2012-08-23T16:22:06-05:00 2011-12-31 ARGY WILTSE & ROBINSON PC 8405 GREENSBORO DRIVE 7TH FLOOR MCLEAN VA 22102 990 2011-01-01 131930701 CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS % ROBERT J BEALL PHD CYST 3019514422 6931 ARLINGTON ROAD BETHESDA MD 20814 ROBERT J BEALL PHD 2012-08-23 true DAVID J TRIMNER 7038930600 2011 2016-02-24 21:20:13Z ROBERT J BEALL PHD 6931 ARLINGTON ROAD STE 200 BETHESDA MD 20814 241014092 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. 18 17 319 250000 0 0 106799244 101016403 21411864 26269945 5617212 7266699 639501 2027137 134467821 136580184 21487961 74501565 0 0 24796813 27272258 0 0 10319779 21688722 23947791 67973496 125721614 66494325 10858570 221040934 216321364 32747225 40872449 188293709 175448915 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 87231930 73296331 1648930 MEDICAL PROGRAMS - SINCE 1955, THE CYSTIC FIBROSIS FOUNDATION HAS BEEN DEDICATED TO CURING AND CONTROLLING CYSTIC FIBROSIS (CF). 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. A) IN 2011, PHASE 3 CLINICAL TRIALS OF VX-770 SHOWED PROFOUND RESULTS. THOSE RECEIVING THE DRUG DEMONSTRATED THE HIGHEST INCREASE ON A LUNG FUNCTION TEST SEEN IN ANY CLINICAL TRIAL OF A CF DRUG. A NEW DRUG APPLICATION TO THE FDA FOR VX-770 UNDER THE TRADE NAME KALYDECO WAS SUBMITTED BY VERTEX PHARMACEUTICALS. B) RESULTS FROM THE FIRST PART OF AN ONGOING PHASE 2 TRIAL TESTING KALYDECO IN COMBINATION WITH VX-809 SHOW PROMISING RESULTS IN PEOPLE WITH THE MOST COMMON CF MUTATION, DELTA F508. C) THE MEDIAN PREDICTED AGE OF SURVIVAL FOR A PERSON WITH CF IS IN THE LATE 30S. MORE THAN 45 PERCENT OF PEOPLE WITH CF ARE AGE 18 OR OLDER. D) MEDICAL PROGRAMS CONSIST OF APPROXIMATELY 360 GRANTS AND OTHER COSTS TO SUPPORT SCIENTIFIC STUDIES/INVESTIGATIONS AND CYSTIC FIBROSIS CENTERS. APPROXIMATELY 220 GRANTS TOTALING $12.5 MILLION WERE AWARDED TO CYSTIC FIBROSIS CARE CENTERS SERVING APPROXIMATELY 27,000 PATIENTS. 10499220 1205234 24621015 CYSTIC FIBROSIS FOUNDATION PHARMACY, LLC (CFFP) PROVIDES PROGRAM MANAGEMENT SERVICES TO CYSTIC FIBROSIS PATIENT ASSISTANCE FOUNDATION, LLC (CFPAF) AND PROGRAM MANAGEMENT SERVICES AND LICENSING TO CYSTIC FIBROSIS SERVICES, INC. (CFS). IT PROVIDES AVAILABILITY AND ACCESS TO CYSTIC FIBROSIS MEDICATIONS, AS WELL AS ASSISTANCE WITH THE COMPLEX INSURANCE ISSUES FACED IN OBTAINING THESE MEDICATIONS. CFFP PROVIDES PERSONALIZED SERVICE, PATIENT ADVOCACY, PATIENT EDUCATION AND REIMBURSEMENT SUPPORT TO THE CF COMMUNITY. IN 2011, CFFP SERVED 10,352 PATIENTS. CFFP FULFILLED 82,586 ORDERS TO CF PATIENTS UNDER MANUFACTURER PROGRAMS TO ASSIST PATIENTS IN NEED. CFFP STAFF ASSISTED CF PATIENTS WITH 188,592 PRESCRIPTIONS IN 2011 BY FILING PRIMARY, SECONDARY AND TERTIARY INSURANCE CLAIMS, AS NEEDED. CYSTIC FIBROSIS PATIENT ASSISTANCE FOUNDATION, LLC (CFPAF) RESPONDED TO 6,817 CALLS FOR ASSISTANCE AND PROVIDED $1,205,234 IN PATIENT ASSISTANCE GRANTS AND CASE MANAGEMENT TO 853 CF PATIENTS IN NEED DURING 2011. 9558413 0 0 dPUBLIC 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 2011, THERE WERE 23 PUBLICATIONS, 18 WEBCASTS AND 37 VIDEOS PRODUCED AND MADE AVAILABLE FOR PATIENTS, FAMILIES, MEDICAL PROFESSIONALS, AND THE GENERAL PUBLIC. YEAR-ROUND 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 2011, OVER 2,180,000 UNIQUE VISITORS CAME TO THE ORGANIZATION'S WEBSITE. 2724489 0 0 110014052 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 true false false false true true true true false false true 195 0 319 true false false false false false false false false false false X 18 17 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 J Taylor Crandall 3.0 X 0 0 0 Michael L Beatty 3.0 X 0 0 0 Richard L Dandurand 5.0 X 0 0 0 Richard J Gray 3.0 X 0 0 0 Barry M Gump 3.0 X 0 0 0 Susan L Hook 5.0 X 0 0 0 Catherine C McLoud 7.0 X 0 0 0 Chad T Moore 3.0 X 0 0 0 David A Mount 5.0 X 0 0 0 Gary B Sabin 5.0 X 0 0 0 Christie L Shaffer PHD 3.0 X 0 0 0 Steven Shak MD 3.0 X 0 0 0 Charles J Thayer 3.0 X 0 0 0 Theodore J Torphy PhD 3.0 X 0 0 0 Amy S Weinberg 3.0 X 0 0 0 Paul W Whetsell 5.0 X 0 0 0 KC Bryan White 3.0 X 0 0 0 Robert J Beall PhD 34.0 X X 477065 234488 362172 ROBERT KAPLAN TRUSTEE 3.0 X 0 0 0 C Richard Mattingly 50.0 X 475320 0 284459 Preston W Campbell MD 34.0 X 310778 156360 268893 Vera H Twigg 50.0 X 325228 0 119955 Ann Palmer 50.0 X 233610 0 42419 Daniel Klein 50.0 X 248172 0 29128 Gregory August 50.0 X 218198 0 44500 David McLoughlin 50.0 X 267117 0 49005 Glen Goldmark 50.0 X 213637 0 39578 Amy DeMaria 50.0 X 212990 0 28682 Mary Dwight 50.0 X 195488 0 50744 3177603 390848 1319535 67 false true false ICS CORPORATION 2225 RICHMOND ST PHILADELPHIA PA 19125 MAILSHOP 1452328 HUB LABELS 18223 SHAWLEY DRIVE HAGERSTOWN MD 21740 PRINTING 936511 DIAMONDBACK DIRECT 844 RITCHIE HWY SEVERNA PARK MD 21146 MAILSHOP 850497 RMI DIRECT MARKETING 42 OLD RIDGEWAY ROAD DANBURY CT 06810 LIST MANAGEMENT 550440 ITS RESOURCES LLC 7 HARVARD COURT ROCKVILLE MD 20850 IT SERVICES 464713 46 81863236 19153167 532764 101016403 SCIENTIFIC CONFERENCE 611600 1648930 1648930 PROGRAM MANAGEMENT FEES 541900 8920638 8920638 CALL CENTER 541900 1938316 1938316 LICENSE FEES 900003 13762061 13762061 26269945 3438058 3438058 0 1450872 1450872 108262549 104433908 3828641 3828641 3828641 0 0 0 LIST RENTAL 533110 576265 576265 576265 136580184 12507884 23055897 73053292 73053292 1212242 1212242 236031 236031 0 2331798 1725408 334759 271631 0 20131956 14896590 2890194 2345172 1210677 895837 173808 141032 2003186 1482253 287582 233351 1594641 1214254 191535 188852 0 380252 324835 55417 0 180167 59890 120277 0 293211 293211 0 0 0 102488 0 102488 0 2965468 1999889 0 965579 6422 3917 1028 1477 1955394 1768900 83822 102672 3584763 2824293 271911 488559 0 1505673 1190541 198720 116412 786559 694250 21990 70319 0 2394030 2358973 12874 22183 0 0 485741 426836 29705 29200 408836 338988 24428 45420 DIRECT MAIL PRINTING 3585707 1056349 0 2529358 DIRECT MAIL POSTAGE 3222034 949211 0 2272823 TRAINING 366080 281331 38592 46157 MAILING LIST RENTAL 574881 169360 0 405521 1150085 557371 548653 44061 125721614 110014052 5387783 10319779 X 9652139 2843520 0 6808617 0 0 10129208 29623023 23195345 17362252 3394223 3775431 0 0 0 0 0 0 513317 462935 1074652 1615334 8356373 5776309 1954050 2580064 99508241 117635184 37241095 42519485 0 0 0 0 44030803 747656 221040934 216321364 10639429 12344388 19417980 19846941 2689816 3567174 0 0 0 0 0 0 0 0 0 0 0 5113946 32747225 40872449 X 165901802 154243452 19046213 17895922 3345694 3309541 188293709 175448915 221040934 216321364 X 10858570 -23703364 X false true true X false X false false false 125762419 112573276 94548345 106799244 101016043 540699327 125762419 112573276 94548345 106799244 101016043 540699327 540699327 9254984 5292496 2946628 2848122 4888930 25231160 0 1916 0 0 0 1916 1086167 998418 636827 467607 576265 3765284 569697687 85445190 0.94910 0.94940 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 INVESTIGATIVE 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) (A DISREGARDED ENTITY OF THE ORGANIZATION) TO CYSTIC FIBROSIS SERVICES, INC. (A SUBSIDIARY OF CFFP). LICENSE FEES ARE PAID BY CYSTIC FIBROSIS SERVICES, INC. TO CFFP, LLC, 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 IS TO OPERATE AND MANAGE A SPECIALTY PHARMACY THAT SELLS CYSTIC FIBROSIS RELATED PRESCRIPTION PHARMACEUTICALS, RELATED DURABLE MEDICAL EQUIPMENT AND NON-PRESCRIPTION CYSTIC FIBROSIS RELATED VITAMINS AND SUPPLEMENTS. CFS SERVES PATIENTS WHO HAVE BEEN DIAGNOSED WITH CYSTIC FIBSOSIS. 