2015-08-13T12:00:59-05:00 2014-12-31 BDO USA LLP 8405 GREENSBORO DRIVE 7TH FLOOR MCLEAN VA 22102 990 2014-01-01 131930701 CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS % THE ORGANIZATION CYST 3019514422 6931 ARLINGTON ROAD Suite 200 BETHESDA MD 20814 ROBERT J BEALL PHD President and CEO 7038930600 2015-08-13 true Jeffrey J Schragg P00234543 7038930600 2014 2016-03-07 17:11:31Z ROBERT J BEALL PHD 6931 ARLINGTON ROAD STE 200 BETHESDA MD 20814 3863571817 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 16 271 250000 0 0 279115653 3285132614 2168133 2155742 8179793 55016588 8226904 6708116 297690483 3349013060 27334715 32902431 0 0 25419186 25951581 0 192000 9348560 22293820 20975426 75047721 80021438 222642762 3268991622 692698706 3922688693 94932860 108325747 597765846 3814362946 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 nearly 30,000 children and young adults in the U.S. Currently, there is no cure. false false 45089603 31088737 2155742 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. 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. 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 Foundation's patient registry collects information on the health status of more than 28,600 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. Medical programs consist of approximately 338 grants and other costs to support scientific studies/investigations and cystic fibrosis centers. Approximately 165 grants totaling $15 million were awarded to cystic fibrosis care centers serving approximately 28,600 patients. 3724005 1813694 0 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, 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. Since its inception, Cystic Fibrosis Patient Assistance Foundation, LLC (CFPAF) has responded to 46,496 calls for assistance. In 2014, CFPAF provided $1,813,694 in patient assistance grants to 1,167 CF patients and assisted 190 in filing for benefits. 10589008 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 2014, there were 17 publications and 29 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 2014, over 3,090,075 unique visitors came to the CF Foundation's website. 3034739 0 0 62437355 true true false true false false false false false true true false false true false false true false false true true false true 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 230 0 true 271 true false false false false false false false false false false X 17 16 false false false true 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 THE ORGANIZATION 3019514422 6931 ARLINGTON ROAD STE 200 BETHESDA MD 20814 Michael L Beatty Esq TRUSTEE 3.0 3.0 X 0 0 0 J Taylor Crandall TRUSTEE 3.0 3.0 X 0 0 0 Richard L Dandurand VICE CHAIRMAN 3.0 5.0 X 0 0 0 Louis DeFalco TRUSTEE 3.0 3.0 X 0 0 0 Richard J Gray Esq VICE CHAIRMAN 5.0 3.0 X 0 0 0 Carole B Griego MD TRUSTEE 3.0 3.0 X 0 0 0 Susan L Hook LEADERSHIP COUNCIL CHAIR 5.0 3.0 X 0 0 0 Catherine C McLoud CHAIR 8.0 6.0 X 0 0 0 Chad T Moore TRUSTEE 3.0 3.0 X 0 0 0 David A Mount TRUSTEE 3.0 3.0 X 0 0 0 Gray B Sabin VICE CHAIRMAN 5.0 3.0 X 0 0 0 Steven Shak MD TRUSTEE 3.0 6.0 X 0 0 0 Charles J Thayer TREASURER 3.0 3.0 X 0 0 0 Amy S Weinberg TRUSTEE 3.0 3.0 X 0 0 0 Paul W Whetsell EXEC VICE CHAIRMAN 5.0 3.0 X 0 0 0 KC Bryan White ADULT ADVISORY COUNCIL CHAIR 5.0 3.0 X 0 0 0 Robert J Beall PhD PRESIDENT / CEO 36.0 24.0 X X 650137 323554 224033 C Richard Mattingly EXEC VP, COO & SECRETARY 50.0 10.0 X 645755 0 189266 Preston Campbell MD EXEC VP OF MEDICAL AFFAIRS 36.0 24.0 X 432875 213925 174822 Vera H Twigg EXECUTIVE VP AND CFO 50.0 10.0 X 461903 0 85449 Maureen Fraser VP OF FIELD MANAGEMENT 50.0 0.0 X 219955 0 40382 Daniel Klein SR VP, PATIENT ACCESS PROGRAMS 50.0 0.0 X 294147 0 67981 Christopher Penland PhD VP OF RESEARCH 35.0 15.0 X 199932 30745 49478 David McLoughlin SR. VP OF OPERATIONS 35.0 15.0 X 233360 69839 57656 Glen Goldmark VP OF HUMAN RESOURCES 50.0 0.0 X 239238 0 47024 Mary Dwight SVP POLICY & COMM AFFAIRS 50.0 0.0 X 221875 0 60062 3599177 638063 996153 71 false true false SUFIAN PASSAMANO 712 MAIN STREET STE 2130 HOUSTON TX 77002 HOTLINE/PATIENT ASST 1098500 FOOD SERVICES MANAGEMENT BY MGR LL 41 MARIETTA STREET ATLANTA GA 30303 CONFERENCE CATERING 881861 ACCU-LABEL INC 2021 RESEARCH DRIVE FORT WAYNE IN 46808 PRINTING 661335 SCHANER LUBITZ PLLC 6391 ARLINGTON ROAD BETHESDA MD 20814 LEGAL COUNSEL 634894 GRANTMAIL DIRECT LTD A01-01 15F WORLD TRADE CENTER NINGBO CH PRINTING 613668 50 3271167143 13965471 3285132614 SCIENTIFIC CONFERENCE 611600 1990732 1990732 TRANSITION SERVICES 541610 80261 80261 REFUNDED OR CANCELLED GRANTS 900099 84749 84749 2155742 47793478 47793478 0 6366649 6366649 0 0 0 521781867 514493068 65689 7288799 -65689 7223110 7223110 0 0 0 LIST RENTAL 533110 341467 341467 341467 3349013060 2155742 61724704 30871659 30871659 1831702 1831702 199070 199070 0 3025537 1838876 666075 520586 0 18137443 11023665 3992977 3120801 898939 546362 197902 154675 2528201 1536603 556586 435012 1361461 813849 289253 258359 0 481774 420744 61030 0 286629 28425 258204 0 435561 435561 0 192000 192000 196167 196167 0 3712955 2309448 931076 472431 10608 6153 1379 3076 543025 433387 31903 77735 3908327 3040725 362357 505245 1235897 736177 326076 173644 614123 514654 37822 61647 0 2701138 2638865 20276 41997 0 0 455762 300088 91501 64173 395424 318970 15690 60764 DIRECT MAIL PRINTING 2218536 686193 1532343 DIRECT MAIL POSTAGE 2006784 620698 1386086 QUALITY IMPROVEMENT TRAINING 783404 783404 0 TRAINING 366111 232448 45905 87758 623201 269629 153344 200228 80021438 62437355 8235523 9348560 X 6321435 1955220 0 4366215 X 0 0 53791914 200542178 12026413 10323508 3855668 50121025 0 0 0 0 0 0 229641 265490 1307422 923653 8353181 5465660 3313390 2887521 484322357 2473908461 126808444 1176671743 0 0 0 0 7043457 7045114 692698706 3922688693 16483836 16831621 23236520 28741961 4992667 3325808 0 0 0 0 0 0 0 0 0 0 50219837 59426357 94932860 108325747 X 574947148 3796361145 18850884 14083576 3967814 3918225 597765846 3814362946 692698706 3922688693 3268991622 -52394522 X false true X true false X 106799244 101016043 193893253 279115653 3285132614 3965956807 0 0 106799244 101016043 193893253 279115653 3285132614 3965956807 0 3965956807 2848122 4888930 14145772 17054431 54160127 93097382 0 0 0 0 0 0 467607 576265 480632 449051 341467 2315022 4061369211 82114382 0.97651 0.94573 X OTHER INCOME THE FOUNDATION FOSTERS COLLABORATION WITHIN THE SCIENTIFIC COMMUNITY BY RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1000000 1000000 1000000 3000000 4500000 572513 688016 561245 1821774 250000 250000 250000 750000 1125000 91903 186450 125445 403798 true true false true 3271 true 1142 false true 621824 true 6096 true 5000 637333 false LOBBYING ACTIVITY THE CYSTIC FIBROSIS FOUNDATION IS A NON-PROFIT 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 DIRECTLY, 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 "FLY-IN" EVENTS WHERE VOLUNTEERS MEET WITH MEMBERS OF CONGRESS TO DISCUSS ISSUES CRITICAL TO THE CYSTIC FIBROSIS COMMUNITY AS WELL AS COMMUNICATING REGULARLY WITH FEDERAL LEGISLATORS AND AGENCIES. 