2025-03-21T16:04:43-05:00 2024-06-30 362938874 OSTROW REISIN BERK & ABRAMS LTD 455 N CITYFRONT PLAZA DR SUITE 1600 CHICAGO IL 60611 990 2023-07-01 841558631 PULMONARY FIBROSIS FOUNDATION PULM 3122652182 230 EAST OHIO STREET 500 CHICAGO IL 60611 SCOTT STASZAK PRESIDENT & CEO 3122652182 2025-03-17 1 1 JAMES G QUAID P00641738 3126707444 2025-03-17 2023 2025-03-06 01:10:19Z SCOTT STASZAK 230 EAST OHIO STREET 500 CHICAGO IL 60611 9341652 0 X WWW.PULMONARYFIBROSIS.ORG X 2000 CO TO ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS AND ULTIMATELY A CURE FOR PULMONARY FIBROSIS. UNTIL THIS GOAL IS ACHIEVED, THE PFF IS COMMITTED TO ADVANCING IMPROVED CARE OF PATIENTS WITH PF AND PROVIDING UNEQUALED SUPPORT AND EDUCATION RESOURCES FOR PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND HEALTH CARE PROVIDERS. 14 14 43 4213 2000 0 8462441 6167449 3896008 2617915 419803 489278 -961715 -998425 11816537 8276217 562831 784888 0 0 4198627 4241412 0 0 1089462 5580357 3982701 10341815 9009001 1474722 -732784 16794445 15320155 5059196 3865441 11735249 11454714 X TO ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS AND ULTIMATELY A CURE FOR PULMONARY FIBROSIS. UNTIL THIS GOAL IS ACHIEVED, THE PFF IS COMMITTED TO ADVANCING IMPROVED CARE OF PATIENTS WITH PF AND PROVIDING UNEQUALED SUPPORT AND EDUCATION RESOURCES FOR PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND HEALTH CARE PROVIDERS. 0 0 1527128 1893657 PFF REGISTRY: THE PFF REGISTRY PROGRAM RECORDED A TOTAL REVENUE OF $1,972,389, ENCOMPASSING CONTRIBUTIONS AND SPONSORSHIPS AMOUNTING TO $78,732 AND PROGRAM SERVICE REVENUE TOTALING $1,893,657. THIS INITIATIVE SERVES AS A COLLABORATIVE RESEARCH ENDEAVOR, UNITING VARIOUS STAKEHOLDERS SUCH AS PATIENTS, CAREGIVERS, FAMILY MEMBERS, HEALTHCARE PROVIDERS, AND RESEARCHERS WITH THE GOAL OF ADVANCING RESEARCH AND ENHANCING THE QUALITY OF LIFE FOR INDIVIDUALS AFFECTED BY PULMONARY FIBROSIS (PF) AND INTERSTITIAL LUNG DISEASE (ILD).THE GOALS OF THE REGISTRY INCLUDE: ESTABLISH A COMPREHENSIVE INFORMATION SOURCE TO ASSIST RESEARCHERS IN ADDRESSING DIAGNOSTIC, TREATMENT, AND POTENTIAL CURE-RELATED QUERIES. PROVIDE A DATASET ENABLING RESEARCHERS TO ENHANCE THE QUALITY OF CARE IN US-BASED MEDICAL PRACTICES. UTILIZE INFORMATION TO SUPPORT LEGISLATIVE AND ADVOCACY INITIATIVES. ENGAGE THE PF AND ILD COMMUNITIES.THE REGISTRY INCLUDES TWO DISTINCT REGISTRIES: THE PFF PATIENT REGISTRY GATHERED PHYSICIAN-REPORTED MEDICAL INFORMATION TWICE A YEAR FROM OVER 2000 PATIENTS RECEIVING CARE AT 42 PARTICIPATING PFF CARE CENTERS ACROSS THE UNITED STATES FROM 2016 TO 2022. THE PFF COMMUNITY REGISTRY LAUNCHED IN JULY 2022 AND RELIES ON SELF-REPORTED INFORMATION SUBMITTED BY PATIENTS, LUNG TRANSPLANT RECIPIENTS DIAGNOSED WITH PF OR ILD, AS WELL AS THEIR CAREGIVERS AND BIOLOGICAL FAMILY MEMBERS, OVER 2,100 INDIVIDUALS HAVE ENROLLED TO DATE.TOGETHER, THESE REGISTRIES COMPILE DATA IN AN ELECTRONIC DATABASE COVERING PATIENT DIAGNOSIS, MEDICAL HISTORY, TREATMENT, QUALITY OF LIFE, AS WELL AS MEDICAL AND FAMILY HISTORY FROM CAREGIVERS AND FAMILY MEMBERS. THE COLLECTED DATA ARE