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. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 91903 480610 572513 125149101 125721614 1000000 250000 1000000 1000000 1000000 1000000 4000000 6000000 150679 165973 257023 572513 1146188 250000 250000 250000 250000 1000000 1500000 14000 14000 11250 91903 131153 1529793 506968 1022825 6826580 5269341 1557239 2580064 OTHER INVESTMENT FUNDS 9643597 F MARKETABLE ALT. INV. FUNDS 29566347 F INTEREST IN PERPETUAL TRUSTS 3309541 F 42519485 0 INTERCOMPANY PAYABLE 5113946 5113946 true North America 0 0 Grantmaking NONE 192831 Europe (Including Iceland and Greenland) 0 0 Grantmaking none 43200 0 0 0 0 236031 236031 North America RESEARCH 96166 CHECK North America PILOT STUDIES 96665 CHECK Europe/Iceland/Greenland PILOT STUDIES 43200 WIRE 3 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 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. true Advocate Hope Children's Hospital 4440 West 95th Street Oak Lawn IL 60453 362169147 501c(3) 44097 CF CARE CENTER Agile Sciences Inc 840 Main Campus Drive Lab 3550 Raleigh NC 27606 208755458 CORP 75000 RESEARCH Albany Medical College Elsmere A-107 Albany NY 12208 141338310 501c(3) 91870 CF CARE CENTER Alfred I Dupont Institute of the Nemours Foundati 1600 Rockland Road Wilmington DE 19899 590634433 501c(3) 48935 CF CARE CENTER All Children's Hospital Dept 9010 PO Box 269 St Petersburg FL 33731 590683252 501c(3) 98890 CF CARE CENTER Arizona Board of Regents University of Arizona Sponsored Projects Services PO Box 31020 Tucson AZ 857223308 742652689 501c(3) 54685 CF CARE CENTER Arizona Board of Regents University of Arizona Sponsored Projects Services 888 N Euclid Room 510 Tucson AZ 857223308 742652689 501c(3) 27000 QUALITY IMPROVEMENT Arkansas Children's Hospital Research Institute I 800 Marshall Street 888 N Euclid Room 510 Little Rock AR 72202 710694931 501c(3) 76795 CF CARE CENTER Asthma and Allergy Specialists PA 411 Billings Road Slot 512-17 Charlotte NC 28211 561913043 CORP 33140 CF CARE CENTER Atlantic Health System 100 Madison Avenue Suite 104 Morristown NJ 07962 202088165 501c(3) 68435 CF CARE CENTER Atlantic Health System 100 Madison Avenue Morristown NJ 07962 521958352 501c(3) 21600 QUALITY IMPROVEMENT Baylor College of Medicine PO Box 1 Houston TX 77212 741613878 501c(3) 228370 CF CARE CENTER Baystate Medical Center (95-196) 759 Chestnut Street Springfield MA 01199 042790311 501c(3) 30655 CF CARE CENTER Beth Israel Medical Center Office of Grants Contracts New York NY 10038 135564934 501c(3) 61470 CF CARE CENTER Billings Clinic 2800 10th Ave North 160 Water Street 24th Floor Billings MT 59107 810231784 501c(3) 35000 CF CARE CENTER Board of Trustees Southern Illinois University Division of Pulmonary Medicine Springfield IL 62794 376005961 501c(3) 6350 CF CARE CENTER California Pacific Medical Center Research Institu 2200 Webster Street Room 405 PO Box 19636 San Francisco CA 94115 940562680 501c(3) 17135 CF CARE CENTER CAMC Health Education and Research Institute PO Box 765 Charleston WV 25323 550753754 501c(3) 16335 CF CARE CENTER Carle FOUNDATION HOSPITAL Department of Pediatrics Urbana IL 61801 371119538 501c(3) 10535 CF CARE CENTER Case Western Reserve University 10900 Euclid Avenue 602 W University Avenue Cleveland OH 441067015 341018992 501c(3) 349281 RESEARCH CENTERS Case Western Reserve University 10900 Euclid Avenue Cleveland OH 441067015 341018992 501c(3) 194400 RESEARCH Case Western Reserve University 10900 Euclid Avenue Cleveland OH 441067015 341018992 501c(3) 43600 RESEARCH STUDIES Case Western Reserve University 10900 Euclid Avenue Cleveland OH 441067015 341018992 501c(3) 43200 PILOT STUDIES Central Florida Pulmonary Group 326 North Mills Avenue Orlando FL 32803 591760017 CORP 38305 CF CARE CENTER Children's & Women's Physicians of Westchester Pediatric Pulmonology Valhalla NY 10595 133956599 LLP 70345 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 55404 411754276 501c(3) 36288 QUALITY IMPROVEMENT Children's Healthcare of Atlanta 1001 Johnson Ferry Road North 32-2210 Atlanta GA 30342 582367819 501c(3) 78095 CF CARE CENTER Children's Hospital & Research Center at Oakland 747 52nd Street Oakland CA 94609 940382330 501c(3) 33260 CF CARE CENTER Children's Hospital Central California 9300 Valley Childrens Place Madera CA 93638 941294954 501c(3) 54380 CF CARE CENTER Children's Hospital Colorado 13123 East 16th Ave Aurora CO 80045 840166760 501c(3) 175855 CF CARE CENTER Children's Hospital Corporation 300 Longwood Ave Boston MA 021155737 042774441 501c(3) 246955 CF CARE CENTER Children's Hospital Corporation 300 Longwood Ave Boston MA 021155737 042774441 501c(3) 100250 TRAINING Children's Hospital Corporation 300 Longwood Ave Boston MA 021155737 042774441 501c(3) 43600 RESEARCH STUDIES Children's Hospital Corporation 300 Longwood Ave Boston MA 021155737 042774441 501c(3) 21600 QUALITY IMPROVEMENT Children's Hospital Medical Center Akron One Perkins Square Akron OH 443081062 340714357 501c(3) 108695 CF CARE CENTER Children's Hospital Medical Center Akron One Perkins Square Akron OH 443081062 340714357 501c(3) 27000 QUALITY IMPROVEMENT Children's Hospital Medical Center Cincinnati Research Accounting Cincinnati OH 45229 310833936 501c(3) 375920 RESEARCH CENTERS Children's Hospital Medical Center Cincinnati Research Accounting 3333 Burnet Avenue Cincinnati OH 45229 310833936 501c(3) 106530 CF CARE CENTER Children's Hospital Medical Center Cincinnati Research Accounting 3333 Burnet Avenue Cincinnati OH 45229 310833936 501c(3) 97750 TRAINING Children's Hospital of Michigan 3663 Woodward Ave S Ste 200 3333 Burnet Avenue Detroit MI 48201 381357994 501c(3) 73040 CF CARE CENTER Children's Hospital of Orange County PO Box 5700 Orange CA 926135700 952321786 501c(3) 43625 CF CARE CENTER Children's Hospital of Pittsburgh 3705 Fifth Avenue Pittsburgh PA 15213 250402510 501c(3) 216050 CF CARE CENTER Children's Hospital of Pittsburgh 3705 Fifth Avenue Pittsburgh PA 15213 250402510 501c(3) 48000 TRAINING Children's Hospital Los Angeles Research Institute Los Angeles CA 90027 951690977 