1574544 583727 990817 6778637 4881933 1896704 2887521 INFLATION HEDGE COMMINGLED FUN 63273961 F ABSOLUTE VALUE FUND 132668791 F US GOVERMENT TREASURY SEC 521289634 F CORPORATE DEBT SECURITIES 201668572 F US GOVERNMENT AGENCY ASSET 123860400 F COMMERICAL AND OTHER ASSET 129992161 F PERPETUAL TRUSTS 3918224 F 1176671743 0 INTERCOMPANY PAYABLE 59426357 59426357 true North America Grantmaking NONE 127570 Europe (Including Iceland and Greenland) Grantmaking NONE 71500 199070 199070 North America PILOT STUDY 84370 CHECK North America PILOT STUDY 43200 CHECK Europe (Including Iceland and Greenland) PILOT STUDY 21500 WIRE Europe (Including Iceland and Greenland) PILOT STUDY 50000 WIRE 4 true false true true false 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. FOREIGN FORMS THE ACTIVITIES REFERENCED IN SCHEDULE F PART IV ARE LIMITED TO THE FOUNDATION'S INVESTMENT IN A FUND OF FUNDS AND A GLOBAL EQUITY FUND. X X X X X true NNE MARKETING 105 PAUL REVERE ROAD CONCORD MA 01742 strategy on mail false 9952379 281210 9671169 9952379 281210 9671169 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 PROFESSIONAL FUNDRAISING SERVICES SCHEDULE G, PART I, LINE 2B CFF HAS A WRITTEN CONTRACT WITH NNE MARKETING TO CONSULT ON ITS DIRECT MARKETING FUNDRAISING EFFORTS. THE EXPENSE FOR THE PROJECT IS $16,000 PER MONTH OR $192,000 PER YEAR, PLUS CREATIVE DEVELOPMENT, WHICH IS BILLED SEPARATELY AND ACCOUNTS FOR THE DIFFERENCE IN THE TOTAL AMOUNT PAID AND THOSE CONSULTING ACTIVITIES THAT MAY BE CONSIDERED PROFESSIONAL FUNDRAISING SERVICES. ALL DONATIONS THAT RESULT FROM MARKETING CAMPAIGNS, WHICH NNE ASSISTS WITH, ARE MADE PAYABLE DIRECTLY TO THE FOUNDATION. true Advocate Medical Group 701 Lee St Des Plaines IL 60016 362169147 501c(3) 59570 CF CARE CENTER Albany Medical College Elsmere A-107 Albany NY 12208 141338310 501c(3) 99590 CF CARE CENTER Alfred I Dupont Institute of the Nemours Foundati 1600 Rockland Road Wilmington DE 19899 590634433 501c(3) 214435 CF CARE CENTER All Children's Hospital Dept 9010 PO Box 269 St Petersburg FL 33731 590683252 501c(3) 95090 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 501c(3) 152100 CF CARE CENTER Ann and Robert H Lurie Children's Hospital of Chi 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501c(3) 120615 RESEARCH Ann and Robert H Lurie Children's Hospital of Chi 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501c(3) 43200 PILOT STUDY Ann and Robert H Lurie Children's Hospital of Chi 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501c(3) 102600 QUALITY IMPROVEMENT Arizona Board of Regents University of Arizona Sponsored Projects Services Tucson AZ 857223308 742652689 IRC 115 27000 ADULT CARE Arizona Board of Regents University of Arizona Sponsored Projects Services 888 N Euclid Room 510 Tucson AZ 857223308 742652689 IRC 115 56825 CF CARE CENTER Arkansas Children's Hospital Research Institute I 800 Marshall Street 888 N Euclid Room 510 Little Rock AR 72202 710694931 501c(3) 85225 CF CARE CENTER Asthma and Allergy Specialists PA 411 Billings Road Slot 512-17 Charlotte NC 28211 561913043 C CORP 49370 CF CARE CENTER Atlantic Health System 100 Madison Avenue Suite 104 Morristown NJ 07962 521958352 501c(3) 77710 CF CARE CENTER Baylor College of Medicine PO Box 1 Houston TX 77212 741613878 501c(3) 59393 ADULT CARE Baylor College of Medicine PO Box 1 Houston TX 77212 741613878 501c(3) 281525 CF CARE CENTER Baystate Medical Center (95-196) 759 Chestnut Street Springfield MA 01199 042790311 501c(3) 33615 CF CARE CENTER Beth Israel Medical Center Office of Grants Contracts New York NY 10038 135564934 501c(3) 52050 CF CARE CENTER Billings Clinic 2800 10th Avenue North 160 Water Street 24th Floor Billings MT 59107 810231784 501c(3) 62365 CF CARE CENTER Board of Regents of the University of Wisconsin Sy 750 University Avenue Madison WI 53706 396006492 501c(3) 163545 CF CARE CENTER Board of Trustees of Southern Illinois University Division of Pulmonary Medicine Springfield IL 62794 376005961 501c(3) 17710 CF CARE CENTER Board of Trustees of the Leland Stanford Junior Un Stanford University PO Box 19636 Stanford CA 943056215 941156365 501c(3) 168303 CF CARE CENTER Board of Trustees of the Leland Stanford Junior Un Stanford University 651 Serra Street Suite 220 Stanford CA 943056215 941156365 501c(3) 97200 RESEARCH Board of Trustees of the Leland Stanford Junior Un Stanford University 651 Serra Street Suite 220 Stanford CA 943056215 941156365 501c(3) 48000 TRAINING Brigham and Women's Hospital Boston 10 Vining Street 651 Serra Street Suite 220 Boston MA 02115 042312909 501c(3) 97200 RESEARCH Brigham and Women's Hospital Boston 10 Vining Street Boston MA 02115 042312909 501c(3) 43200 PILOT STUDY California Pacific Medical Center Research Institu 2200 Webster Street Room 405 San Francisco CA 94115 940562680 501c(3) 15950 CF CARE CENTER CAMC Health Education and Research Institute PO Box 765 Charleston WV 25323 550753754 501c(3) 38815 CF CARE CENTER Carle Foundation Hospital 611 W Park Street Urbana IL 61801 371119538 501c(3) 29570 CF CARE CENTER Case Western Reserve University 10900 Euclid Avenue Cleveland OH 441067037 341018992 501c(3) 269400 RESEARCH Case Western Reserve University 10900 Euclid Avenue Attn Deborah Elam Cleveland OH 441067037 341018992 501c(3) 43200 PILOT STUDY Case Western Reserve University 10900 Euclid Avenue Attn Deborah Elam Cleveland OH 441067037 341018992 501c(3) 349281 RESEARCH CENTER Case Western Reserve University 10900 Euclid Avenue Attn Deborah Elam Cleveland OH 441067037 341018992 501c(3) 11880 QUALITY IMPROVEMENT Center for Medical Technology Policy World Trade Center Baltimore Attn Deborah Elam Baltimore MD 21202 271203017 501c(3) 149712 QUALITY IMPROVEMENT Central Florida Pulmonary Group 326 North Mills Avenue 401 East Pratt Street Suite 631 Orlando FL 32803 591760017 C CORP 51325 CF CARE CENTER Chest Medicine Associates 100 Foden Road South Portland ME 04103 010461391 C CORP 27000 ADULT CARE Children's & Women's Physicians of Westchester Pediatric Pulmonology Valhalla NY 10595 133956599 LLP 75855 CF CARE CENTER Children's Health Care 2525 Chicago Avenue SO Munger Pavilion Room 106 Minneapolis MN 55404 411754276 501c(3) 57415 CF CARE CENTER Children's Healthcare of Atlanta 1001 Johnson Ferry Road North 32-2210 Atlanta GA 30342 582367819 501c(3) 86600 CF CARE CENTER Children's Healthcare of Atlanta 1001 Johnson Ferry Road North Atlanta GA 30342 582367819 501c(3) 11880 QUALITY IMPROVEMENT Children's Hospital & Research Center at Oakland 747 52nd Street Oakland CA 94609 940382330 501c(3) 35005 CF CARE CENTER Children's Hospital Central California 9300 Valley Childrens Place Madera CA 93638 941294954 501c(3) 72805 CF CARE CENTER Children's Hospital Corporation 300 Longwood Ave Boston MA 021155737 042774441 501c(3) 32200 ADULT CARE Children's Hospital Corporation 300 Longwood Ave Boston MA 021155737 042774441 501c(3) 288370 CF CARE CENTER Children's Hospital Corporation 300 Longwood Ave Boston MA 021155737 042774441 501c(3) 103000 TRAINING Children's Hospital Medical Center Cincinnati Childrens Hospital Medi Cincinnati OH 45229 310833936 501c(3) 117110 CF CARE CENTER Children's Hospital Medical Center Cincinnati Childrens Hospital Medi Research Accounting Cincinnati OH 45229 310833936 501c(3) 97750 TRAINING Children's Hospital Medical Center Cincinnati Childrens Hospital Medi Research Accounting Cincinnati OH 45229 310833936 501c(3) 384368 RESEARCH CENTER Children's Hospital Medical Center Akron One Perkins Square Research Accounting Akron OH 443081062 340714357 501c(3) 129235 CF CARE CENTER Children's Hospital Medical Center Akron One Perkins Square Akron OH 443081062 340714357 501c(3) 9903 QUALITY IMPROVEMENT Children's Hospital of Michigan 3663 Woodward Ave S Ste 200 Detroit MI 48201 381357994 501c(3) 70960 CF CARE CENTER Children's Hospital of Orange County PO Box 5700 Orange