ANONYMIZED AND INDEPENDENTLY MANAGED BY A DATA COORDINATING CENTER. FURTHERMORE, THE PATIENT REGISTRY OBTAINED BLOOD SAMPLES WITH PATIENT CONSENT, WHICH WERE THEN ANONYMIZED AND INDEPENDENTLY MANAGED BY A MEDICAL SPECIMEN STORAGE FACILITY ASSOCIATED WITH THE DATA COORDINATING CENTER.CURRENTLY, 54 RESEARCH PROJECTS HAVE BEEN COMPLETED OR ARE UNDERWAY USING CLINICAL DATA AND SOME UTILIZED BIOSAMPLES AND/OR HRCT SCANS FROM THE PATIENT REGISTRY. MOST OF THESE STUDIES ARE CLINICAL IN NATURE, BUT BASIC/TRANSLATIONAL PROJECTS AND PATIENT-CENTERED RESEARCH ALSO ARE WELL REPRESENTED. 1213497 424708 PFF SUMMIT: PFF SUMMIT 2023 IS THE PFF'S BIENNIAL INTERNATIONAL HEALTH CARE CONFERENCE ON PULMONARY FIBROSIS (PF). TOTAL REVENUE RECOGNIZED FOR THE PFF SUMMIT WAS $1,243,366, WHICH INCLUDED SPONSORSHIPS AND CONTRIBUTIONS OF $1,157,842 AND PROGRAM SERVICE FEES OF $85,524. THE GOAL OF THE PFF SUMMIT IS TO FOSTER A COLLABORATIVE ENVIRONMENT TO IMPROVE EDUCATION AND AWARENESS OF PF AND TO IDENTIFY NEW APPROACHES TO TREAT, AND ULTIMATELY CURE, THIS DEVASTATING DISEASE. THE PFF SUMMIT FEATURED AN INNOVATIVE CONTINUING MEDICAL EDUCATION (CME) AND MAINTENANCE OF CERTIFICATION (MOC) PROGRAM FOR HEALTH CARE PROFESSIONALS, RESEARCHERS, ALLIED HEALTH PROFESSIONALS, AND INDUSTRY REPRESENTATIVES AND OFFERED EDUCATIONAL SESSIONS FOR PF PATIENTS AND CAREGIVERS THAT ADDRESS THEIR GROWING EDUCATIONAL NEEDS. DURING SUMMIT 2023, THE PFF FEATURED A FULL DAY SESSION FOR COMMUNITY PULMONOLOGISTS AND ILD FELLOWS, A HALF-DAY SESSION FOR NURSES AND ALLIED HEALTH PROFESSIONALS, 20 DIFFERENT SESSIONS FOR PATIENTS, CAREGIVERS, TRANSPLANT RECIPIENTS, AND THOSE WHO HAVE LOST A LOVED ONE, 10 SESSIONS FOR PROFESSIONALS, AND TWO PLENARY SESSIONS (ALL AUDIENCE) WITH 128 MEMBERS OF FACULTY ON THE ROSTER. (NOTE: SOME EXPENSES FOR THE PFF SUMMIT 2023 WERE INCLUDED IN THE 2022 FORM 990). 902681 760000 RESEARCH:TOTAL REVENUE RECOGNIZED FOR RESEARCH WAS $720,426, WHICH IS COMPRISED OF CONTRIBUTIONS AND SPONSORSHIPS. THE PULMONARY FIBROSIS FOUNDATION (PFF) PLACES ENORMOUS IMPORTANCE ON CREATING AN ENVIRONMENT THAT WILL ASSIST IN THE DEVELOPMENT OF EFFECTIVE TREATMENTS FOR PULMONARY FIBROSIS (PF). IN ADDITION TO CREATING THE PFF PATIENT REGISTRY TO PROVIDE RESEARCHERS WITH DATA TO ADDRESS SPECIFIC RESEARCH QUESTIONS, WE ARE DIRECTLY FUNDING PF RESEARCH THROUGH THE PFF SCHOLARS PROGRAM, DEVELOPING LEGISLATIVE ADVOCACY EFFORTS, ENCOURAGING COLLABORATIVE RELATIONS BETWEEN INDUSTRY AND ACADEMIC RESEARCHERS, DELIVERING KEY COMMUNICATIONS TO PATIENTS, AND DEVELOPING SOLUTIONS TO BRIDGE EXISTING GAPS IN PF RESEARCH.THE PFF SCHOLARS PROGRAM SUPPORTS PROJECTS THAT OFFER A HIGH LIKELIHOOD OF IMPROVING THE UNDERSTANDING OF PF IN THE FOLLOWING RESEARCH AREAS: BASIC SCIENCE, TRANSLATIONAL, CLINICAL, EPIDEMIOLOGICAL, AND HEALTH SERVICES. THE GOAL OF THE PFF SCHOLARS PROGRAM IS TO SUPPORT EMERGING INVESTIGATORS TO ADVANCE RESEARCH THAT COULD TRANSLATE INTO SUCCESSFUL THERAPIES, WHILE ALSO ENABLING THESE PROMISING RESEARCHERS TO OBTAIN INDEPENDENT FUNDING AND CONTINUE THEIR CUTTING-EDGE RESEARCH. THE RESEARCH REVIEW COMMITTEE ADMINISTERS THE PEER-REVIEW PROCESS, WHICH IS COMPRISED OF 25 CREDIBLE EXPERTS FROM THE US AND CANADA. AFTER THEIR REVIEW AND RECOMMENDATIONS, THE PFF FUNDED SIX GRANTS OF $100,000 EACH OVER A TWO-YEAR PERIOD IN THE 2024 CYCLE. THE PFF ALSO CONSIDERS OTHER SMALLER GRANTS THAT FIT THE PARAMETERS OF THE RESEARCH GUIDELINES. 