501c(3) 68420 CF CARE CENTER Children's Lung Specialists 3838 Meadows Lane 4650 Sunset Blvd Las Vegas NV 89107 880271963 501c(3) 76075 CF CARE CENTER Children's Medical Center One Childrens Plaza Dayton OH 454041815 310672132 501c(3) 78210 CF CARE CENTER Children's Memorial Hospital 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501c(3) 120538 CF CARE CENTER Children's Memorial Hospital 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501c(3) 100250 TRAINING Children's Memorial Hospital 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501c(3) 96851 RESEARCH Children's Memorial Hospital 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501c(3) 48600 QUALITY IMPROVEMENT Children's Memorial Hospital 2300 Childrens Plaza - Box 205 Chicago IL 60614 362170833 501c(3) 43200 PILOT STUDIES Children's Mercy Hospital 2401 Gillham Road Kansas City MO 64108 440605376 501c(3) 112355 CF CARE CENTER Children's National Medical Center 111 Michigan Avenue NW Washington DC 20010 521640403 501c(3) 75395 CF CARE CENTER Children's National Medical Center 111 Michigan Avenue NW Washington DC 20010 521654453 501c(3) 21600 QUALITY IMPROVEMENT Children's Respiratory Center 58 Bear Drive Greenville SC 29605 570971539 CORP 25780 CF CARE CENTER Children's Specialty Group PLLC 601 Childrens Lane Norfolk VA 23507 541871633 501c(3) 74770 CF CARE CENTER Christus Santa Rosa Healthcare 333 North Santa Rosa San Antonio TX 78207 741109665 501c(3) 86985 CF CARE CENTER Colorado State University Cashier's Office Sponsored Programs Fort Collins CO 805232002 846000545 501c(3) 43186 PILOT STUDIES Connecticut Children's Medical Center 282 Washington Street Campus Delivery Box 2002 Hartford CT 06106 060646755 501c(3) 46670 CF CARE CENTER Cook Children's Medical Center CF Center 801 Seventh Avenue Ft Worth TX 76104 752051646 501c(3) 117630 CF CARE CENTER Daughters of Charity Health Services of Austin 4900 Mueller Blvd Austin TX 78723 741109643 501c(3) 64470 CF CARE CENTER Drexel University College of Medicine St Christophers Hospital for Chil Philadelphia PA 191291191 232979433 501c(3) 77870 CF CARE CENTER Drexel University College of Medicine 245 N 15th Street Philadelphia PA 191291191 232979433 501c(3) 21600 QUALITY IMPROVEMENT Duke University Medical Center Office of Sponsored Programs Mailstop 107 Durham NC 27710 560532129 501c(3) 55235 CF CARE CENTER East Tennessee Children's Hospital Association I 2100 Clinch Avenue 310 Box 104025 Knoxville TN 37916 626002604 501c(3) 68685 CF CARE CENTER Eastern Maine Medical Center 417 State Street Bangor ME 04401 010211501 501c(3) 25375 CF CARE CENTER Emory University 1380 South Oxford Road Suite 305 Atlanta GA 30322 580566256 501c(3) 202790 CF CARE CENTER Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501c(3) 48000 TRAINING Emory University 1380 South Oxford Road Atlanta GA 30322 580566256 501c(3) 14035 ADULT CARE Erlanger Health System 975 East Third Street Chattanooga TN 37403 626000101 501c(3) 30675 CF CARE CENTER Fletcher Allen Health Care 111 Colchester Ave Burlington VT 05401 030219309 501c(3) 75725 CF CARE CENTER Fletcher Allen Health Care 111 Colchester Ave Burlington VT 05401 030219309 501c(3) 21600 QUALITY IMPROVEMENT Geisinger Medical Center Pediatric Allergy Immunology Pul Danville PA 17822 236291113 501c(3) 52305 CF CARE CENTER Georgia Health Sciences University 1120 15th Street 100 N Academy Drive Augusta GA 309128300 586002053 501c(3) 83305 CF CARE CENTER Good Samaritan Hospital 1000 Montauk Highway New York NY 11795 111888924 501c(3) 5900 CF CARE CENTER Gundersen Lutheran Medical Foundation 1900 South Avenue La Crosse WI 54601 391249705 501c(3) 14445 CF CARE CENTER Hartford Hospital Department of Medicine Hartford CT 06102 060646668 501c(3) 33000 CF CARE CENTER Hartford Hospital Department of Medicine 80 Seymour Street Hartford CT 06102 060646668 501c(3) 27000 ADULT CARE Henry M Jackson Foundation for the advancement of 1404 Rockville Pike Suite 600 80 Seymour Street Rockville MD 20852 521317896 501c(3) 96237 RESEARCH Henry M Jackson Foundation for the advancement of 1404 Rockville Pike Suite 600 Rockville MD 20852 521317896 501c(3) 38505 CF CARE CENTER Indiana University (Indianapolis) Indiana University Research and Spo Indianapolis IN 462025167 356001673 501c(3) 49445 TRAINING Iowa Health Foundation 1440 Ingersoll Avenue Des Moines IA 50309 426004813 501c(3) 169710 CF CARE CENTER Johns Hopkins University School of Medicine 1830 E Monument Street 5th Floor Baltimore MD 21205 520595110 501c(3) 85950 RESEARCH Johns Hopkins University School of Medicine 1830 E Monument Street 5th Floor Baltimore MD 21205 520595110 501c(3) 68250 TRAINING Kaiser Foundation Hospitals Center for Health Res 3800 North Interstate Avenue Portland OR 97227 911105628 501c(3) 27000 ADULT CARE Kaiser Foundation Hospitals Center for Health Res 3800 North Interstate Avenue Portland OR 97227 911105628 501c(3) 24500 CF CARE CENTER Kaiser Foundation Research Institute 1800 Harrison Street OAKLAND CA 94612 941105628 501c(3) 130725 CF CARE CENTER Kaleida Health 219 Bryant Street 16th floor Buffalo NY 14209 161533232 501c(3) 85710 CF CARE CENTER Landon Pediatric Foundation 3291 Loma Vista Road Ventura CA 93003 931097216 501c(3) 21985 CF CARE CENTER Lehigh Valley Hospital Pediatric Specialty Center Building 340 Suite 302 Bethlehem PA 18017 231689692 501c(3) 9314 CF CARE CENTER Loma Linda University Medical Center Coleman Pavilion 2545 Schoenersville Road Loma Linda CA 92350 330672915 501c(3) 49900 CF CARE CENTER Long Beach Memorial Medical Center 2801 Atlantic Avenue PO Box 2000 Long Beach CA 90806 956105984 501c(3) 97490 CF CARE CENTER Long Island Jewish Medical Center Finance Department Westbury NY 11590 112241326 501c(3) 85780 CF CARE CENTER Long Island Jewish Medical Center Finance Department 972 Brushhollow Road Westbury NY 11590 112241326 501c(3) 27000 ADULT CARE Loyola University of Chicago 2160 S First Avenue 972 Brushhollow Road Maywood IL 60153 361408475 501c(3) 31835 CF CARE CENTER LSUMC - Shreveport P O Box 33932 Shreveport LA 71130 720702002 501c(3) 73150 CF CARE CENTER Lutheran Hospital of Indiana 7950 West Jefferson Boulevard FT Wayne IN 46804 351963748 LTD. PTR. 29130 CF CARE CENTER Maine Medical Center 22 Bramhall Street Portland ME 04102 010238552 501c(3) 82865 CF CARE CENTER Marshall University Research Corporation 401 11th Street Suite 1400 Huntington WV 25701 550683361 501c(3) 97200 RESEARCH Marshfield Clinic Research Foundation 1000 North Oak Avenue Marshfield WI 54449 390452970 501c(3) 14392 CF CARE CENTER Mary Bridge Children's Foundation 311 South L Street Tacoma WA 98405 943030039 501c(3) 33440 CF CARE CENTER Medical University of South Carolina PO Box 997 Mailstop B1-OC Charleston SC 29402 576000722 501c(3) 83755 CF CARE CENTER Miami Children's