CA 926135700 952321786 501c(3) 40155 CF CARE CENTER Children's Hospital of Pittsburgh 3705 Fifth Avenue Pittsburgh PA 15213 250402510 501c(3) 249635 CF CARE CENTER Children's Hospital Los Angeles Research Institute Los Angeles CA 90027 951690977 501c(3) 82820 CF CARE CENTER Children's Lung Specialists 3838 Meadows Lane 4650 Sunset Blvd Las Vegas NV 89107 880271963 501c(3) 82765 CF CARE CENTER Children's Medical Center One Childrens Plaza Dayton OH 454041815 310672132 501c(3) 86180 CF CARE CENTER Children's Mercy Hospital 2401 Gillham Road Kansas City MO 64108 440605373 501c(3) 120795 CF CARE CENTER Children's National Medical Center 111 Michigan Avenue NW Washington DC 20010 521654453 501c(3) 100430 CF CARE CENTER Children's Specialty Group PLLC 811 Redgate Ave Norfolk VA 23507 541871633 501c(3) 72495 CF CARE CENTER Christus Santa Rosa Healthcare 333 North Santa Rosa San Antonio TX 78207 741109665 501c(3) 23500 CF CARE CENTER Connecticut Children's Medical Center 282 Washington Street Hartford CT 06106 060646755 501c(3) 47035 CF CARE CENTER Cook Children's Medical Center CF Center 801 Seventh Avenue Ft Worth TX 76104 752051646 501c(3) 152045 CF CARE CENTER Daughters of Charity Health Services of Austin PO Box 1 Houston TX 77212 741109643 501c(3) 98435 CF CARE CENTER Daughters of Charity Health Services of Austin PO Box 1 Houston TX 77212 741109643 501c(3) 23760 QUALITY IMPROVEMENT Duke University Office of Sponsored Programs Durham NC 27710 560532129 501c(3) 63815 CF CARE CENTER East Tennessee Children's Hospital Association I 2100 Clinch Avenue 310 Box 104025 Knoxville TN 37916 626002604 501c(3) 75610 CF CARE CENTER East Tennessee Children's Hospital Association I 2100 Clinch Avenue 310 Knoxville TN 37916 626002604 501c(3) 23760 QUALITY IMPROVEMENT Eastern Maine Medical Center 417 State Street Bangor ME 04401 010211501 501c(3) 29635 CF CARE CENTER Emory University 1380 South Oxford Road Suite 305 Atlanta GA 30322 580566256 501c(3) 59149 ADULT CARE Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501c(3) 212880 CF CARE CENTER Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501c(3) 246860 RESEARCH Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501c(3) 43200 PILOT STUDY Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501c(3) 100000 RESEARCH CENTER Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501c(3) 9210 QUALITY IMPROVEMENT Erlanger Health System 975 East Third Street Chattanooga TN 37403 626000101 501c(3) 40355 CF CARE CENTER Faculty Physicians & Surgeons of LLUSM Coleman Pavilion Loma Linda CA 92350 330672915 501c(3) 51495 CF CARE CENTER Fairfax Neonatal Associates PC dbaPediatric Lung 2730-B Prosperity Avenue PO Box 2000 Fairfax VA 22031 541110106 C CORP 20790 CF CARE CENTER Fletcher Allen Health Care 111 Colchester Ave Burlington VT 05401 030219309 501c(3) 32157 ADULT CARE Fletcher Allen Health Care 111 Colchester Ave Burlington VT 05401 030219309 501c(3) 92535 CF CARE CENTER Geisinger Medical Center Pediatric Allergy Immunology Pul Danville PA 17822 236291113 501c(3) 55865 CF CARE CENTER Georgia Health Sciences University 1120 15th Street 100 N Academy Drive Augusta GA 309128300 586002053 501c(3) 98370 CF CARE CENTER Good Samaritan Hospital 1000 Montauk Highway New York NY 11795 111888924 501c(3) 13750 CF CARE CENTER Greenville Hospital System 701 Grove Road Greenville SC 29605 576007863 501c(3) 37765 CF CARE CENTER Gundersen Lutheran Medical Foundation 1900 South Avenue La Crosse WI 54601 391249705 501c(3) 19765 CF CARE CENTER Hartford Hospital Department of Medicine Hartford CT 06102 060646668 501c(3) 51995 CF CARE CENTER Henry M Jackson Foundation for the advancement of 1404 Rockville Pike Suite 600 80 Seymour Street Rockville MD 20852 521317896 501c(3) 45505 CF CARE CENTER Henry M Jackson Foundation for the advancement of 1404 Rockville Pike Suite 600 Rockville MD 20852 521317896 501c(3) 86400 PILOT STUDY Iowa Health Foundation (Blank Children's CF Center 1440 Ingersoll Avenue Des Moines IA 50309 421467682 501c(3) 50155 CF CARE CENTER Kaiser Foundation Research Institute 1800 Harrison Street OAKLAND CA 94612 941105628 501c(3) 190090 CF CARE CENTER Kaleida Health 219 Bryant Street 16th floor Buffalo NY 14209 161533232 501c(3) 99870 CF CARE CENTER Landon Pediatric Foundation 3291 Loma Vista Road Ventura CA 93003 931097216 501c(3) 32730 CF CARE CENTER Lee Memorial Health System Foundation Inc 16451 HealthPark Commons 200 Building 340 Suite 302 Ft Myers FL 339083630 650645343 501c(3) 19855 CF CARE CENTER Lehigh Valley Hospital Pediatric Specialty Center Bethlehem PA 18017 231689692 501c(3) 20090 CF CARE CENTER Long Island Jewish Medical Center Finance Department 2545 Schoenersville Road Westbury NY 11590 112241326 501c(3) 105780 CF CARE CENTER Long Island Jewish Medical Center Finance Department 972 Brushhollow Road Westbury NY 11590 112241326 501c(3) 266668 QUALITY IMPROVEMENT Loyola University of Chicago 2160 S First Avenue 972 Brushhollow Road Maywood IL 60153 361408475 501c(3) 50645 CF CARE CENTER LSUMC - Shreveport P O Box 33932 Shreveport LA 71130 720702002 501c(3) 77445 CF CARE CENTER Lutheran Hospital of Indiana 7950 West Jefferson Boulevard FT Wayne IN 46804 351963748 C CORP 42465 CF CARE CENTER Maine Medical Center 22 Bramhall Street Portland ME 04102 010238552 501c(3) 100430 CF CARE CENTER Marshfield Clinic Research Foundation 1000 North Oak Avenue Marshfield WI 54449 390452970 501c(3) 23390 CF CARE CENTER Mary Bridge Children's Foundation 311 South L Street Tacoma WA 98405 943030039 501c(3) 39475 CF CARE CENTER Mayo Clinic Rochester 200 First Street SW Mailstop B1-OC Rochester MN 55905 416011702 501c(3) 18000 CF CARE CENTER Medical University of South Carolina PO Box 997 Plummer 5 Charleston SC 29402 576000722 501c(3) 89035 CF CARE CENTER Memorial Medical Center Foundation 2801 Atlantic Avenue Long Beach CA 908011428 956105984 501c(3) 118410 CF CARE CENTER Miami Children's Hospital MOB 203 PO Box 1428 Miami FL 33155 590638499 501c(3) 28325 CF CARE CENTER Michigan State University 301 Administration Bldg 3200 SW 60th Court East Lansing MI 488241046 386005984 501c(3) 43200 PILOT STUDY Michigan State UniversityKCMS 1000 Oakland Drive Kalamazoo MI 49001 386005984 501c(3) 52080 CF CARE CENTER Miller School of Medicine University of Miami 1600 NW 10th Ave Miami FL 33136 590624458 501c(3) 288174 QUALITY IMPROVEMENT Mission Healthcare Foundation Inc 980 Hendersonville Road Room 7058 Asheville NC 28803 561881331 501c(3) 6000 CF CARE CENTER Monmouth Medical Center Foundation 300 Second Avenue Suite C Long Branch NJ 07740 222456079 501c(3) 65810 CF CARE CENTER National Jewish Medical and Research Center 1400 Jackson Street Denver CO 80206 742044647 501c(3) 127470 CF CARE CENTER National Jewish Medical and Research Center 1400 Jackson Street Denver CO 80206 742044647 501c(3) 291240 RESEARCH Nemours Children's Clinic Jacksonville 807 Nira Street Jacksonville FL 32207 590634433 501c(3) 32400 ADULT CARE Nemours Children's Clinic Jacksonville 807 Nira Street Jacksonville FL 32207 590634433 501c(3) 21600 QUALITY IMPROVEMENT New York University School of Medicine 550 First Avenue New York NY 10016 135562308 501c(3) 27000 ADULT CARE New York University School of Medicine 550 First Avenue New York NY 10016 135562308 501c(3) 50985 CF CARE CENTER North Suburban Pulmonary Research and Education 8780 W Gold Niles IL 60714 364393617 501c(3) 9000 CF CARE CENTER Oregon Health & Science University Sponsored Projects Administration O Suite 102 Portland