY 376534 0 67369 0 22147 0 149819 0 19075 0 634944 0 PRESTON CAMPBELL MD 243354 125512 42187 20778 15891 5610 92725 33064 29840 0 423997 184964 VERA H TWIGG 272799 0 44485 0 18681 0 47143 0 30640 0 413748 0 DANIEL KLEIN 229958 0 60608 0 121377 0 30596 0 4999 0 447538 0 ANN PALMER 204225 0 17900 0 1933 0 28268 0 26840 0 279166 0 JAMES STONE 132186 0 92450 0 416 0 22665 0 7819 0 255536 0 DAVID MCLOUGHLIN 190981 47745 18782 4696 981 245 30596 0 27140 0 268480 52686 GREGORY AUGUST 189503 0 19142 0 411 0 26506 0 25640 0 261202 0 GLEN GOLDMARK 183846 0 19723 0 2612 0 25804 0 19675 0 251660 0 AMY DEMARIA 185835 0 18309 0 389 0 25265 0 8655 0 238453 0 SUPPLEMENTAL NONQUALIFIED RETIREMENT PLAN PART I, LINE 4B AND 7 Part I, Line 4b: Certain persons listed in Form 990, Part VII, Section A participate in a nonqualified deferred compensation plan, under which interests are forfeited by the participant if the participant voluntarily terminates employment prior to designated vesting date. Further information about the nonqualified deferred compensation plan in which those persons participate is provided in the additional information for Schedule J, Part II, below. Part I, Line 7: Several individuals listed in Form 990, Part VII, Section A, line 1a, (who are identified in Part II, below) participated in 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. COMPENSATION PART II Cystic Fibrosis Foundation - Headquarters. (A) Name: R. Beall, Ph.D.; (B)(i) Base Compensation: base salary - $348,608, 401(k) bonus - $15,075; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $72,046; (B)(iii) Other Reportable Compensation: health insurance benefit - $3,349, automobile allowance - $4,824, other benefits including taxable general organization group term life insurance premium - $17,703, SERP account that became vested, of which $131,320 was previously reported (3) - $207,956; (C) Deferred Compensation: retirement benefit (2) - $25,596, long-term incentive plan benefit (6) - $43,149; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $13,177, employee contribution to flexible spending account benefit - $4,500, employee contribution to general organization health plan benefit - $4,998 Cystic Fibrosis Foundation Therapeutics, Inc. EIN 91-2059167. (A) Name: R. Beall, Ph.D.; (B)(i) Base Compensation: base salary - $176,381, 401(k) bonus - $7,425; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $35,485; (B)(iii) Other Reportable Compensation: health insurance benefit - $1,649, automobile allowance - $2,376, other benefits including general organization group term life insurance premium - $4,125, SERP account that became vested, of which $64,680 was previously reported (3) - $102,426; (C) Deferred Compensation: long-term incentive plan benefit (6) - $21,252; (D) Nontaxable Benefits: $0 Cystic Fibrosis Foundation - Headquarters. (A) Name: P. Campbell, M.D.; (B)(i) Base Compensation: base salary - $243,354; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $42,187; (B)(iii) Other Reportable Compensation: other benefits including taxable general organization group term life insurance premium - $4,501, Section 457(b) Plan (5) - $11,390; (C) Deferred Compensation: retirement benefit (2) - $25,596, long-term incentive plan benefit (6) - $31,763, SERP (4) - $35,366; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $18,366, employee contribution to flexible spending account benefit - $4,200, employee contribution to general organization health plan benefit - $7,274 Cystic Fibrosis Foundation Therapeutics, Inc. EIN 91-2059167. (A) Name: P. Campbell, M.D.; (B)(i) Base Compensation: base salary - $125,512; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $20,778; (B)(iii) Other Reportable Compensation: Section 457(b) Plan (5) - $5,610; (C) Deferred Compensation: long-term incentive plan benefit (6) - $15,645, SERP (4) - $17,419; (D) Nontaxable Benefits: $0 Cystic Fibrosis Foundation - Headquarters. Name: (A) R. Mattingly; (B)(i) Base Compensation: base salary - $376,534; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $67,369; (B)(iii) Other Reportable Compensation: Section 457(b) Plan (5) - $17,000; other benefits including taxable general organization group term life insurance premium - $5,147; (C) Deferred Compensation: retirement benefit (2) - $25,596, long-term incentive plan benefit (6) - $47,982, SERP (4) - $76,241; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $13,177, employee contribution to flexible spending account benefit - $900, employee contribution to general organization health plan benefit - $4,998 Cystic Fibrosis Foundation - Headquarters. (A) Name: V. Twigg; (B)(i) Base Compensation: base salary - $272,799; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $44,485; (B)(iii) Other Reportable Compensation: taxable general organization group term life insurance premium - $1,681, Section 457(b) Plan (5) - $17,000; (C) Deferred Compensation: retirement benefit (2) - $25,596, long-term incentive plan benefit (6) - $19,926, SERP (4) - $ 1,621; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $18,366, employee contribution to flexible spending account benefit - $5,000, employee contribution to general organization health plan benefit - $7,274 Cystic Fibrosis Foundation - Headquarters. (A) Name: D. Klein; (B)(i) Base Compensation: base salary - $229,958; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $27,450 related to plan year 2011, $33,158 related to 2012 plan year; (B)(iii) Other Reportable Compensation: retention bonus (7) - $118,040; taxable general organization group term life insurance premium - $3,337; (C) Deferred Compensation: retirement benefit (2) - $25,596; SERP (4) - $5,000; (D) Nontaxable Benefits: employee contribution to flexible spending account benefit - $4,999 (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. (2) This is the employer contribution made under the Cystic Fibrosis Foundation 401(k) Plan for the 2012 Plan Year. (3) A. A portion of the total SERP account that became vested relates to employer contributions to the SERP that were earned by the participant and accrued during 2010 and 2011. As required, those SERP contributions from prior years were reported as "Retirement and other Deferred Compensation" on the applicable prior years' Form 990s and therefore (as required by the instructions) are double-reported here. The remaining portion of the total SERP account that became vested relates to employer contributions to the SERP that were earned by the participant during 2012. B. SERP interests would have been forfeited by the participant if the participant voluntarily terminated employment prior to December 31, 2012. 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 those arrangements 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. (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 number of years of service, depending on the participant). C. In the event of a CFF bankruptcy, participants are 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. For certain specified participants, an independent actuary developed the contribution formula pursuant to which SERP contribution amounts are determined. 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 $17,000). 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. Each year, a new three-year performance period begins. As required by the Form 990 instructions, the amounts reported on this Form 990 reflect an estimate of the portion of each award that the executive accrued under the Plan for performance in 2012 (i.e., with respect to the 2011-2013 and the 2012-2014 performance peri OTHER PROGRAM SERVICES PART III, LINE 4D 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 cystic fibrosis. Approximately 27,800 people with CF were served in 2012, including approximately 917 individuals who were newly diagnosed. REVIEW OF 990 BY GOVERNING BODY PART VI, SECTION B, LINE 11B (PAGE 6 CORE FORM) The Cystic Fibrosis Foundation Board of Trustees receives a draft of the Form 990 prior to its being filed, with sufficient time for review and comment allowed. The Compensation Committee of the Board of Trustees and the Foundation's ERISA attorneys review the executive compensation sections of the Form 990. The Audit Committee of the Board of Trustees also reviews the Form 990 as part of its chartered responsibilities. In all cases the Cystic Fibrosis Foundation Board of Trustees receives a complete copy of the final Form 990 before it is filed. CONFLICT OF INTEREST MONITORING PART VI, SECTION B, LINE 12C (PAGE 6 CORE FORM) A conflict of interest disclosure statement is completed annually by each Board member and officer. Disclosures provided are reported to the Nominating and Governance Committee, the Audit 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 2012 and had no conflicts of interest as defined by the policy. DETERMINING COMPENSATION PART VI, SECTION B, LINE 15A AND 15B (PAGE 6 CORE FORM) 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 assuring the development of the means to cure and control CF and improving the quality of life for those with the disease. 