Hospital MOB 203 Miami FL 33155 590638499 501c(3) 26565 CF CARE CENTER Michigan State University 301 Administration Bldg 3200 SW 60th Court East Lansing MI 488241046 386005984 501c(3) 22745 CF CARE CENTER Michigan State UniversityKCMS 1000 Oakland Drive Kalamazoo MI 49001 382015695 501c(3) 24190 CF CARE CENTER Mission Healthcare Foundation Inc 980 Hendersonville Road Asheville NC 28803 561881331 501c(3) 17584 CF CARE CENTER Monmouth Medical Center Foundation 300 Second Avenue Suite C Long Branch NJ 07740 222456079 501c(3) 61185 CF CARE CENTER Monmouth Medical Center Foundation 300 Second Avenue Long Branch NJ 07740 222456079 501c(3) 27000 QUALITY IMPROVEMENT Mount Sinai School of Medicine One Gustave L Levy Place New York NY 10029 136171197 501c(3) 11120 CF CARE CENTER National Jewish Medical and Research Center 1400 Jackson Street Box 3500 Denver CO 80206 742044647 501c(3) 104745 CF CARE CENTER Nemours Children's Clinic Jacksonville 807 Nira Street Jacksonville FL 32207 590634433 501c(3) 148325 CF CARE CENTER Nemours Children's Clinic Jacksonville 807 Nira Street Jacksonville FL 32207 590634433 501c(3) 27000 QUALITY IMPROVEMENT New York Medical College 40 Sunshine Cottage Road Valhalla NY 10595 131099420 501c(3) 27000 QUALITY IMPROVEMENT North Suburban Pulmonary Research and Education 8780 W Gold Niles IL 60714 364393617 501c(3) 8000 CF CARE CENTER Northwestern Medical Faculty Foundation Financial Services Suite 102 Chicago IL 60611 363097297 501c(3) 8000 CF CARE CENTER Northwestern University 750 N Lake Shore Drive 680 N Lake Shore Dr Suite 1118 Chicago IL 606113008 362167817 501c(3) 21659 ADULT CARE Northwestern University 750 N Lake Shore Drive Rubloff 7th Floor Chicago IL 606113008 362167817 501c(3) 21600 QUALITY IMPROVEMENT Oregon Health & Science University Sponsored Projects Administration O Rubloff 7th Floor Portland OR 97239 931176109 501c(3) 140950 CF CARE CENTER Pediatric Specialty Saint Barnabas Medical Center 0690 SW Bancroft Street Livingston NJ 07039 221494440 501c(3) 21905 CF CARE CENTER Pennsylvania State University College of Medicine Pediatric Pulmonary Division Hershey PA 17033 246000376 501c(3) 99440 CF CARE CENTER Phoenix Children's Hospital 1300 North 12th Street Office of Research Affairs H138 Phoenix AZ 85006 860422559 501c(3) 83815 CF CARE CENTER Providence Alaska Medical Center 3200 Providence Drive Anchorage AK 995196604 920016429 501c(3) 27995 CF CARE CENTER Providence Physician Service 101 W 8th Ave PO Box 196604 Spokane WA 99204 911216033 CORP 57380 CF CARE CENTER Regents of the University of Colorado Grants Contracts Aurora CO 800450508 846000555 501c(3) 166376 TRAINING Regents of the University of Colorado Grants Contracts F428 Fitzsimons Building 500 Aurora CO 800450508 846000555 501c(3) 75000 RESEARCH Regents of the University of Colorado Grants Contracts F428 Fitzsimons Building 500 Aurora CO 800450508 846000555 501c(3) 21600 QUALITY IMPROVEMENT Rhode Island Hospital 593 Eddy Street F428 Fitzsimons Building 500 Providence RI 02903 050258954 501c(3) 54935 CF CARE CENTER Rosalind Franklin University of Medicine and Scien 3333 Green Bay Road North Chicago IL 60064 362181973 501c(3) 179886 RESEARCH Rush University Medical Center 1725 West Harrison Suite 718 Chicago IL 60612 362174823 501c(3) 40130 CF CARE CENTER Saint Francis Medical Center 530 NE Glen Oak Avenue Peoria IL 61637 370662569 501c(3) 47355 CF CARE CENTER Saint Joseph's Hospital and Medical Center 703 Main Street Paterson NJ 07503 221487602 501c(3) 16145 CF CARE CENTER Samaritan Medical Center Child Adolescent Health Services Watertown NY 13601 150533577 501c(3) 9210 CF CARE CENTER Sanford Children's Specialty Clinic 1305 W 18th Street 513 Washington Street Sioux Falls SD 571175039 460447693 501c(3) 54745 CF CARE CENTER Seattle Children's Hospital 4800 Sand Point Way NE MS T-0111 Seattle WA 98105 910564748 501c(3) 43200 PILOT STUDIES Seattle Children's Hospital 4800 Sand Point Way NE MS T-0111 Seattle WA 98105 910564748 501c(3) 9288 QUALITY IMPROVEMENT Seattle Children's Hospital Foundation 6901 Sand Point Way NE Seattle WA 981050371 910564748 501c(3) 93510 CF CARE CENTER South Broward Hospital District Joe DiMaggios Childrens Hospital Hollywood FL 33321 596014973 501c(3) 47580 CF CARE CENTER Spectrum Health Downtown Campus Cystic Fibrosis Clinic Grand Rapids MI 49503 382752328 501c(3) 114775 CF CARE CENTER Spectrum Health Downtown Campus 100 Michigan Street NE MC 004 Grand Rapids MI 49503 382752328 501c(3) 21600 QUALITY IMPROVEMENT St Alexius Medical Center PO Box 1658 100 Michigan Street NE MC 004 Bismarck ND 58502 450226711 501c(3) 26925 CF CARE CENTER St Joseph's Regional Medical Center Inc 720 East Cedar Street South Bend IN 46617 351568821 501c(3) 19110 CF CARE CENTER St Louis University 3500 Lindell Blvd Suite 440 St Louis MO 63103 430654872 501c(3) 83130 CF CARE CENTER St Louis University 3500 Lindell Blvd St Louis MO 63103 430654872 501c(3) 27000 QUALITY IMPROVEMENT St Luke's Regional Medical Center 100 East Idaho Boise ID 83712 820161600 501c(3) 41015 CF CARE CENTER Stanford University 651 Serra Street Suite 220 Suite 200 Stanford CA 943056215 941156365 501c(3) 194400 RESEARCH Stanford University 651 Serra Street Suite 220 Mail Code 5402 Stanford CA 943056215 941156365 501c(3) 145415 CF CARE CENTER Stanford University 651 Serra Street Suite 220 Mail Code 5402 Stanford CA 943056215 941156365 501c(3) 42500 RESEARCH STUDIES Sutter Medical Center Sacramento 5609 J Street Suite C Mail Code 5402 Sacramento CA 95819 941156621 501c(3) 48140 CF CARE CENTER Tenet St Mary's Inc Cystic Fibrosis Center PO Box 24620 West Palm Beach FL 33407 752932830 CORP 37190 CF CARE CENTER The Children's Hospital at Scott & White 2401 South 31st Street 901 45th Street Temple TX 76508 741166904 501c(3) 15000 CF CARE CENTER The Children's Hospital of Philadelphia 3516 Civic Center Blvd Philadelphia PA 191044318 231352166 501c(3) 113022 CF CARE CENTER The Curators of the University of Missouri Office of Sponsored Program Adminis Columbia MO 65211 436003859 501c(3) 172200 RESEARCH The Curators of the University of Missouri Office of Sponsored Program Adminis 310 Jesse Hall Columbia MO 65211 436003859 501c(3) 63710 CF CARE CENTER The Curators of the University of Missouri Office of Sponsored Program Adminis 310 Jesse Hall Columbia MO 65211 436003859 501c(3) 45800 RESEARCH STUDIES The General Hospital Corporation (aka Massachus Mass General Research Finance 310 Jesse Hall Boston MA 02114 042697983 501c(3) 125000 RESEARCH The General Hospital Corporation (aka Massachus Mass General Research Finance PO Box 414876 Boston MA 02114 042697983 501c(3) 97213 TRAINING The General Hospital Corporation (aka Massachus Mass General Research Finance PO Box 414876 Boston MA 02114 042697983 501c(3) 96700 CF CARE CENTER