OR 97239 237083114 501c(3) 32400 ADULT CARE Oregon Health & Science University Sponsored Projects Administration O 0690 SW Bancroft Street Portland OR 97239 237083114 501c(3) 187835 CF CARE CENTER Oregon Health & Science University Sponsored Projects Administration O 0690 SW Bancroft Street Portland OR 97239 237083114 501c(3) 41525 QUALITY IMPROVEMENT Orlando Health Foundation 3160 Southgate Commerce Blvd 0690 SW Bancroft Street Orlando FL 32806 592244943 501c(3) 55470 CF CARE CENTER Pennsylvania State University College of Medicine Suite 50 Hershey PA 17033 246000376 IRC 115 130460 CF CARE CENTER Philadelphia Health & Education Corp (Drexel U) 3201 Arch Street Office of Research Affairs H138 Philadelphia PA 19104 232979433 501c(3) 56831 ADULT CARE Philadelphia Health & Education Corp (Drexel U) 3201 Arch Street Suite 420 Philadelphia PA 19104 232979433 501c(3) 89720 CF CARE CENTER Phoenix Children's Hospital 1300 North 12th Street Suite 420 Phoenix AZ 85006 860422559 501c(3) 146800 CF CARE CENTER Providence Alaska Medical Center 3200 Providence Drive Anchorage AK 995196604 920016429 501c(3) 31315 CF CARE CENTER Providence Physician Service 101 W 8th Ave PO Box 196604 Spokane WA 99204 911216033 C CORP 67530 CF CARE CENTER Regents of the University of Colorado Grants Contracts Aurora CO 800450508 846000555 501c(3) 180580 CF CARE CENTER Regents of the University of Colorado Grants Contracts F428 Fitzsimons Building 500 Aurora CO 800450508 846000555 501c(3) 167011 TRAINING Renown Health Foundation 1155 Mill St Z-5 F428 Fitzsimons Building 500 Reno NV 89502 942872749 501c(3) 19645 CF CARE CENTER Rhode Island Hospital 593 Eddy Street Providence RI 02903 050258954 501c(3) 60900 CF CARE CENTER Rosalind Franklin University of Medicine and Scien 3333 Green Bay Road North Chicago IL 60064 362181973 501c(3) 173774 RESEARCH Rush University Medical Center 1725 West Harrison Suite 718 Chicago IL 60612 362174823 501c(3) 27000 ADULT CARE Rush University Medical Center 1725 West Harrison Suite 718 Chicago IL 60612 362174823 501c(3) 47690 CF CARE CENTER Rutgers The State University of New Jersey 58 Bevier Road Piscataway NJ 088548010 462354111 501c(3) 67855 CF CARE CENTER Saint Barnabas Medical Center Saint Barnabas Medical Center Livingston NJ 07039 221494440 501c(3) 25495 CF CARE CENTER Saint Francis Medical Center 530 NE Glen Oak Avenue Pediatric Pulmonary Division Peoria IL 61637 370662569 501c(3) 49015 CF CARE CENTER Saint Joseph's Hospital and Medical Center 703 Main Street Paterson NJ 07503 221487602 501c(3) 24945 CF CARE CENTER Samaritan Medical Center Child Adolescent Health Services Watertown NY 13601 150533577 501c(3) 8950 CF CARE CENTER Sanford Children's Specialty Clinic 1305 W 18th Street 513 Washington Street Sioux Falls SD 571175039 460447693 501c(3) 67485 CF CARE CENTER Sanford Medical Center Fargo 801 North Broadway Fargo ND 581220176 450226909 501c(3) 18610 CF CARE CENTER Santa Barbara Cottage Hospital 2405 De La Vina Street Santa Barbara CA 93105 951644629 501c(3) 6000 CF CARE CENTER Scott & White Memorial Hospital 2401 South 31st Street Temple TX 76508 741166904 501c(3) 26360 CF CARE CENTER Seattle Children's Hospital Foundation 6901 Sand Point Way NE Seattle WA 981050371 910564748 501c(3) 111845 CF CARE CENTER South Broward Hospital District Joe DiMaggios Childrens Hospital Hollywood FL 33321 596014973 501c(3) 71980 CF CARE CENTER Spectrum Health Foundation Downtown Campus Cystic Fibrosis Clinic Grand Rapids MI 49503 382752328 501c(3) 145490 CF CARE CENTER Spectrum Health Foundation Downtown Campus 100 Michigan Street NE MC 004 Grand Rapids MI 49503 382752328 501c(3) 23760 QUALITY IMPROVEMENT St Alexius Medical Center PO Box 5510 100 Michigan Street NE MC 004 Bismarck ND 585065510 450226711 501c(3) 32655 CF CARE CENTER St Joseph's Regional Medical Center Inc 611 East Cedar Street Mishawaka IN 465451468 351568821 501c(3) 27570 CF CARE CENTER St Louis University 3500 Lindell Blvd Suite 405 St Louis MO 63103 430654872 501c(3) 105540 CF CARE CENTER St Luke's Regional Medical Center 100 East Idaho Boise ID 83712 820161600 501c(3) 68615 CF CARE CENTER Stony Brook University Hospital Division of Pediatric Pulmonary Suite 200 Stony Brook NY 117943362 141368361 501c(3) 157275 CF CARE CENTER Sutter Medical Center Sacramento 5609 J Street Suite C HSC T11-080 Sacramento CA 95819 941156621 501c(3) 50190 CF CARE CENTER Tenet St Mary's Inc Cystic Fibrosis Center PO Box 24620 West Palm Beach FL 33407 752932830 C CORP 48070 CF CARE CENTER Tennessee Department of HealthLab Services 710 James Robertson Parkway 6th fl 901 45th Street Nashville TN 37243 626001445 OTHER-GOV'T 20000 QUALITY IMPROVEMENT Texas Tech University Health Sciences Center 3601 4th Street Lubbock TX 79430 752668014 IRC 115 20470 CF CARE CENTER The Adult Cystic Fibrosis Center of Jacksonville 425 N Lee Street Suite 202 Mail Stop 6591 Jacksonville FL 32204 204055796 501c(3) 23620 CF CARE CENTER The Children's Hospital of Philadelphia 3516 Civic Center Blvd Philadelphia PA 191044318 231352166 501c(3) 32400 ADULT CARE The Children's Hospital of Philadelphia 3516 Civic Center Blvd Philadelphia PA 191044318 231352166 501c(3) 153975 CF CARE CENTER The Children's Hospital of Philadelphia 3516 Civic Center Blvd Philadelphia PA 191044318 231352166 501c(3) 68250 TRAINING The Curators of the University of Missouri Office of Sponsored Program Adminis Columbia MO 65211 436003859 501c(3) 79105 CF CARE CENTER The Curators of the University of Missouri Office of Sponsored Program Adminis 310 Jesse Hall Columbia MO 65211 436003859 501c(3) 11660 RESEARCH The Curators of the University of Missouri Office of Sponsored Program Adminis 310 Jesse Hall Columbia MO 65211 436003859 501c(3) 43850 RESEARCH STUDY The General Hospital Corporation (Massachusetts) Mass General Research Finance 310 Jesse Hall Boston MA 02114 042697983 501c(3) 103120 CF CARE CENTER The General Hospital Corporation (Massachusetts) Mass General Research Finance PO Box 414876 Boston MA 02114 042697983 501c(3) 86950 RESEARCH STUDY The General Hospital Corporation (Massachusetts) Mass General Research Finance PO Box 414876 Boston MA 02114 042697983 501c(3) 107999 PILOT STUDY The General Hospital Corporation (Massachusetts) Mass General Research Finance PO Box 414876 Boston MA 02114 042697983 501c(3) 86263 TRAINING The Hitchcock Foundation One Medical Center Drive PO Box 414876 Lebanon NH 03756 020222139 501c(3) 108690 CF CARE CENTER The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 255700 CF CARE CENTER The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 289350 RESEARCH The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 54750 RESEARCH STUDY The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 43166 PILOT STUDY The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 263790 RESEARCH CENTER The Medical College of Wisconsin 8701 Watertown Plk Rd Milwaukee WI 53226 390806261 501c(3) 166435 CF CARE CENTER The Medical College of Wisconsin 8701 Watertown Plk Rd Milwaukee WI 53226 390806261 501c(3) 81000 QUALITY IMPROVEMENT The Ohio State University 1960 Kenny Road Columbus OH 43210 316025986 IRC 115 97200 RESEARCH The President & Fellows of Harvard College 25 Shattuck Street Boston MA 02115 042103580 501c(3) 42750 RESEARCH STUDY The Rector and Visitors of the University of Virgi PO Box 400195 Charlottesville VA 229044195 546001796 501c(3) 110530 CF CARE CENTER The Regents of the University of California Davis Cashiers Office 1200 Dutton Hall