3282173 24888 299550 EDUCATION:THE PULMONARY FIBROSIS FOUNDATION (PFF) IS COMMITTED TO PROVIDING QUALITY DISEASE EDUCATION TO THE PULMONARY FIBROSIS COMMUNITY. THE PFF PROVIDES PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND HEALTH-CARE PROVIDERS WITH RESOURCES TO MORE FULLY UNDERSTAND PF AND PROVIDES PATIENTS WITH THE TOOLS NECESSARY TO LIVE WITH THE DISEASE AND IMPROVE THEIR QUALITY OF LIFE.THE PFF DISEASE EDUCATION WEBINAR SERIES PROVIDES A FREE WAY FOR PATIENTS, CAREGIVERS, AND FAMILIES TO LEARN FROM PF SPECIALISTS ON A VARIETY OF TOPICS. DURING FY23-24, THE PFF DISEASE EDUCATION WEBINAR SERIES INCLUDED SEVEN WEBINARS. THE PFF DISEASE EDUCATION WEBINAR SERIES TOPICS INCLUDED: FAMILIAL PULMONARY FIBROSIS, SLEEP DISORDERS AND PF, EMERGENCY PREPAREDNESS, PULMONARY REHABILITATION, AND MORE. THE PFF DISEASE EDUCATION WEBINAR SERIES HOSTED OVER 1,300 LIVE ATTENDEES. WEBINARS ARE RECORDED AND AVAILABLE FOR VIEWING ON BOTH THE PULMONARY FIBROSIS FOUNDATION WEBSITE AND YOUTUBE CHANNEL. WEBINARS FROM THE PFF DISEASE EDUCATION WEBINAR SERIES FROM THIS TIMEFRAME HAVE AMASSED OVER 11,000 VIEWS ON YOUTUBE. IN ADDITION TO THE PFF DISEASE EDUCATION WEBINAR SERIES, THE FOUNDATION HAS DEVELOPED A LIBRARY OF DISEASE EDUCATION MATERIALS. DURING FY23-24, THE PULMONARY FIBROSIS FOUNDATION DEVELOPED THE FOLLOWING MATERIALS: "UNDERSTANDING PULMONARY FUNCTION TESTS: A GUIDE FOR PEOPLE LIVING WITH PULMONARY FIBROSIS," "COMMON HEALTH RESEARCH TERMS: A GUIDE FOR PEOPLE LIVING WITH PULMONARY FIBROSIS," "LUNG BIOPSY FOR INTERSTITIAL LUNG DISEASE" FACT SHEET, AND "PROGRESSIVE PULMONARY FIBROSIS AND PROGRESSIVE FIBROTIC INTERSTITIAL LUNG DISEASE" FACT SHEET. MARKETING: THE MARKETING PROGRAM RECORDED TOTAL IN-KIND REVENUE OF $412,122, WHICH INCLUDED REGULAR IN-STORE ADVERTISEMENTS AT A MAJOR RETAILER ACROSS ALL STORES IN THE UNITED STATES DURING THE MONTH OF SEPTEMBER, AS WELL AS ON-LINE ADVERTISING FROM TWO OTHER COMPANIES. THIS ADVERTISING WAS TO SPREAD AWARENESS OF PULMONARY FIBROSIS AND THE FOUNDATION.IN EARLY 2023, THE FOUNDATION LAUNCHED THE MARKETING AND COMMUNICATIONS FOR THE PFF SUMMIT. OUR EFFORTS FEATURED EMAIL AND SOCIAL MEDIA CAMPAIGNS, PRINTED POSTCARDS, MEDIA OUTREACH, AND COMMUNICATION WITH ALL PFF CONSTITUENCIES. THE MARKETING AND AWARENESS EFFORTS RESULTED IN MORE THAN 800 HEALTHCARE EXPERTS, PHYSICIANS, RESEARCHERS, PATIENTS, CAREGIVERS, AND INDUSTRY LEADERS FROM 43 STATES AND 16 COUNTRIES IN ATTENDANCE AT THE CONFERENCE. IN MAY, THE PFF REGISTRY REACHED A MILESTONE OF 2,000 ENROLLEES. SURPASSING THE 2,000-PARTICIPANT MILESTONE DURING REGISTRY RECRUITMENT WEEK IN APRIL, THE PFF USED SOCIAL MEDIA AND EMAIL CAMPAIGNS TO REACH OUR AUDIENCES, AS WELL AS A BRAND-NEW LANDING PAGE ON THE FOUNDATION