The Hitchcock Foundation One Medical Center Drive PO Box 414876 Lebanon NH 03756 020222139 501c(3) 92320 CF CARE CENTER The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 217640 CF CARE CENTER The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 87867 RESEARCH CENTERS The Johns Hopkins University 600 N Wolfe Street Park 316 Baltimore MD 21205 520595110 501c(3) 9288 QUALITY IMPROVEMENT The Medical College of Wisconsin 8701 Watertown Plk Rd Milwaukee WI 53226 390806261 501c(3) 124545 CF CARE CENTER The Medical College of Wisconsin 8701 Watertown Plk Rd Milwaukee WI 53226 390806261 501c(3) 27000 QUALITY IMPROVEMENT The Ohio State University Research Foundation 1960 Kenny Road Columbus OH 432101063 316401599 501c(3) 97200 RESEARCH The Ohio State University Research Foundation 1960 Kenny Road Columbus OH 432101063 316401599 501c(3) 42201 RESEARCH STUDIES The Rector and Visitors of the University of Virgi PO Box 400195 Charlottesville VA 22904 546001796 501c(3) 193276 RESEARCH The Rector and Visitors of the University of Virgi PO Box 400195 Charlottesville VA 22904 546001796 501c(3) 104285 CF CARE CENTER The Rector and Visitors of the University of Virgi PO Box 400195 Charlottesville VA 22904 546001796 501c(3) 43600 RESEARCH STUDIES The Rector and Visitors of the University of Virgi PO Box 400195 Charlottesville VA 22904 546001796 501c(3) 27000 ADULT CARE The Rector and Visitors of the University of Virgi PO Box 400195 Charlottesville VA 22904 546001796 501c(3) 21196 QUALITY IMPROVEMENT The Regents of the University of California Davis Cashiers Office 1200 Dutton Hall Davis CA 95616 956036494 501c(3) 69255 CF CARE CENTER The Regents of the University of California Los A UCLA Office of Contract and Grant A One Shields Avenue Los Angeles CA 900241406 956006143 501c(3) 43200 PILOT STUDIES The Regents of the University of California San D Office of Post Award Financial Serv 10920 Wilshire Blvd Suite 200 La Jolla CA 920930954 956006144 501c(3) 107176 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 501c(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 501c(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 501c(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 501c(3) 79895 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) 52250 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) 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 501c(3) 206670 CF CARE CENTER The Regents of the University of Michigan 3003 South State Street Room 3089 Ann Arbor MI 481091274 386006309 501c(3) 43200 QUALITY IMPROVEMENT The Regents of the University of Minnesota Sponsored Projects Administration Minneapolis MN 554552070 416007513 501c(3) 321220 CF CARE CENTER The Research Institute at Nationwide Children's H Huntington National Bank 200 Oak St SE Columbus OH 43260 316056230 501c(3) 200120 CF CARE CENTER The Research Foundation of SUNY P O Box 9 Dept 4656 / Ref 413407 Albany NY 122010009 141368361 501c(3) 120926 CF CARE CENTER The Research Foundation of SUNY on behalf of Unive 211 UB Commons Amherst NY 14228 141368361 501c(3) 27000 ADULT CARE The Research Foundation of SUNY on behalf of Unive 211 UB Commons 520 Lee Entrance Amherst NY 14228 141368361 501c(3) 8000 CF CARE CENTER The Research Institute at Nationwide Children's Ho Huntington National Bank 520 Lee Entrance Columbus OH 43260 316056230 501c(3) 27000 ADULT CARE The Tampa General Hospital Foundation PO Box 1289 Dept 4656 / Ref 413407 Tampa FL 33601 277354477 501c(3) 53430 CF CARE CENTER The Trustees of Columbia University in the City of 351 Engineering Terrace New York NY 10027 135598093 501c(3) 123590 CF CARE CENTER The Trustees of Columbia University in the City of 351 Engineering Terrace New York NY 10027 135598093 501c(3) 48000 TRAINING The University of Alabama at Birmingham AB 990 Birmingham AL 352940109 636005396 501c(3) 500000 RESEARCH CENTERS The University of Alabama at Birmingham AB 990 1530 3rd Avenue S Birmingham AL 352940109 636005396 501c(3) 142639 CF CARE CENTER The University of Chicago 5801 S Ellis Avenue 1530 3rd Avenue S Chicago IL 60637 362177139 501c(3) 53825 CF CARE CENTER The University of North Carolina at Chapel Hill North Carolina State Treasurer Chapel Hill NC 275991350 566001393 501c(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 501c(3) 253276 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) 444400 RESEARCH The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501c(3) 86400 PILOT STUDIES The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501c(3) 73400 TRAINING The University of North Carolina at Chapel Hill North Carolina State Treasurer Office of Sponsored Research Chapel Hill NC 275991350 566001393 501c(3) 43738 RESEARCH STUDIES The University of Texas at Austin P O Box 7726 Office of Sponsored Research Austin TX 787137726 746000203 501c(3) 92867 RESEARCH The University of Texas at Austin P O Box 7726 Austin TX 787137726 746000203 501c(3) 7423 RESEARCH STUDIES The University of Vermont and State Agricultural C 85 So Prospect Street Burlington VT 054050160 030179440 501c(3) 27000 ADULT CARE Toledo Children's Hospital 2142 N Cove Blvd Toledo OH 43606 344428256 501c(3) 82770 CF CARE CENTER Trustees of Boston University 881 Commonwealth Avenue Boston MA 02215 042103547 501c(3) 43200 PILOT STUDIES Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501c(3) 346667 RESEARCH CENTERS Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501c(3) 233833 QUALITY IMPROVEMENT Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501c(3) 159528 PATIENT REGISTRY Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501c(3) 41872 PILOT STUDIES Trustees of Dartmouth College 11 Rope Ferry Road 6210 Hanover NH 037551404 020222111 501c(3) 27000 ADULT CARE Trustees of Indiana University Financial Management Services Bloomington IN 462666057 356001673 501c(3) 186435 CF CARE CENTER Trustees of Indiana University Financial Management Services PO Box 66057 Bloomington IN 462666057 356001673 501c(3) 18810 QUALITY IMPROVEMENT Trustees of the University of Pennsylvania 133 South 36th Street Mezzanine PO Box 66057 Philadelphia PA 191043246 231352685 501c(3) 97200 RESEARCH Trustees of the University of Pennsylvania 133 South 36th Street Mezzanine Philadelphia PA 191043246 231352685 501c(3) 75048 RESEARCH CENTERS Trustees of the University of Pennsylvania 133 South 36th Street Mezzanine 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) 21600 QUALITY IMPROVEMENT Trustees of the University of Pennsylvania on beha 3451 Walnut Street Philadelphia PA 19104 231352685 501c(3) 68670 CF CARE CENTER Tulane University Medical School 6401 Freret St Franklin Bldg P-221 New Orleans LA 70118 720423889 501c(3) 88315 CF CARE CENTER Tulane University Medical School 6401 Freret St New Orleans LA 70118 720423889 