Office of Sponsored Programs Davis CA 95616 946036494 501c(3) 72510 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 501c(3) 27000 ADULT CARE 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 501c(3) 145165 CF CARE CENTER The Regents of the University of California San F UCSF Office of Sponsored Research 9500 Gilman Drive Dept 0934 San Francisco CA 941430962 946036493 501c(3) 32400 ADULT CARE 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) 81060 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 501c(3) 100000 RESEARCH 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) 89317 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) 460000 RESEARCH CENTER The Regents of the University of Michigan 3003 South State Street Room 3089 3333 California Street Suite 315 Ann Arbor MI 481091274 386006309 501c(3) 32400 ADULT CARE The Regents of the University of Michigan 3003 South State Street Room 3089 Ann Arbor MI 481091274 386006309 501c(3) 237170 CF CARE CENTER The Regents of the University of Michigan 3003 South State Street Room 3089 Ann Arbor MI 481091274 386006309 501c(3) 43200 PILOT STUDY The Regents of the University of Michigan 3003 South State Street Room 3089 Ann Arbor MI 481091274 386006309 501c(3) 49750 TRAINING The Regents of the University of Michigan 3003 South State Street Room 3089 Ann Arbor MI 481091274 386006309 501c(3) 21600 QUALITY IMPROVEMENT The Regents of the University of Minnesota Sponsored Projects Administration Minneapolis MN 554552070 416007513 501c(3) 32400 ADULT CARE The Regents of the University of Minnesota Sponsored Projects Administration 200 Oak St SE Minneapolis MN 554552070 416007513 501c(3) 279860 CF CARE CENTER The Research Institute at Nationwide Children's H 700 CHILDRENS DRIVE Columbus OH 432052664 316056230 501c(3) 221340 CF CARE CENTER The Research Institute at Nationwide Children's H 700 CHILDRENS DRIVE Columbus OH 432052664 316056230 501c(3) 43200 PILOT STUDY The Tampa General Hospital Foundation PO Box 1289 Dept 4656 / Ref 413407 Tampa FL 33601 237354477 501c(3) 86575 CF CARE CENTER The Trustees of Columbia University in the City of 351 Engineering Terrace New York NY 10027 135598093 501c(3) 32400 ADULT CARE The Trustees of Columbia University in the City of 351 Engineering Terrace New York NY 10027 135598093 501c(3) 141355 CF CARE CENTER The Trustees of Columbia University in the City of 351 Engineering Terrace New York NY 10027 135598093 501c(3) 97750 TRAINING The University of Alabama at Birmingham 1530 3rd Ave S THT422 Birmingham AL 352940006 636005396 501c(3) 276250 CF CARE CENTER The University of Alabama at Birmingham 1530 3rd Ave S THT422 Birmingham AL 352940006 636005396 501c(3) 215909 RESEARCH The University of Alabama at Birmingham 1530 3rd Ave S THT422 Birmingham AL 352940006 636005396 501c(3) 42750 RESEARCH STUDY The University of Alabama at Birmingham 1530 3rd Ave S THT422 Birmingham AL 352940006 636005396 501c(3) 500000 RESEARCH CENTER The University of Alabama at Birmingham 1530 3rd Ave S THT422 Birmingham AL 352940006 636005396 501c(3) 137919 QUALITY IMPROVEMENT The University of Chicago 5801 S Ellis Avenue Chicago IL 60637 362177139 501c(3) 64385 CF CARE CENTER The University of Chicago University Research Administration Chicago IL 60637 362177139 501c(3) 75000 RESEARCH The University of North Carolina at Chapel Hill North Carolina State Treasurer 970 E 58th Street Chapel Hill NC 275991350 566001393 501c(3) 282840 CF CARE CENTER The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501c(3) 423368 RESEARCH The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501c(3) 165540 TRAINING The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501c(3) 88800 RESEARCH STUDY The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501c(3) 43181 PILOT STUDY The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501c(3) 460000 RESEARCH CENTER The University of North Carolina at Chapel Hill 300 Bynum Hall Office of Sponsored Research Chapel Hill NC 275994100 566001393 501c(3) 96047 QUALITY IMPROVEMENT The University of North Carolina at Charlotte 9201 University City Blvd CB 4100 Charlotte NC 282230001 560791228 501c(3) 42746 RESEARCH STUDY The University of Texas at Austin P O Box 7726 Austin TX 787137726 746000203 501c(3) 86599 RESEARCH STUDY The University of Texas at Austin P O Box 7726 Austin TX 787137726 746000203 501c(3) 43200 PILOT STUDY Toledo Children's Hospital 2142 N Cove Blvd Toledo OH 43606 344428256 501c(3) 96945 CF CARE CENTER Toledo Children's Hospital 2142 N Cove Blvd Toledo OH 43606 344428256 501c(3) 23760 QUALITY IMPROVEMENT Trustees of Boston University 881 Commonwealth Avenue Boston MA 02215 042103547 501c(3) 104500 TRAINING Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501c(3) 89900 RESEARCH STUDY Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501c(3) 43200 PILOT STUDY Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501c(3) 346667 RESEARCH CENTER Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501c(3) 652847 QUALITY IMPROVEMENT Trustees of Indiana University Financial Management Services Bloomington IN 462666057 356001673 501c(3) 32400 ADULT CARE Trustees of Indiana University Financial Management Services PO Box 66057 Bloomington IN 462666057 356001673 501c(3) 232580 CF CARE CENTER Trustees of Indiana University Financial Management Services PO Box 66057 Bloomington IN 462666057 356001673 501c(3) 49750 TRAINING Trustees of the University of Pennsylvania 133 South 36th Street Mezzanine PO Box 66057 Philadelphia PA 191043246 231352685 501c(3) 27000 ADULT CARE Trustees of the University of Pennsylvania 133 South 36th Street Mezzanine Philadelphia PA 191043246 231352685 501c(3) 73358 PILOT STUDY Trustees of the University of Pennsylvania 133 South 36th Street Mezzanine Philadelphia PA 191043246 231352685 501c(3) 59083 RESEARCH CENTER Trustees of the University of Pennsylvania on beha 3451 Walnut Street Philadelphia PA 19104 231352685 501c(3) 124990 CF CARE CENTER Tulane University Medical School 6401 Freret St Franklin Bldg P-221 New Orleans LA 70118 720423889 501c(3) 32400 ADULT CARE Tulane University Medical School 6401 Freret St New Orleans LA 70118 720423889 501c(3) 110635 CF CARE CENTER University at Buffalo Pediatric Associates 1028 Main Street Buffalo NY 01402 161238821 501c(3) 81000 QUALITY IMPROVEMENT University Hospitals of Cleveland 2074 Abingdon Road Cleveland OH 44106 340714775 501c(3) 26336 ADULT CARE University Hospitals of Cleveland 2074 Abingdon Road Cleveland OH 44106 340714775 501c(3) 179085 CF CARE CENTER University Hospitals of Cleveland 2074 Abingdon Road Cleveland OH 44106 340714775 501c(3) 11880 QUALITY IMPROVEMENT University of Arkansas for Medical Sciences 4301 West Markham Street Little Rock AR 72205 716046242 501c(3) 53865 CF CARE CENTER University of Cincinnati Physicians Company 231 Albert Sabin Way Mail Slot 555 Cincinnati OH 452670564 311405915 501c(3) 66445 CF CARE CENTER University of Cincinnati Physicians Company 231 Albert Sabin Way MSB 60048 Cincinnati OH 452670564 311405915 501c(3) 91893 QUALITY IMPROVEMENT University of Florida Shands Childrens Hospital MSB 60048 Gainesville FL 32610 596002052 IRC 115 93450 CF CARE CENTER University of Florida Shands Childrens Hospital 1600 SW Archer Rd Suite D2-15 Gainesville FL 32610 596002052 IRC 115 17210 QUALITY IMPROVEMENT University of Iowa Grant Accounting Office 1600 SW Archer Rd Suite D2-15 Iowa City IA 52242 426004813 501c(3) 142305 CF CARE CENTER University of Iowa