WEBSITE, REPLACING THE MICROSITE. THE NEW LANDING PAGE IS EASIER TO NAVIGATE, FEATURES MORE PATIENT-FRIENDLY MESSAGING, AND ADHERES TO PFF BRANDING. IN SEPTEMBER, NINE LEADING PATIENT ORGANIZATIONS UNITED TO PRESENT THE FOURTH ANNUAL ILD DAY ON SEPTEMBER 13, TO RAISE AWARENESS AND UNDERSTANDING OF INTERSTITIAL LUNG DISEASE. AN EDUCATIONAL WEBINAR, "BREATHING BETTER WITH SUPPLEMENTAL OXYGEN WAS PRESENTED TO MORE THAN 300 ATTENDEES AND HAS RECEIVED OVER 2,300 VIEWS TO DATE.PFF CARE CENTER NETWORK (CCN):THE PULMONARY FIBROSIS FOUNDATION (PFF) IS DEDICATED TO PROMOTING EARLIER RECOGNITION AND DIAGNOSIS OF PULMONARY FIBROSIS AND ENSURING THAT PATIENTS RECEIVE THE HIGHEST QUALITY HEALTHCARE. AS PART OF THAT COMMITMENT, SINCE 2013 THE PFF HAS WORKED WITH THE PF MEDICAL COMMUNITY TO ESTABLISH AND EXPAND THE PFF CARE CENTER NETWORK (CCN) TO 81 CARE CENTERS AND SEVEN CLINICAL ASSOCIATES WHERE PEOPLE WITH PF CAN FIND EXPERIENCED MEDICAL PROFESSIONALS WHO UNDERSTAND THEIR DISEASE AND SUPPORT SERVICES TO IMPROVE THE QUALITY OF THEIR LIVES. THE GOALS OF THE PFF CCN ARE TO DELIVER STATE OF THE ART, PATIENT-CENTERED CARE; TO DISSEMINATE EDUCATION TO SUPPORT OUR PATIENTS, CAREGIVERS AND PROVIDERS; TO GIVE VOICE TO THE NEEDS OF OUR COMMUNITY THROUGH ADVOCACY AND FUNDRAISING; AND TO ACCELERATE RESEARCH IN PF BOTH DIRECTLY AND THROUGH COLLABORATIONS AND NETWORKING. THE CCN BRINGS HEALTHCARE PROVIDERS TOGETHER TO ADDRESS GAPS IN CARE, RESEARCH AND EDUCATION IN PULMONARY FIBROSIS. CORPORATE PARTNERSHIPS:THE PFF SEEKS SPONSORSHIPS TO SUPPORT ITS MISSION-DRIVEN ACTIVITIES FROM PATIENT-SERVICE AND EDUCATION PROGRAMS TO RESEARCH INITIATIVES. DURING THIS FISCAL YEAR, THE PFF CORPORATE PARTNERSHIPS TEAM OBTAINED SPONSORSHIP TO SUPPORT THE PFF SUMMIT THE WORLD'S LARGEST CONFERENCE FOCUSED ON PULMONARY FIBROSIS AND INTERSTITIAL LUNG DISEASE RESEARCH AND EDUCATION, SEPTEMBER'S PULMONARY FIBROSIS AWARENESS MONTH, THE PFF EDUCATION SYMPOSIUM A VIRTUAL CONFERENCE FOR PATIENTS AND CAREGIVERS FOCUSED ON DISEASE MANAGEMENT, THE PFF CARE CENTER NETWORK, THE PFF REGISTRY, THE PFF PATIENT EDUCATION MATERIALS PROGRAM, THE PFF SUPPORT GROUP LEADERS NETWORK, THE PFF AMBASSADORS PROGRAM, AND THE PFF DISEASE EDUCATION WEBINAR SERIES.IN 2024, THE PFF LAUNCHED THE PFF CORPORATE COMMITTEE. MEMBERS OF THE PHARMACEUTICAL INDUSTRY, SPECIALTY PHARMACY, AND OTHER KEY GROUPS INVOLVED IN PULMONARY FIBROSIS AND INTERSTITIAL LUNG DISEASE TREATMENT MEET SEVERAL TIMES ANNUALLY TO DISCUSS THE NEEDS OF THE PF COMMUNITY AND IDENTIFY POTENTIAL COLLABORATIONS TO HELP IMPROVE THE LIVES OF THOSE LIVING WITH PULMONARY FIBROSIS. ADDITIONALLY, THE PFF WORKS WITH COMPANIES TO REVIEW CLINICAL TRIAL PROTOCOLS, PARTICIPATE IN PATIENT ADVISORY BOARDS, SUPPORT PATIENT RECRUITMENT FOR CLINICAL TRIALS AND MARKET RESEARCH, AND STUDIES EVALUATING DATA FROM THE PFF REGISTRY. THE PROGNOSTIC LUNG FIBROSIS CONSORTIUM (PROLIFIC) CONVENES QUARTERLY THROUGHOUT THE FISCAL YEAR TO REVIEW THE RESULTS OF THE BIOMARKER ANALYSIS AND SUBMIT THE FINDINGS FOR PUBLICATION. PROLIFIC IS A CONSORTIUM OF COMPANIES AND FOUNDATIONS