501c(3) 27000 ADULT CARE Tulane University Medical School 6401 Freret St New Orleans LA 70118 720423889 501c(3) 15917 QUALITY IMPROVEMENT UMDNJ- Robert Wood Johnson Medical School UMDNJ New Brunswick NJ 08903 221775306 501c(3) 66905 CF CARE CENTER University Hospitals of Cleveland 2074 Abingdon Road 1 Robert Wood Johnson Place Cleveland OH 44106 340714775 501c(3) 149820 CF CARE CENTER University Hospitals of Cleveland 2074 Abingdon Road Cleveland OH 44106 340714775 501c(3) 26966 QUALITY IMPROVEMENT University of Arkansas for Medical Sciences 4301 West Markham Street Little Rock AR 72205 716046242 501c(3) 45000 CF CARE CENTER University of Cincinnati 560 University Hall Mail Slot 555 Cincinnati OH 45221 316000989 501c(3) 59000 TRAINING University of Cincinnati Physicians Company 231 Albert Sabin Way Sponsored Programs Accounting Dept Cincinnati OH 452670564 311405915 501c(3) 51440 CF CARE CENTER University of Florida PO Box 115500 MSB 60048 Gainsville FL 32611 596002052 501c(3) 88440 CF CARE CENTER University of Florida PO Box 115500 Gainesville FL 32611 596002052 501c(3) 27000 ADULT CARE University of Iowa Office of Vice President for Resear Iowa City IA 52242 426004813 501c(3) 500000 RESEARCH CENTERS University of Iowa Office of Vice President for Resear Division of Sponsored Programs Iowa City IA 52242 426004813 501c(3) 67677 TRAINING University of Iowa Office of Vice President for Resear Division of Sponsored Programs Iowa City IA 52242 426004813 501c(3) 45500 RESEARCH University of Kansas Medical Center Research Insti 3901 Rainbow Boulevard Division of Sponsored Programs Kansas City KS 661607702 481108830 501c(3) 52030 CF CARE CENTER University of Kentucky Research Foundation Kentucky CF Clinic J424 Lexington KY 405360284 616033693 501c(3) 105550 CF CARE CENTER University of Louisville Research Foundation Inc Office of Grants Management 740 South Limestone Louisville KY 40292 611029626 501c(3) 88180 CF CARE CENTER University of Louisville Research Foundation Inc Office of Grants Management Jouett Hall Belknap Campus Louisville KY 40292 611029626 501c(3) 21600 QUALITY IMPROVEMENT University of Massachusetts Medical Center 55 Lake Avenue Jouett Hall Belknap Campus Worcester MA 10655 043167352 501c(3) 64296 CF CARE CENTER University of Miami Pediatric/Pulmonary Division Miami FL 33137 590624458 501c(3) 57655 CF CARE CENTER University of Miami Pediatric/Pulmonary Division 1601 NW 12th Avenue Miami FL 33137 590624458 501c(3) 26855 QUALITY IMPROVEMENT University of Mississippi Medical Center 2500 North State Street 1601 NW 12th Avenue Jackson MS 392164505 646008520 501c(3) 64759 CF CARE CENTER University of Mississippi Medical Center 2500 North State Street Jackson MS 392164505 646008520 501c(3) 27000 ADULT CARE University of Nebraska Medical Center Service Building Omaha NE 681987835 470049123 501c(3) 133610 CF CARE CENTER University of Nebraska Medical Center Service Building 985100 Nebraska Medical Center Omaha NE 681987835 470049123 501c(3) 27000 QUALITY IMPROVEMENT University of New Mexico Health Sciences Center Controllers Office 985100 Nebraska Medical Center Albuquerque NM 871315041 856000642 501c(3) 67000 CF CARE CENTER University of New Mexico Health Sciences Center Controllers Office Health Sciences and Services Bldg Albuquerque NM 871315041 856000642 501c(3) 21600 QUALITY IMPROVEMENT University of Oklahoma Health Sciences Center PO Box 26901 Health Sciences and Services Bldg Oklahoma City OK 73190 736017987 501c(3) 113615 CF CARE CENTER University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 460000 RESEARCH CENTERS University of Pittsburgh 350 Thackeray Hall Pittsburgh PA 15260 250965591 501c(3) 176600 RESEARCH STUDIES University of Rochester 1325 Mt Hope Avenue Rochester NY 14642 160743209 501c(3) 80790 CF CARE CENTER University of Rochester 1325 Mt Hope Avenue Suite 260 Rochester NY 14642 160743209 501c(3) 21600 QUALITY IMPROVEMENT University of South Alabama Admin Bldg 362 Suite 260 Mobile AL 36688 630477348 501c(3) 19280 CF CARE CENTER University of South Carolina Research Foundation 901 Sumter Street Columbia SC 29208 570967350 501c(3) 35080 CF CARE CENTER University of South Florida Department of Pediatrics Suite 501 Tampa FL 33606 593102112 501c(3) 27025 CF CARE CENTER University of Southern California USC Contracts and Grants 17 Davis Boulevard Suite 200 Los Angeles CA 900339002 951642394 501c(3) 83455 CF CARE CENTER University of Southern California USC Contracts and Grants 1540 Alcazar Street Los Angeles CA 900339002 951642394 501c(3) 27000 ADULT CARE University of Tennessee 62 S Dunlap 1540 Alcazar Street Memphis TN 38163 626001636 501c(3) 65070 CF CARE CENTER University of Tennessee Medical Center 1940 Alcoa Hwy Knoxville TN 37920 311626179 501c(3) 18500 CF CARE CENTER University of Texas Health Center at Tyler 11937 US Hwy 271 Suite E-110 Tyler TX 75708 756001354 501c(3) 30000 CF CARE CENTER University of Texas Health Center at Tyler 11937 US Hwy 271 Tyler TX 75708 756001354 501c(3) 21600 QUALITY IMPROVEMENT University of Utah 406 Park Bldg Salt Lake City UT 84112 876000525 501c(3) 190685 CF CARE CENTER University of Utah 406 Park Bldg Salt Lake City UT 84112 876000525 501c(3) 35965 PILOT STUDIES University of Washington Grant Contract Accounting Seattle WA 981056692 916001537 501c(3) 500000 RESEARCH CENTERS University of Washington Grant Contract Accounting 3917 University Way NE Seattle WA 981056692 916001537 501c(3) 194400 RESEARCH University of Washington Grant Contract Accounting 3917 University Way NE Seattle WA 981056692 916001537 501c(3) 76340 CF CARE CENTER University of Washington Grant Contract Accounting 3917 University Way NE Seattle WA 981056692 916001537 501c(3) 43200 PILOT STUDIES University of Washington Grant Contract Accounting 3917 University Way NE Seattle WA 981056692 916001537 501c(3) 41060 RESEARCH STUDIES University of Wisconsin Board of Regents 750 University Avenue 3917 University Way NE Madison WI 53706 396006492 501c(3) 142328 CF CARE CENTER University of Wisconsin Board of Regents 750 University Avenue Madison WI 53706 396006492 501c(3) 50171 QUALITY IMPROVEMENT University of Wisconsin Board of Regents 750 University Avenue Madison WI 53706 396006492 501c(3) 49750 TRAINING UT Southwestern Medical Center at Dallas 5323 Harry Hines Blvd Dallas TX 753909040 756002868 501c(3) 165813 CF CARE CENTER UT Southwestern Medical Center at Dallas 5323 Harry Hines Blvd Dallas TX 753909040 756002868 501c(3) 43200 PILOT STUDIES Vanderbilt University Medical Center PO Box 30195 Nashville TN 372410195 620476822 501c(3) 162235 CF CARE CENTER Vanderbilt University Medical Center PO Box 30195 Nashville TN 372410195 620476822 501c(3) 9288 QUALITY IMPROVEMENT Via Christi Regional Medical Center CF Clinic 3311 East Murdock Street