Grant Accounting Office B 5 Jessup Hall Iowa City IA 52242 426004813 501c(3) 194400 RESEARCH University of Iowa Grant Accounting Office B 5 Jessup Hall Iowa City IA 52242 426004813 501c(3) 136500 TRAINING University of Iowa Grant Accounting Office B 5 Jessup Hall Iowa City IA 52242 426004813 501c(3) 129600 PILOT STUDY University of Iowa Grant Accounting Office B 5 Jessup Hall Iowa City IA 52242 426004813 501c(3) 1000000 RESEARCH CENTER University of Kansas Medical Center Research Insti 3901 Rainbow Boulevard MSN 1039 B 5 Jessup Hall Kansas City KS 661032937 481108830 501c(3) 27000 ADULT CARE University of Kansas Medical Center Research Insti 3901 Rainbow Boulevard MSN 1039 Kansas City KS 661032937 481108830 501c(3) 102885 CF CARE CENTER University of Kansas Medical Center Research Insti 3901 Rainbow Boulevard MSN 1039 Kansas City KS 661032937 481108830 501c(3) 97200 RESEARCH University of Kentucky Research Foundation Kentucky CF Clinic J424 Lexington KY 405360284 616033693 501c(3) 121670 CF CARE CENTER University of Louisville Research Foundation Inc Office of Grants Management 740 South Limestone Louisville KY 40292 611029626 501c(3) 114675 CF CARE CENTER University of Maryland 650 W Baltimore St - 8 South Jouett Hall Belknap Campus Baltimore MD 21201 526002033 IRC 115 43200 PILOT STUDY University of Massachusetts Medical Center 55 Lake Avenue Worcester MA 10655 043167352 IRC 115 25240 ADULT CARE University of Massachusetts Medical Center 55 Lake Avenue Worcester MA 10655 043167352 IRC 115 73836 CF CARE CENTER University of Miami Pediatric/Pulmonary Division Miami FL 33137 590624458 501c(3) 73575 CF CARE CENTER University of Miami Pediatric/Pulmonary Division 1601 NW 12th Avenue Miami FL 33137 590624458 501c(3) 97200 RESEARCH University of Nebraska Medical Center Service Building 1601 NW 12th Avenue Omaha NE 681987835 470049123 501c(3) 27000 ADULT CARE University of Nebraska Medical Center Service Building 985100 Nebraska Medical Center Omaha NE 681987835 470049123 501c(3) 162400 CF CARE CENTER University of New Mexico Health Sciences Center Controllers Office 985100 Nebraska Medical Center Albuquerque NM 871315041 856000642 IRC 115 80775 CF CARE CENTER University of Oklahoma Health Sciences Center PO Box 26901 Health Sciences and Services Bldg Oklahoma City OK 73190 736017987 IRC 115 145570 CF CARE CENTER University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 27000 ADULT CARE University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 391600 RESEARCH University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 97200 PILOT STUDY University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 170435 TRAINING University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 460000 RESEARCH CENTER University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 148848 QUALITY IMPROVEMENT University of Rochester 1325 Mt Hope Avenue Rochester NY 14642 160743209 501c(3) 91590 CF CARE CENTER University of South Carolina Research Foundation 901 Sumter Street Suite 260 Columbia SC 29208 570967350 501c(3) 41865 CF CARE CENTER University of South Florida Department of Pediatrics Suite 501 Tampa FL 33606 593102112 IRC 115 27100 CF CARE CENTER University of Southern California USC Contracts and Grants 17 Davis Boulevard Suite 200 Los Angeles CA 900339002 951642394 501c(3) 97097 RESEARCH University of Southern California Keck School of M Contracts and Grants Office 1540 Alcazar Street LOS ANGELES CA 90033 951642394 501c(3) 95560 CF CARE CENTER University of Tennessee Medical Center 1940 Alcoa Hwy 1540 Alcazar Street CHP-100 Knoxville TN 37920 311626179 501c(3) 38745 CF CARE CENTER University of Tennessee 62 S Dunlap Suite E-110 Memphis TN 38163 626001636 IRC 115 31375 CF CARE CENTER University of Texas Health Center at Tyler 11937 US Hwy 271 Tyler TX 75708 756001354 501c(3) 44620 CF CARE CENTER University of Texas Health Science Center at San A Mail Code 7828 San Antonio TX 782293900 741586031 501c(3) 38500 CF CARE CENTER University of Utah 406 Park Bldg 7703 Floyd Curl Drive Salt Lake City UT 84112 876000525 501c(3) 233570 CF CARE CENTER University of Utah 406 Park Bldg Salt Lake City UT 84112 876000525 501c(3) 100000 RESEARCH University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 IRC 115 101175 CF CARE CENTER University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 IRC 115 296200 RESEARCH University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 IRC 115 42750 RESEARCH STUDY University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 IRC 115 120500 TRAINING University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 IRC 115 500000 RESEARCH CENTER University of Washington 4333 Brooklyn Avenue NE Box 359472 Seattle WA 981959472 916001537 IRC 115 149721 QUALITY IMPROVEMENT UT Southwestern Medical Center at Dallas 5323 Harry Hines Blvd Dallas TX 753909040 756002868 IRC 115 91530 ADULT CARE UT Southwestern Medical Center at Dallas 5323 Harry Hines Blvd Dallas TX 753909040 756002868 IRC 115 221315 CF CARE CENTER UT Southwestern Medical Center at Dallas 5323 Harry Hines Blvd Dallas TX 753909040 756002868 IRC 115 43200 PILOT STUDY UT Southwestern Medical Center at Dallas 5323 Harry Hines Blvd Dallas TX 753909040 756002868 IRC 115 23760 QUALITY IMPROVEMENT Vanderbilt University PO Box 30195 Nashville TN 372410195 620476822 501c(3) 207425 CF CARE CENTER Vanderbilt University PO Box 30195 Nashville TN 372410195 620476822 501c(3) 43850 RESEARCH STUDY Via Christi Regional Medical Center CF Clinic 3311 East Murdock Street Wichita KS 67218 481172106 501c(3) 59275 CF CARE CENTER Virginia Commonwealth University Box 2506 - VCU Station Richmond VA 232842506 546001758 501c(3) 73620 CF CARE CENTER Virginia Commonwealth University Box 2506 - VCU Station Richmond VA 232842506 546001758 501c(3) 81000 QUALITY IMPROVEMENT Wake Forest University Health Sciences Medical Center Blvd WinstonSalem NC 271571064 223849199 501c(3) 69560 CF CARE CENTER Wake Forest University Health Sciences Medical Center Blvd WinstonSalem NC 271571064 223849199 501c(3) 94016 RESEARCH Wake Forest University Health Sciences Medical Center Blvd WinstonSalem NC 271571064 223849199 501c(3) 43200 PILOT STUDY Washington University Campus Box 1034 St Louis MO 631121408 430653611 501c(3) 216820 CF CARE CENTER Washington University Campus Box 1034 700 Rosedale Avenue St Louis MO 631121408 430653611 501c(3) 21591 QUALITY IMPROVEMENT Wayne State University Grants Contracts Office III 700 Rosedale Avenue Detroit MI 48201 386028425 501c(3) 44620 CF CARE CENTER West Virginia University Research Corporation West Virginia University Research and Sponsored Programs Morgantown WV 265066001 550665758 501c(3) 68946 CF CARE CENTER Yale University 47 College Street Suite 203 PO Box 6001 New Haven CT 065208047 060646973 501c(3) 59374 ADULT CARE Yale University 47 College Street Suite 203 New Haven CT 065208047 060646973 501c(3) 73625 CF CARE CENTER Yale University 47 College Street Suite 203 New Haven CT 065208047 060646973 501c(3) 97200 RESEARCH Yale University 47 College Street Suite 203 PO Box 208047 New Haven CT 065208047 060646973 501c(3) 43200 PILOT STUDY 172 8 PATIENT ASSISTANCE PROGRAM 1167 1813694 FELLOWSHIPS 4 18008 PROCEDURES FOR MONITORING GRANT FUNDS INSIDE OF THE U.S. PART 1, 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 PRESIDENT / CEO 399993 200570 233330 114924 16814 8060 145953 58825 19255 0 815345 382379 65086 32057 C Richard Mattingly EXEC VP, COO & SECRETARY 399981 0 222762 0 23012 0 173105 0 16161 0 835021 0 72377 0 Preston Campbell MD EXEC VP OF MEDICAL AFFAIRS 261919 133626 151307 74524 19649 5775 108170 40216 26436 0 567481 254141 47912 23599 Vera H Twigg EXECUTIVE VP AND CFO 300886 0 139087 0 21930 0 59013 0 26436 0 547352 0 30185 0 Maureen Fraser VP OF FIELD MANAGEMENT 196495 0 20672 0 2788 0 22127 0 18255 0 260337 0 0 0 Daniel Klein SR VP, PATIENT ACCESS PROGRAMS 253270 0 37689 0 3188 0 26520 0 41461 0 362128 0 0 0 Christopher Penland PhD VP OF RESEARCH 160625 28345 38695 2400 612 0 23688 0 25790 0 249410 30745 0 0 David McLoughlin SR. VP OF OPERATIONS 194290 59132 37828 10707 1242 0 31520 0 26136 0 291016 69839 0 0 Glen Goldmark VP OF HUMAN RESOURCES 196260 0 40188 0 2790 0 29369 0 17655 0 286262 0 0 0 Mary Dwight SVP POLICY & COMM AFFAIRS 185223 0 36276 0 376 0 28626 0 31436 0 281937 0 0 0 SUPPLEMENTAL NONQUALIFIED RETIREMENT PLAN 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 the 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. 