DEVELOPING TESTS TO IDENTIFY IMPORTANT MARKERS FOR PULMONARY FIBROSIS (PF). TWELVE INITIAL BIOMARKERS WERE SELECTED FOR THEIR POTENTIAL TO PREDICT DISEASE COURSE OF PF AND TO ASSESS HOW WELL A DRUG WILL WORK IN A SPECIFIC INDIVIDUAL. FINDINGS WILL BE USED TO INFORM AND COMPARE RESULTS ACROSS DIFFERENT CLINICAL TRIALS TO EXPEDITE REGULATORY APPROVAL OF NEW DRUGS. SUPPORT GROUPS:THE PFF SUPPORT GROUP LEADER NETWORK (SGLN) PROVIDES A FORUM FOR PF SUPPORT GROUP LEADERS TO CONNECT, EXCHANGE IDEAS, AND SHARE BEST PRACTICES. THE SGLN CONSISTS OF OVER 130 SUPPORT GROUPS ACROSS THE COUNTRY. THE PFF PROVIDES AN ONLINE PLATFORM FOR GROUPS TO MEET AND CONNECT WITH OTHERS ACROSS THE NATION. THE PFF PROVIDES PHONE-BASED VIRTUAL SUPPORT GROUPS FOR MEMBERS OF THE PF COMMUNITY WHO EITHER DO NOT HAVE A LOCAL SUPPORT GROUP OR ARE LOOKING FOR ADDITIONAL SUPPORT BETWEEN THEIR OTHER MEETINGS. THERE ARE THREE GROUPS INCLUDING A GROUP FOR GENERAL DISEASE EDUCATION, ONE FOR LUNG TRANSPLANTATION, AND ONE FOR CAREGIVING. THE PFF PROVIDES QUARTERLY TRAINING TO THE PFF SUPPORT GROUP LEADER NETWORK THROUGHOUT THE YEAR.IN OCTOBER 2023, THE PFF HOSTED A VIRTUAL MEETING ONLINE FOR VOLUNTEERS, INCLUDING SUPPORT GROUP LEADERS, PFF AMBASSADORS, AND PFF ADVOCATES TO RECEIVE UP-TO DATE INFORMATION ON THE FOUNDATION, RESOURCES AVAILABLE, AND TRAINING FOR THEIR ROLES. OUTREACH AND AWARENESS:THE PFF AMBASSADOR PROGRAM EMPOWERS PATIENTS, CAREGIVERS, LUNG TRANSPLANT RECIPIENTS, FAMILY MEMBERS, AND THOSE WHO HAVE LOST A LOVED ONE TO SERVE AS SPOKESPEOPLE FOR THE PF COMMUNITY. COMPRISING A DIVERSE AND DYNAMIC GROUP OF VOLUNTEERS FROM ACROSS THE UNITED STATES, PFF AMBASSADORS UNDERGO FORMAL TRAINING TO PREPARE FOR SPEAKING AND ADVOCATING ON BEHALF OF THE PULMONARY FIBROSIS FOUNDATION AND THE PULMONARY FIBROSIS COMMUNITY. PFF AMBASSADORS REPRESENT THE FOUNDATION AS THEY ATTEND EVENTS VIRTUALLY AND IN-PERSON AROUND THE COUNTRY. EVENTS INCLUDE PFF CARE CENTER NETWORK EVENTS, SUPPORT GROUP MEETINGS, EDUCATION EVENTS, FUNDRAISERS, OTHER DISEASE AWARENESS AND EDUCATION PROGRAMS, AND A VARIETY OF MEDIA OPPORTUNITIES. PFF AMBASSADORS PROMOTE DISEASE AWARENESS, PROVIDE UP-TO-DATE INFORMATION, AND OFFER HOPE AND INSPIRATION TO THOSE AFFECTED BY PULMONARY FIBROSIS. IN APRIL 2024, THE PFF WELCOMED 15 NEW PFF AMBASSADORS TO THE PROGRAM. THE PFF PROVIDES MONTHLY TRAINING TO PFF AMBASSADORS THROUGHOUT THE YEAR. ADVOCACY:THE PFF ENGAGED POLICYMAKERS TO REQUEST INCREASED FUNDING FOR PULMONARY FIBROSIS RESEARCH AND IMPROVED ACCESS TO OXYGEN FOR PATIENTS. THE PFF HOSTED A VIRTUAL HILL DAY ON MARCH 6, 2024, TO PROVIDE CONSTITUENTS WITH THE OPPORTUNITY TO MEET WITH THEIR MEMBERS OF CONGRESS AND RAISE AWARENESS ABOUT THE IMPACT OF PULMONARY FIBROSIS AND THE NEED FOR RESEARCH FUNDING. THE PFF WORKED WITH OTHER PATIENT AND PROFESSIONAL ADVOCACY GROUPS TO GET OXYGEN REFORM LEGISLATION INTRODUCED IN THE U.S. CONGRESS AND MET WITH CONGRESSIONAL OFFICES TO IDENTIFY ADDITIONAL SPONSORS FOR THE LEGISLATION. 