Wichita KS 67218 481172106 501c(3) 56895 CF CARE CENTER Virginia Commonwealth University Box 2506 - VCU Station Richmond VA 232842506 546001758 501c(3) 61685 CF CARE CENTER Wake Forest University Health Sciences Medical Center Blvd WinstonSalem NC 271571064 223849199 501c(3) 55150 CF CARE CENTER Washington University Campus Box 1034 St Louis MO 631121408 430653611 501c(3) 209385 CF CARE CENTER Washington University Campus Box 1034 700 Rosedale Avenue St Louis MO 631121408 430653611 501c(3) 21600 QUALITY IMPROVEMENT Wayne State University Grants Contracts Office III 700 Rosedale Avenue Detroit MI 48201 386028425 501c(3) 48040 CF CARE CENTER Weill Medical College of Cornell University Whitney Pavilion Rm W-706 Research and Sponsored Programs New York NY 10021 150532082 501c(3) 45800 RESEARCH STUDIES West Virginia University Research Corporation West Virginia University 1300 York Avenue Box 62 Morgantown WV 265066001 550665758 501c(3) 63551 CF CARE CENTER West Virginia University Research Corporation West Virginia University PO Box 6001 Morgantown WV 265066001 550665758 501c(3) 27000 ADULT CARE Yale University Cashier Office of the Asst Treasu PO Box 6001 New Haven CT 065208231 060646973 501c(3) 64350 CF CARE CENTER CYSTIC FIBROSIS FOUNDATION THERAPUETICS 6931 ARLINGTON ROAD SUITE 200 BETHESDA MD 20814 912059167 501C(3) 49932523 GENERAL SUPPORT 171 8 PATIENT ASSISTANCE PROGRAM 646 1205234 FELLOWSHIPS 4 7008 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 false false Robert J Beall PhD 333873 168556 117753 57997 25439 7935 238007 104851 19314 0 734386 339339 0 0 C Richard Mattingly 358018 0 95553 0 21749 0 267345 0 17114 0 759779 0 0 0 Preston W Campbell MD 229481 118606 65596 32309 15701 5445 170443 71573 26877 0 508098 227933 0 0 Vera H Twigg 244233 0 62993 0 18002 0 93694 0 26261 0 445183 0 0 0 Ann Palmer 201870 0 29864 0 1876 0 24116 0 18303 0 276029 0 0 0 Daniel Klein 221229 0 24863 0 2080 0 25128 0 4000 0 277300 0 0 0 Gregory August 184906 0 32893 0 399 0 22623 0 21877 0 262698 0 0 0 David McLoughlin 232199 0 34112 0 806 0 25128 0 23877 0 316122 0 0 0 Glen Goldmark 183193 0 28794 0 1650 0 21964 0 17614 0 253215 0 0 0 Amy DeMaria 180744 0 31869 0 377 0 21390 0 7292 0 241672 0 0 0 Mary Dwight 161126 0 34037 0 325 0 20867 0 29877 0 246232 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 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. COMPENSATION PART II CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $319,133, 401(K) BONUS - $14,740; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $117,753; (B)(III) OTHER REPORTABLE COMPENSATION: HEALTH INSURANCE BENEFIT - $2,912, AUTOMOBILE ALLOWANCE - $4,824, OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $17,703; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $25,128, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $147,219, SERP (3) - $65,660; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $10,968, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $4,000, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,346 CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $161,296, 401(K) BONUS - $7,260; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $57,997; (B)(III) OTHER REPORTABLE COMPENSATION: HEALTH INSURANCE BENEFIT - $1,434, AUTOMOBILE ALLOWANCE - $2,376, OTHER BENEFITS INCLUDING GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $4,125; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $72,511, SERP (3) - $32,340; (D) NONTAXABLE BENEFITS: $0 CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $229,481; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $65,596; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $4,646, SECTION 457(B) PLAN (5) - $11,055; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $25,128, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $108,374, SERP (4) - $36,941; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $15,552, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $5,000, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $6,325 CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $118,606; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $32,309; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN (5) - $5,445; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $53,378, SERP (4) - $18,195; (D) NONTAXABLE BENEFITS: $0 CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. NAME: (A) R. MATTINGLY; (B)(I) BASE COMPENSATION: BASE SALARY - $358,018; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $95,553; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN (5) - $16,500; OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $5,249; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $25,128, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $163,713, SERP (4) - $78,504; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $10,968, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $1,800, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,346 CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. (A) NAME: V. TWIGG; (B)(I) BASE COMPENSATION: BASE SALARY - $244,233; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $62,993; (B)(III) OTHER REPORTABLE COMPENSATION: TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $1,611, SECTION 457(B) PLAN (5) - $16,391; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $25,128, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $68,566; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $16,571, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $5,000, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,690 (1) THIS IS AN AWARD 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 2011 PLAN YEAR. (3)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 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 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. (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 AGE 60. 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. 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 $16,500). 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, 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 2011 (I.E., WITH RESPECT TO THE 2010-2012 AND THE 2011-2013 PERFORMANCE PERIODS), BUT THE AMOUNTS REPORTED HAVE NOT BEEN EARNED, AWARDED OR PAID UNDER THE PLAN. THE INDIVIDUAL MUST BE EMPLOYED ON 12/31/12 AND 12/31/13 TO BE ELIGIBLE TO RECEIVE FULL PAYMENT OF THE AWARD FOR THE 2010-2012 AND THE 2011-2013 PERFORMANCE PERIODS, RESPECTIVELY. X 1 532764 FMV 0 false true false OTHER PROGRAM SERVICES PART III, LINE 4D COMMUNITY SERVICES - THE CYSTIC FIBROSIS FOUNDATION PROVIDES YEAR-ROUND EFFORTS TO EDUCATE, INFORM AND EMPOWER PATIENTS 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 THOSE WITH CYSTIC FIBROSIS. APPROXIMATELY 27,000 PATIENTS WERE SERVED IN 2011, INCLUDING APPROXIMATELY 866 PATIENTS 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 TO ENSURE COMPLETENESS AND ACCURACY. THE AUDIT COMMITTEE OF THE BOARD OF TRUSTEES ALSO REVIEWS THE FORM 990 AS PART OF ITS CHARTERED RESPONSIBILITIES. 