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 last used in 2012 to establish compensation for the following officers or positions: President & CEO Executive Vice President & COO Executive Vice President for Medical Affairs Senior Vice President & CFO Senior Vice President - CFFP PUBLIC INSPECTION PART VI, SECTION C, LINE 19 (PAGE 6 CORE FORM) Forms 1023 and 990-T for the Organization were available on its website, CFF.org and the Organization's website provided a direct link to its Form 990 on Guidestar.org. The Foundation's governing documents (Bylaws and Articles of Incorporation) were available upon request by contacting the National Office of the Cystic Fibrosis Foundation in writing or by phone. Information on how to obtain the governing documents was also available on the Foundation's website, www.cff.org during 2012. The Board and Officer Conflict of Interest Policy and the audited financial statements were available on the Foundation's website, www.cff.org during 2012. OTHER CHANGE IN NET ASSETS FORM 990, PART XI, LINE 5 GAIN ON SALE OF PHARMACY - 20% RETAINED INTEREST 5.642,139 OTHER CHANGES IN NET ASSETS - CHANGE IN EQUITY IN FORMER SUBSIDIARY (CFS) -22,427,205 ----------- TOTAL TO PART XI, LINE 5 -16,785,066 COMPENSATION OF OFFICERS, DIRECTORS, TRUSTEES, KEY EMPLOYEES, ETC FORM 990, PART VII, SECTION A NAME AND TITLE MICHAEL L. BEATTY, TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE J. TAYLOR CRANDALL, TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE RICHARD L. DANDURAND, VICE CHAIRMAN AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE RICHARD J. GRAY, TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE BARRY M. GUMP, TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE SUSAN L. HOOK, VICE CHAIR AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE CATHERINE C. MCLOUD, CHAIR AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 8 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE CHAD T. MOORE, TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE DAVID A. MOUNT, TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE GARY B. SABIN, VICE CHAIRMAN AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE CHRISTY L. SHAFFER PHD. TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 8 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE STEVEN SHAK, M.D., TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 6 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE CHARLES J. THAYER, TREASURER AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE AMY S. WEINBERG, TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE PAUL W. WHETSELL, VICE CHAIRMAN AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE KC BRYAN WHITE, TRUSTEE AVG HRS WORKED 3 HRS AVG HRS WORKED - RELATED 3 HRS POSITION INDIVIDUAL TRUSTEE REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE ROBERT J. BEALL, PH.D., PRESIDENT AND CEO AVG HRS WORKED 36 HRS AVG HRS WORKED - RELATED 24 HRS POSITION INDIVIDUAL TRUSTEE & OFFICER REPORTABLE COMP FROM THE ORG 669,561 REPORTABLE COMP FROM RELATED ORG 329,867 EST. AMT OF OTHER COMP FROM THE ORG 112,672 NAME AND TITLE C. RICHARD MATTINGLY, EXEC VP, COO & SECRETARY AVG HRS WORKED 50 HRS AVG HRS WORKED - RELATED 10 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 466,050 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 168,894 NAME AND TITLE PRESTON CAMPBELL, M.D., EXEC VP OF MEDICAL AFFAIRS AVG HRS WORKED 36 HRS AVG HRS WORKED - RELATED 24 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 301,431 REPORTABLE COMP FROM RELATED ORG 151,900 EST. AMT OF OTHER COMP FROM THE ORG 155,630 NAME AND TITLE VERA H. TWIGG, SR. VP & CFO AVG HRS WORKED 50 HRS AVG HRS WORKED - RELATED 10 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 335,965 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 77,783 NAME AND TITLE DANIEL KLEIN, SR VP - CFFP AVG HRS WORKED 50 HRS POSITION KEY EMPLOYEE REPORTABLE COMP FROM THE ORG 411,943 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 35,596 NAME AND TITLE ANN PALMER, SR VP OF FIELD MANAGEMENT AVG HRS WORKED 50 HRS POSITION KEY EMPLOYEE REPORTABLE COMP FROM THE ORG 224,058 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 55,108 NAME AND TITLE JAMES STONE, VP OF CFS AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 225,052 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 