3282173 24888 299550 6925479 1 1 0 1 0 0 0 0 0 0 1 0 0 1 1 1 1 0 0 0 0 0 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 50 0 43 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 14 14 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AK AR CA CO CT DC FL GA IL KS KY ME MD MA MI MN MS NH NJ NY NC ND OK OR PA RI SC TN UT VA WA WV WI X X SCOTT STASZAK 3122652182 230 E OHIO ST SUITE 500 CHICAGO IL 60611 WILLIAM SCHMIDT CEO - TERM / DIRECTOR 1.00 X X 174402 0 5968 FRANCK RAHAGHI PAST PRESIDENT & CEO - TERM 40.00 X X 127225 0 7180 DAVID MCNINCH CHAIR 1.00 X X 0 0 0 LAURIE CHANDLER CFP VICE-CHAIR & TREASURER 1.00 X X 0 0 0 PATRICIA ROSA SECRETARY 1.00 X X 0 0 0 MARTIN ATTWELL DIRECTOR 1.00 X 0 0 0 KENNETH FANG MD DIRECTOR 1.00 X 0 0 0 TERENCE HALES DIRECTOR 1.00 X 0 0 0 JULIE HALSTON DIRECTOR 1.00 X 0 0 0 JEFF HARRIS DIRECTOR 1.00 X 0 0 0 SUSAN JACOBS RN MS DIRECTOR 1.00 X 0 0 0 HEATHER KAGEL DIRECTOR 1.00 X 0 0 0 PJ KAMANI DIRECTOR 1.00 X 0 0 0 DEVI KUMAR-NAMBIAR JD MBA DIRECTOR 1.00 X 0 0 0 WAYNE PAN MD PHD MBA DIRECTOR 1.00 X 0 0 0 SCOTT STASZAK PRESIDENT & CEO 40.00 X 330382 0 10619 JANET BIANCHETTA CHIEF FINANCIAL OFFICER 40.00 X 148400 0 21303 SETH KLEIN CHIEF DEVELOPMENT OFFICER 40.00 X 202946 0 6852 JESSICA SHORE SR. VP, CLINICAL AFFAIRS AND QUALITY 40.00 X 175210 0 6197 ZOE BUBANY VP, BOARD AND EXTERNAL RELATIONS 40.00 X 147927 0 20984 JENNIFER MEFFORD VP, CORPORATE PARTNERSHIPS 40.00 X 153360 0 5486 KATHERINE BEIN VP, ADVOCACY AND PROGRAMS 40.00 X 132680 0 25460 MARY KIENER SENIOR DIRECTOR, HR & ADMIN 40.00 X 131540 0 14080 1724072 0 124129 12 0 1 0 LC WILLIAMS & ASSOCIATES 150 N MICHIGAN AVE SUITE 3800 CHICAGO IL 60601 PUBLIC RELATIONS 146245 CORNERSTONE GOVERNMENT AFFAIRS 800 MAINE AVENUE SW 7TH FLOOR WASHINGTON DC 20024 LOBBYING 120000 MATTHEW D BRETT SUBSTANCE STRATEGIC VISU 314 WEST SUPERIOR SUITE 300 CHICAGO IL 60654 WRITING AND GRAPHIC DESIGN 105037 3 1720670 4446779 19006 6167449 REGISTRY SPECIFIC 900099 1893657 1893657 PFF SUMMIT 900009 424708 424708 CORPORATE PARTNERSHIPS 900099 281433 281433 CCN SPECIFIC 900099 16667 16667 ADVOCACY LEGISLATIVE 900099 1450 1450 2617915 485349 485349 39138 35209 3929 3929 3929 25900 1720670 1024151 -998251 -998251 3901 6075 -2174 -2174 UBIT AD REVENUE 900099 2000 2000 2000 8276217 2617915 2000 -511147 X 784888 784888 1196834 694755 207578 294501 2496225 1664819 488343 343063 72730 46987 13784 11959 223789 125857 62214 35718 251834 160188 45132 46514 46299 20989 15275 10035 45076 27529 4823 12724 92618 92618 28702 28702 1728447 1641569 32187 54691 33805 33805 245114 111212 5659 128243 170204 97896 7921 64387 257284 173658 25506 58120 274033 238847 27787 7399 4106 3898 29 179 89455 81844 2343 5268 60830 40501 7203 13126 EVENT EXPENSE 878694 865036 10558 3100 DUES AND SUBSCRIPTIONS 28034 18583 9016 435 9009001 6925479 994060 1089462 1685874 1509499 4862572 3896540 124478 13073 564795 447474 826272 393720 276223 242814 58836 33409 7056650 7737418 112882 55667 1502086 1233355 16794445 15320155 1468962 541335 388687 645813 1776594 1475869 1424953 1202424 5059196 3865441 X 7809572 8436792 3925677 3017922 11735249 11454714 16794445 15320155 -732784 452249 0 X 0 1 X 1 0 X 8450064 6636670 8774899 8462441 6167449 38491523 8450064 6636670 8774899 8462441 6167449 38491523 9096674 29394849 257033 152919 233512 414669 485349 1543482 500 2000 2500 2 12865 500 13367 40050872 14515177 0.73390 0.68920 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2019 AMOUNT: $ 2. 