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. COMPENSATION Cystic Fibrosis Foundation - Headquarters. (A) Name: R. Beall, Ph.D.; (B)(i) Base Compensation: base salary - $384,583, 401(k) bonus - $15,410; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $121,344, long-term incentive plan payment, which was previously reported (6) - $65,086, long-term incentive plan treatment award (3) - $46,900; (B)(iii) Other Reportable Compensation: health insurance benefit - $3,165, automobile allowance - $4,824, other benefits - $8,825; (C) Deferred Compensation: retirement benefit (2) - $26,520, long-term incentive plan benefit (6) - $53,773, SERP (4) - $65,660; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $12,031, employee contribution to flexible spending account benefit - $2,500, employee contribution to general organization health plan benefit - $4,724 Cystic Fibrosis Foundation Therapeutics, Inc. EIN 91-2059167. (A) Name: R. Beall, Ph.D.; (B)(i) Base Compensation: base salary - $192,980, 401(k) bonus - $7,590; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $59,767, long-term incentive plan payment, which was previously reported (6) - $32,057, long-term incentive plan treatment award (3) - $23,100; (B)(iii) Other Reportable Compensation: health insurance benefit - $1,559, automobile allowance - $2,376, other benefits - $4,125 (C) Deferred Compensation: long-term incentive plan benefit (6) - $26,485, SERP (4) - $32,340; (D) Nontaxable Benefits: $0 Cystic Fibrosis Foundation - Headquarters. (A) Name: P. Campbell, M.D.; (B)(i) Base Compensation: base salary - $261,919; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $69,894, long-term incentive plan payment, which was previously reported (6) - $47,912, long-term incentive plan treatment award (3) - $33,500; (B)(iii) Other Reportable Compensation: other benefits including taxable general organization group term life insurance premium - $7,924, Section 457(b) Plan (5) - $11,725; (C) Deferred Compensation: retirement benefit (2) - $26,520, long-term incentive plan benefit (6) - $39,099, SERP (4) - $42,551; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $17,053, employee contribution to flexible spending account benefit - $2,500, employee contribution to general organization health plan benefit - $6,883 Cystic Fibrosis Foundation Therapeutics, Inc. EIN 91-2059167. (A) Name: P. Campbell, M.D.; (B)(i) Base Compensation: base salary - $133,626; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $34,426, long-term incentive plan payment, which was previously reported (6) - $23,599, long-term incentive plan treatment award (3) - $16,500; (B)(iii) Other Reportable Compensation: Section 457(b) Plan (5) - $5,775; (C) Deferred Compensation: long-term incentive plan benefit (6) - $19,258, SERP (4) - $20,958; (D) Nontaxable Benefits: $0 Cystic Fibrosis Foundation - Headquarters. (A) Name: R. Mattingly; (B)(i) Base Compensation: base salary - $399,981; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $100,385, long-term incentive plan payment, which was previously reported (6) - $72,377, long-term incentive plan treatment award (3) - $50,000; (B)(iii) Other Reportable Compensation: Section 457(b) Plan (5) - $17,500; other benefits including taxable general organization group term life insurance premium - $5,512; (C) Deferred Compensation: retirement benefit (2) - $26,520, long-term incentive plan benefit (6) - $58,531, SERP (4) - $88,054; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $10,760, employee contribution to flexible spending account benefit - $1,600, employee contribution to general organization health plan benefit - $3,801 Cystic Fibrosis Foundation - Headquarters. (A) Name: V. Twigg; (B)(i) Base Compensation: base salary - $300,886; (B)(ii) Bonus & Incentive Compensation: annual incentive plan benefit (1) - $73,902, long-term incentive plan payment, which was previously reported (6) - $30,185, long-term incentive plan treatment award (3) - $35,000; (B)(iii) Other Reportable Compensation: other benefits including taxable general organization group term life insurance premium - $4,430, Section 457(b) Plan (5) - $17,500; (C) Deferred Compensation: retirement benefit (2) - $26,520, long-term incentive plan benefit (6) - $27,386, SERP (4) - $5,107; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $17,053, employee contribution to flexible spending account benefit - $2,500, employee contribution to general organization health plan benefit - $6,883 (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 2014 Plan Year. (3) This is an award under a plan that pays a specified dollar amount only if and when the FDA approves certain pre-specified types of therapies. In the event the employee terminates employment prior to FDA approval of the specified therapy type and payment of the award, the employee will forfeit his or her right to receive payment, unless termination is due to retirement or disability. The plan will terminate on December 31, 2018 unless the Foundation determines to extend the plan. (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 $17,500). 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 on this Form 990 reflect an estimate of the portion of each award that the executive accrued under the Plan for performance in 2014 (i.e., with respect to the 2012-2014, 2013-2015 and the 2014-2017 performance periods), but the amounts reported have not been earned, awarded or paid under the Plan. The individual must be employed on 12/31/15 and 12/31/16 to be eligible to receive full payment of the award for the 2013-2015, and the 2014-2016 performance periods, respectively. The award relating to the 3-year performance period ending 12/31/13 was paid in 2014, and is properly reported again (as compensation) on this Form 990. 