30,484 NAME AND TITLE DAVID MCLOUGHLIN, SR VP OF OPERATIONS AVG HRS WORKED 40 HRS AVG HRS WORKED - RELATED 10 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 210,744 REPORTABLE COMP FROM RELATED ORG 52,686 EST. AMT OF OTHER COMP FROM THE ORG 57,736 NAME AND TITLE GREGORY AUGUST, CIO AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 209,057 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 52,146 NAME AND TITLE GLEN GOLDMARK, VP OF HUMAN RESOURCES AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 206,181 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 45,479 NAME AND TITLE AMY DEMARIA, SR VP OF COMMUNICATIONS AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 204,533 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 33,919 TOTAL REPORTABLE COMP FROM THE ORG 3,464,575 TOTAL REPORTABLE COMP FROM RELATED ORG 534,453 TOTAL EST. AMT OF OTHER COMP FROM THE ORG 825,446 UNRESTRICTED NET ASSETS - BOARD DESIGNATED FORM 990, PART X, LINE 27 The Foundation's unrestricted net assets total $330,610,330 as of December 31, 2012. Of this amount, the Foundation's Board of Trustees has designated $153,000,000 to be used for drug discovery and development programs. TRANSACTIONS WITH RELATED ORGANIZATIONS FORM 990, SCHEDULE R, PART V On December 6, 2012, the Foundation completed its sale of pharmacy operations. Under the terms of the sale agreement, the purchaser, an unrelated third party, acquired 80% of the outstanding membership interests of Cystic Fibrosis Foundation Pharmacy, LLC (CFFP). The Foundation retained a 20% non-controlling minority interest in CFFP totaling $7,286,043. The gain on the sale of the 80% interest (net of sale expenses) was $21,380,310, and is reported in Part VIII, Line 7c (ii). The gain associated with the Foundation's 20% retained interest in CFFP was $5,642,139. This amount is reported in part XI, line 5 - other changes in net assets. Subsequent to the sale, the Foundation no longer controls CFFP and does not exercise significant influence over CFFP operations. CFFP is the owner of all the outstanding shares of common stock of Cystic Fibrosis Services, Inc (CFS). Due to the sale of its controlling interest in CFFP, the Foundation's ownership and control of CFS also terminated and was transferred to the purchaser as part of the sale transaction. Subsequent to the sale, CFFP became a holding company that includes two independent operating entities: CFS and Pharma Dynamics. Established in 1988, CFS is a full-service specialty pharmacy specializing in cystic fibrosis medications, patient advocacy and reimbursement support. Pharma Dynamics is a new entity created by the purchaser that provides call center services related to cystic fibrosis drugs. Responses at Schedule R Part V (1 of 2) #2 (1), (4) and (5) and Part V ( 2 of 2) # 2 (2), (3), (4) AND (5) relate to transactions that occurred between the Foundation (including its former disregarded entity, CFFP) and CFS prior to the sale. The $10,000,000 note payable referenced on Part V (2 of 2) #(4) was also repaid in full by CFS prior to the sale. CYSTIC FIBROSIS FOUNDATION PHARMACY LLC 6931 ARLINGTON RD BETHESDA MD 20814 510636432 PROGRAM MGT DE 28477305 0 NA cystic fibrosis patient assistance fdn 6931 arlington rd bethesda MD 20814 900350985 patient asst DE 2200404 3882072 na cystic fibrosis foundation therapeutics 6931 ARLINGTON RD BETHESDA MD 20814 912059167 RESEARCH MD 501(c)(3) 11A CFF-HQ true CYSTIC FIBROSIS FOUNDATION GROUP 6931 ARLINGTON RD BETHESDA MD 20814 136161105 EDUCATION DE 501(c)(3) 7 cfF-hq true CYSTIC FIBROSIS SERVICES INC 6931 ARLINGTON RD BETHESDA MD 20814 521850490 PHARMACY MD CFF PHARMACY C 14342610 0 false true true true true false true false false false false false true false true true false false true true CYSTIC FIBROSIS SERVICES INC A(I) 15663 FMV CYSTIC FIBROSIS FOUNDATION THERAPEUTICS C 86638239 FMV CYSTIC FIBROSIS FOUNDATION GROUP c 92063985 FMV CYSTIC FIBROSIS SERVICES INC f 6037874 FMV CYSTIC FIBROSIS SERVICES INC L 9360900 FMV CYSTIC FIBROSIS FOUNDATION THERAPEUTICS N 333740 FMV CYSTIC FIBROSIS FOUNDATION THERAPEUTICS O 1852879 FMV CYSTIC FIBROSIS SERVICES INC S 16947249 FMV CYSTIC FIBROSIS SERVICES INC B 38912756 FMV CYSTIC FIBROSIS SERVICES INC D 10000000 FMV CYSTIC FIBROSIS SERVICES INC R 302969 FMV TRANSACTIONS WITH RELATED ORGANIZATIONS FORM 990, SCHEDULE R, PART V ON DECEMBER 6, 2012 THE FOUNDATION COMPLETED ITS SALE OF PHARMACY OPERATIONS. SEE SCHEDULE O FOR MORE INFORMATION ABOUT THIS TRANSACTION.