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 2011 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 PACKAGES 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 2009 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 IN ADDITION, IN DECEMBER 2010, THE COMPENSATION COMMITTEE REVIEWED THE EXECUTIVES' PERFORMANCE, RECENT INDEPENDENTLY PREPARED COMPENSATION DATA, AND OTHER CHANGES RELEVANT TO THE ENVIRONMENT OF THE CF FOUNDATION TO APPROVE INCREASES IN THE EXECUTIVES' SALARY FOR CALENDAR YEAR 2011. THE COMPENSATION COMMITTEE DOCUMENTED THE BASIS FOR ITS DETERMINATION IN THE MINUTES OF ITS MEETING. THESE MINUTES WERE REVIEWED AND APPROVED AT THE FOLLOWING MEETING OF THE COMPENSATION COMMITTEE. 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 LINK TO GUIDESTAR.ORG FOR ACCESS TO FORM 990 DURING 2011. 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 2011. THE BOARD AND OFFICER CONFLICT OF INTEREST POLICY AND THE AUDITED FINANCIAL STATEMENTS WERE AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG DURING 2011. OTHER CHANGE IN NET ASSETS FORM 990, PART XI, LINE 5 UNREALIZED GAIN ON INVESTMENTS -11,046,677 OTHER CHANGES IN NET ASSETS - CHANGE IN EQUITY IN SUBSIDIARY -12,656,688 ------------ TOTAL -23,703,365 COMPENSATION OF OFFICERS, DIRECTORS, TRUSTEES, KEY EMPLOYEES, ETC FORM 990, PART VII, SECTION A NAME AND TITLE J. TAYLOR CRANDALL, TRUSTEE AVG HRS WORKED 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 MICHAEL L. BEATTY, TRUSTEE AVG HRS WORKED 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 RICHARD L. DANDURAND, VICE CHAIR AVG HRS WORKED 5 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 RICHARD J. GRAY, TRUSTEE AVG HRS WORKED 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 BARRY M. GUMP, TRUSTEE AVG HRS WORKED 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 SUSAN L. HOOK, VICE CHAIR AVG HRS WORKED 5 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 CATHERINE C. MCLOUD, CHAIR AVG HRS WORKED 7 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 CHAD T. MOORE, TRUSTEE AVG HRS WORKED 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 DAVID A. MOUNT, TRUSTEE AVG HRS WORKED 5 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 GARY B. SABIN, EXEC VICE CHAIRMAN AVG HRS WORKED 5 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 Christy Shaffer,PH.D. TRUSTEE AVG HRS WORKED 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 STEVEN SHAK, M.D., TRUSTEE AVG HRS WORKED 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 CHARLES J. THAYER, TREASURER AVG HRS WORKED 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 THEODORE J. TORPHY,PH.D. TRUSTEE AVG HRS WORKED 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 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 PAUL W. WHETSELL, TRUSTEE AVG HRS WORKED 5 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 KC BRYAN WHITE, TRUSTEE AVG HRS WORKED 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 ROBERT KAPLAN, TRUSTEE AVG HRS WORKED 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 ROBERT J. BEALL, PH.D., PRES/CEO AVG HRS WORKED 34 HRS POSITION DIRECTOR & OFFICER REPORTABLE COMP FROM THE ORG 477,065 REPORTABLE COMP FROM RELATED ORG 234,488 EST. AMT OF OTHER COMP FROM THE ORG 362,172 NAME AND TITLE C. RICHARD MATTINGLY, EXEC VP/COO AVG HRS WORKED 50 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 475,320 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 284,459 NAME AND TITLE PRESTON W. CAMPBELL, M.D., EXEC VP OF MEDICAL AFFAIRS AVG HRS WORKED 34 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 310,778 REPORTABLE COMP FROM RELATED ORG 156,360 EST. AMT OF OTHER COMP FROM THE ORG 268,893 NAME AND TITLE VERA H. TWIGG, SR VP & CFO AVG HRS WORKED 50 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 325,228 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 119,955 NAME AND TITLE ANN PALMER, SR VP OF FIELD MGMT AVG HRS WORKED 50 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 233,610 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 42,419 NAME AND TITLE DANIEL KLEIN, SR VP - CFFP AVG HRS WORKED 50 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 248,172 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 29,128 NAME AND TITLE GREGORY AUGUST, CIO AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 218,198 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 44,500 NAME AND TITLE DAVID MCLOUGHLIN, SR VP OF OPS AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 267,117 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 49,005 NAME AND TITLE GLEN GOLDMARK, VP OF HR AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 213,637 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 39,578 NAME AND TITLE AMY DEMARIA, SR VP OF COMM AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 212,990 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 28,683 NAME AND TITLE MARY B. DWIGHT, VP GOVT AFFAIRS AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 195,488 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 50,744 TOTAL REPORTABLE COMP FROM THE ORG 3,177,603 TOTAL REPORTABLE COMP FROM RELATED ORG 390,848 TOTAL EST. AMT OF OTHER COMP FROM THE ORG 1,319,535 HOURS DEVOTED FOR RELATED ORGANIZATION FORM 990 PART VII NAME:Robert J. Beall, Ph.D. TITLE:President & CEO HOURS:23 HOURS DEVOTED FOR RELATED ORGANIZATION FORM 990 PART VII NAME:C. Richard Mattingly TITLE:Exec VP and COO HOURS:10 HOURS DEVOTED FOR RELATED ORGANIZATION FORM 990 PART VII NAME:Preston W. Campbell, MD TITLE:Exec VP of Medical Affairs HOURS:23 HOURS DEVOTED FOR RELATED ORGANIZATION FORM 990 PART VII NAME:Vera H. Twigg TITLE:Sr. VP and CFO HOURS:10 CYSTIC FIBROSIS FOUNDATION PHARMACY LLC 6931 ARLINGTON RD BETHESDA MD 20814 510636432 PROGRAM MGT DE 24659724 1958607 NA cystic fibrosis patient assistance fdn 6931 arlington rd bethesda MD 20814 900350985 patient asst DE 3525197 3580629 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 14385471 32220396 1.00000 true true true true false false false false false false true false true true false false false true CYSTIC FIBROSIS SERVICES INC A(I) 38709 FMV CYSTIC FIBROSIS FOUNDATION THERAPEUTICS B 49932523 FMV CYSTIC FIBROSIS FOUNDATION GROUP C 81863236 FMV CYSTIC FIBROSIS SERVICES INC D 10000000 FMV CYSTIC FIBROSIS SERVICES INC B 8729961 FMV CYSTIC FIBROSIS SERVICES INC K 8920638 FMV CYSTIC FIBROSIS FOUNDATION THERAPEUTICS M 255145 FMV CYSTIC FIBROSIS FOUNDATION THERAPEUTICS N 1640186 FMV CYSTIC FIBROSIS SERVICES INC R 13762061 FMV