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 28,600 people with CF were served in 2014, including approximately 840 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 2014 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 curing cystic fibrosis and providing all people with the disease the opportunity to lead full, productive lives. The independent Compensation Committee of the CF Foundation's Board of Trustees follows the process described in the IRS intermediate sanctions rules when determining compensation. Specifically, the Committee: (1) Is composed entirely of non-employee volunteer directors who have no familial, business or significant personal relationships with the CF Foundation or its executives. (2) Assesses the short-term and long-term contribution and performance of each executive in meeting very definitive and quantifiable objectives focused on the CF Foundation's mission success. (3) Engages an independent compensation consulting firm to compile appropriate comparability data (including compensation market information for peers with whom the CF Foundation competes for executive talent) for Committee reliance. The Committee meets with representatives of the consulting firm to review this data in detail. (4) Reviews all elements of each executive's total compensation, including but not limited to base salary, bonuses, perquisites, fringe benefits, and incentive and deferred compensation arrangements. Upon the executive's hire, and at each point in time thereafter at which a new or revised compensation arrangement is under consideration with respect to the executive, the Committee meets with its independent compensation consulting firm before the arrangement is implemented to evaluate the reasonableness of the arrangement by comparing both the arrangement itself and the executive's entire compensation package to compensation packages paid by similarly situated organizations for functionally comparable positions. (5) Documents, concurrently with its determination, the basis for its determination in the minutes of its meeting. These minutes are reviewed, revised if necessary and approved at the following meeting of the Committee. (6) Obtains a written legal opinion concerning the Committee's compliance with the IRS intermediate sanctions rules. The process described above was used to establish compensation for the following officers or key employees of the organization: President & CEO Executive Vice President & COO Executive Vice President for Medical Affairs Executive Vice President & CFO Vice President of Field Management The process was last undertaken in 2014. 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 2014. The Board and Officer Conflict of Interest Policy and the audited financial statements were available on the Foundation's website, www.cff.org during 2014. COMPENSATION OF OFFICERS, DIRECTORS, TRUSTEES, KEY EMPLOYEES, ETC PART VII, SECTION A: NAME AND TITLE MICHAEL L. BEATTY ESQ., 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 5 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 LOUIS DEFALCO, 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 J. GRAY ESQ., VICE CHAIRMAN AVG HRS WORKED 5 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 CAROLE B. GRIEGO, M.D., 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, LEADERSHIP COUNCIL CHAIR AVG HRS WORKED 5 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 8 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 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 5 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 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 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 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, EXEC VICE CHAIRMAN AVG HRS WORKED 5 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, ADULT ADVISORY COUNCIL CHAIR AVG HRS WORKED 5 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., PRES/CEO AVG HRS WORKED 36 HRS AVG HRS WORKED - RELATED 24 HRS POSITION INDIVIDUAL TRUSTEE & OFFICER REPORTABLE COMP FROM THE ORG 650,137 REPORTABLE COMP FROM RELATED ORG 323,554 EST. AMT OF OTHER COMP FROM THE ORG 224,033 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 645,755 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 189,266 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 432,875 REPORTABLE COMP FROM RELATED ORG 213,925 EST. AMT OF OTHER COMP FROM THE ORG 174,822 NAME AND TITLE VERA H. TWIGG, EXECUTIVE VP & CFO AVG HRS WORKED 50 HRS AVG HRS WORKED - RELATED 10 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 461,903 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 85,449 NAME AND TITLE MAUREEN FRASER, VP OF FIELD MGMT AVG HRS WORKED 50 HRS AVG HRS WORKED - RELATED NOT APPLICABLE POSITION KEY EMPLOYEE REPORTABLE COMP FROM THE ORG 219,955 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 40,382 NAME AND TITLE DANIEL KLEIN, SR VP PATIENT ACCESS PROGRAMS AVG HRS WORKED 50 HRS AVG HRS WORKED - RELATED NOT APPLICABLE POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 294,147 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 67,981 NAME AND TITLE CHRISTOPHER PENLAND, PH.D., VP OF RESEARCH AVG HRS WORKED 35 HRS AVG HRS WORKED - RELATED 15 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 199,932 REPORTABLE COMP FROM RELATED ORG 30,745 EST. AMT OF OTHER COMP FROM THE ORG 49,478 NAME AND TITLE DAVID MCLOUGHLIN, SR. VP OF OPS AVG HRS WORKED 35 HRS AVG HRS WORKED - RELATED 15 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 233,360 REPORTABLE COMP FROM RELATED ORG 69,839 EST. AMT OF OTHER COMP FROM THE ORG 57,656 NAME AND TITLE GLEN GOLDMARK, VP OF HUMAN RES. AVG HRS WORKED 50 HRS AVG HRS WORKED - RELATED NOT APPLICABLE POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 239,238 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 47,024 NAME AND TITLE MARY DWIGHT, SVP POLICY AND COMMUNITY AFFAIRS AVG HRS WORKED 50 HRS AVG HRS WORKED - RELATED NOT APPLICABLE POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 221,875 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 60,062 TOTAL REPORTABLE COMP FROM THE ORG 3,599,177 TOTAL REPORTABLE COMP FROM RELATED ORG 638,063 TOTAL EST. AMT OF OTHER COMP FROM THE ORG 996,153 UNRESTRICTED NET ASSETS - BOARD DESIGNATED FORM 990, PART X, LINE 27 The Foundation's unrestricted net assets totalled $3,796,361,145 as of December 31, 2014. Of this amount, the Foundation's Board of Trustees has designated $3,300,000,000 to be spent in support of the mission of the Foundation over the long term. SIGNIFICANT DIVERSION OF THE ORGANIZATION'S ASSETS Part VI, Section A, Line 5 (Page 6 Core Form) During the year, the organization's internal controls detected misappropriations of Foundation assets, which amounted to approximately $1,470,000. The misappropriations were carried out from 2010 to September 2014, with approximately $1,233,000 of the losses incurred between January 2013 and September 2014. These misappropriations involved IT equipment that was stolen by two employees, and fraudulent invoicing by a vendor and employee. Upon discovery, the Foundation immediately notified the Audit Committee of the Board of Trustees who engaged an independent law firm to investigate the schemes. The individuals involved are no longer employed by the Foundation and the Foundation has terminated its business relationship with the vendor involved in the fraudulent invoicing. The Foundation is cooperating with law enforcement officials in support of prosecution of any individuals who have violated the law. The Foundation has filed claims with its insurance company and corrective actions have been instituted. cystic fibrosis patient assistance fdn 6931 arlington rd bethesda MD 20814 900350985 patient asst DE 1903128 4023017 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 false false true false false false false false false false false false true true false false false false CYSTIC FIBROSIS FOUNDATION THERAPEUTICS C 3180372057 FMV CYSTIC FIBROSIS FOUNDATION GROUP c 90795086 FMV CYSTIC FIBROSIS FOUNDATION THERAPEUTICS N 1330603 COST CYSTIC FIBROSIS FOUNDATION THERAPEUTICS O 3615373 COST