2020 AMOUNT: $ 12,865. 2021 AMOUNT: $ 500. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 24303 77628 101931 6823548 6925479 496274 124069 0 0 449439 509970 536193 496274 1991876 2987814 198655 232675 212891 101931 746152 112360 127493 134048 124069 497970 746955 37091 39596 29947 24303 130937 205132 171744 33388 71091 71070 21 33409 OPERATING LEASE RIGHT-OF-USE-ASSETS 1176724 SECURITY DEPOSIT OFFICE 56631 1233355 OPERATING LEASE LIABILITIES 1202424 1202424 X 10142112 452249 412122 864371 9277741 28702 -1030226 -1001524 8276217 10422647 412122 1030226 1442348 8980299 28702 28702 9009001 PART X, LINE 2: THE ORGANIZATION IS EXEMPT FROM INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE (IRC), EXCEPT FOR NET INCOME DERIVED FROM UNRELATED BUSINESS ACTIVITIES. IN ADDITION, THE ORGANIZATION QUALIFIES FOR THE CHARITABLE CONTRIBUTION DEDUCTION UNDER SECTION 170(B)(1)(A) AND HAS BEEN CLASSIFIED AS AN ORGANIZATION OTHER THAN A PRIVATE FOUNDATION UNDER IRC SECTION 509(A). THE ORGANIZATION'S INCOME TAX FILINGS ARE SUBJECT TO AUDIT BY VARIOUS TAXING AUTHORITIES. IN EVALUATING THE ORGANIZATION'S ACTIVITIES, MANAGEMENT BELIEVES ITS POSITION OF TAX-EXEMPT STATUS IS BASED ON CURRENT FACTS AND CIRCUMSTANCES, AND THERE HAVE BEEN NO UNCERTAIN POSITIONS TAKEN RELATED TO RECORDING INCOME TAXES AS OF JUNE 30, 2024 AND 2023. PART XI, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENTS -1,024,151. SALE OF GOODS -6,075. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS 1,024,151. SALE OF GOODS 6,075. PFF WALKS 1236670 1236670 11275 13161 775400 BROADWAY BELTS 509900 484000 25900 67879 156436 1746570 1720670 25900 79154 13161 931836 1024151 -998251 1 JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE 733 N BROADWAY SUITE 117 BALTIMORE MD 21205 520595110 501(C)(3) 100000 0 UNDERSTANDING CURRENT ATTITUDES TOWARD ADVANCE CARE PLANNING AND EVALUATION OF THE IMPACT OF AN EDUCATIONAL TOOL IN PATIENTS WITH PULMONARY FIBROSIS THE REGENTS OF THE UNIVERSITY OF MICHIGAN 1109 GEDDES AVE ANN ARBOR MI 481091274 386006309 501(C)(3) 100000 0 ROLE OF NON-CANONICAL AHR SIGNALING IN CORONAVIRUS EXACERBATIONS OF PULMONARY FIBROSIS UNIVERSITY OF WISCONSIN-MADISON 21 NORTH PARK STREET SUITE 6301 MADISON WI 53715 396006492 501(C)(3) 100000 0 FIBRONECTIN-TARGETING PEPTIDE AS A PET-BASED PROBE FOR ACTIVE PULMONARY FIBROSIS THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE DEPT 0934 LA JOLLA CA 920930934 943067788 501(C)(3) 100000 0 CHARACTERIZATION OF PHENOTYPIC PLASTICITY OF IPF ALVEOLAR EPITHELIAL TYPE II CELLS THE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY 485 BROADWAY ST REDWOOD CA 94063 941156365 501(C)(3) 100000 0 TERT EXPRESSING ALVEOLAR TYPE II CELLS AS UNIPOTENT PROGENITORS WITH EXPANDED PROLIFERATIVE CAPACITIES TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA OFFICE OF THE UNIVERSITY SECRETARY 1 COLLEGE HALL ROOM 211 PHILADELPHIA PA 191046303 231352685 501(C)(3) 125000 0 NANOTECHNOLOGY TARGETING OF ALVEOLAR EPITHELIAL PROTEOSTASIS IN PULMONARY FIBROSIS TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK 211 LOW LIBRARY MC 43324 535 WEST 116TH ST NEW YORK NY 10027 135598093 501(C)(3) 125000 0 INVESTIGATION OF KIF15 AS A NOVEL FAMILIAL PULMONARY FIBROSIS GENE 7 PART I, LINE 2: FOR LARGER GRANTS, THE ORGANIZATION REQUESTS SEMI-ANNUAL REPORTS DETAILING THE USE OF GRANT FUNDS FROM THE RECIPIENT ORGANIZATIONS. X X X X X X 0 0 0 0 0 0 0 0 0 SCOTT STASZAK PRESIDENT & CEO 280860 0 49522 0 0 0 9900 0 719 0 341001 0 0 0 SETH KLEIN CHIEF DEVELOPMENT OFFICER 202446 0 500 0 0 0 6133 0 719 0 209798 0 0 0 JESSICA SHORE SR. VP, CLINICAL AFFAIRS AND QUALITY 174710 0 500 0 0 0 5478 0 719 0 181407 0 0 0 WILLIAM SCHMIDT CEO - TERM / DIRECTOR 116053 0 58349 0 0 0 5249 0 719 0 180370 0 0 0 JANET BIANCHETTA CHIEF FINANCIAL OFFICER 147900 0 500 0 0 0 4839 0 16464 0 169703 0 0 0 ZOE BUBANY VP, BOARD AND EXTERNAL RELATIONS 147427 0 500 0 0 0 4721 0 16263 0 168911 0 0 0 JENNIFER MEFFORD VP, CORPORATE PARTNERSHIPS 152860 0 500 0 0 0 4767 0 719 0 158846 0 0 0 KATHERINE BEIN VP, ADVOCACY AND PROGRAMS 132180 0 500 0 0 0 4352 0 21108 0 158140 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B A COPY OF FORM 990 IS REVIEWED BY THE FINANCE COMMITTEE BEFORE FILING. THE FORM 990 IS AVAILABLE TO ALL BOARD MEMBERS BEFORE FILING THE FORM. FORM 990, PART VI, SECTION B, LINE 12C THE ORGANIZATION HAS A CONFLICT OF INTEREST POLICY WITHIN THE EMPLOYEE HANDBOOK AND ALL EMPLOYEES ARE REQUIRED TO ADHERE TO THE POLICY. EMPLOYEES SIGN A DISCLOSURE FORM EACH YEAR. ANNUALLY, BOARD MEMBERS ARE SENT A FORM TO FILL OUT STATING WHETHER THEY HAVE ANY CONFLICTS OF INTEREST. IF SUCH CONFLICTS EXIST, THEN THEY FILL OUT AN ADDITIONAL FORM OUTLINING THOSE CONFLICTS. THE EXECUTIVE COMMITTEE REVIEWS ANY CONFLICTS THAT ARISE. FORM 990, PART VI, SECTION B, LINE 15 CHIEF EXECUTIVE OFFICER AND CHIEF OPERATING OFFICER'S COMPENSATION WAS APPROVED BY THE EXECUTIVE COMMITTEE, WHICH SERVES AS THE COMPENSATION COMMITTEE. THIS APPROVAL WAS BASED ON A REVIEW BY AN INDEPENDENT COMPENSATION CONSULTANT AND IS SUPPORTED BY A WRITTEN EMPLOYMENT CONTRACT. THE COMMITTEE ALSO REVIEWED COMPENSATION SURVEYS AND FORM 990S OF OTHER ORGANIZATIONS TO ENSURE THE COMPENSATION WAS APPROPRIATE. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST AND ON THE ORGANIZATION'S WEBSITE. THE ORGANIZATION DOES NOT MAKE ITS GOVERNING DOCUMENTS AND CONFLICT OF INTEREST POLICY AVAILABLE TO THE PUBLIC. FORM 990, PART IX, LINE 11G CONSULTING: PROGRAM SERVICE EXPENSES 1,523,294. MANAGEMENT AND GENERAL EXPENSES 20,145. FUNDRAISING EXPENSES 52,263. TOTAL EXPENSES 1,595,702. OUTSIDE SERVICES: PROGRAM SERVICE EXPENSES 106,907. MANAGEMENT AND GENERAL EXPENSES 9,074. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 115,981. EMPLOYEE ADMINISTRATION FEES: PROGRAM SERVICE EXPENSES 11,368. MANAGEMENT AND GENERAL EXPENSES 2,968. FUNDRAISING EXPENSES 2,428. TOTAL EXPENSES 16,764.