2024-04-10T23:23:02-05:00 2023-06-30 362938874 OSTROW REISIN BERK & ABRAMS LTD 455 N CITYFRONT PLAZA DR SUITE 1600 CHICAGO IL 60611 990 2022-07-01 841558631 PULMONARY FIBROSIS FOUNDATION PULM 3122652182 230 EAST OHIO STREET 500 CHICAGO IL 60611 SCOTT STASZAK INTERIM CEO AND COO 3122652182 2024-04-09 1 SCOTT STASZAK 999009999 0 JAMES G QUAID P00641738 3126707444 2024-04-09 0 AAL1 IAL1 2022 2023-04-26 12:10:37Z SCOTT STASZAK 230 EAST OHIO STREET 500 CHICAGO IL 60611 13238928 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. 15 15 42 3521 500 0 8774899 8462441 2545747 3896008 297956 419803 -610699 -961715 11007903 11816537 319696 562831 0 0 4143847 4198627 0 0 1338172 5222076 5580357 9685619 10341815 1322284 1474722 17064469 16794445 7089463 5059196 9975006 11735249 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 2672028 3014079 PFF REGISTRY: THE PFF REGISTRY PROGRAM RECORDED A TOTAL REVENUE OF $3,260,239, ENCOMPASSING CONTRIBUTIONS AND SPONSORSHIPS AMOUNTING TO $246,160 AND PROGRAM SERVICE REVENUE TOTALING $3,014,079. 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.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.TO LEARN MORE ABOUT THE PFF REGISTRY, VISIT: PFFREGISTRY.ORG. 1079556 879117 CORPORATE PARTNERSHIPS: TOTAL REVENUE RECOGNIZED FOR CORPORATE PARTNERSHIPS WAS $991,617, WHICH INCLUDED CONTRIBUTIONS AND SPONSORSHIPS OF $112,510, IN ADDITION TO THE PROGRAM SERVICE REVENUE OF $879,107.PFF SEEKS SPONSORSHIPS TO SUPPORT ITS MISSION-DRIVEN ACTIVITIES FROM PATIENT-SERVICE AND EDUCATION PROGRAMS TO THE PFF PATIENT REGISTRY, TO PULMONARY FIBROSIS AWARENESS MONTH IN SEPTEMBER, AND THE PFF SUMMIT, THE WORLD'S LARGEST CONFERENCE FOCUSED ON PULMONARY FIBROSIS AND INTERSTITIAL LUNG DISEASE RESEARCH AND EDUCATION. ADDITIONALLY, PFF WORKS WITH RESEARCH COMPANIES TO SUPPORT PROTOCOL REVIEW, RECRUITMENT EFFORTS AND HELP ENSURE THAT THE PATIENT VOICE IS INCLUDED THROUGHOUT THE DRUG DISCOVERY PROCESS. 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. A BUDGET HAS BEEN APPROVED TO TEST ADDITIONAL COHORTS FOR COMPARATIVE ANALYSIS IN THE COMING YEAR. 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. THE PFF IS ENGAGED IN A MULTI-YEAR FEDERALLY FUNDED RESEARCH COLLABORATION CALLED PRECISIONS, WHICH IS LAYING THE FOUNDATION FOR PERSONALIZED MEDICINE IN PF. BIOMARKERS BIOLOGICAL MOLECULES FOUND IN BLOOD THAT CONVEY INFORMATION ABOUT DISEASE STATUS PLAY A CRITICAL ROLE IN PRECISIONS. THIS AMBITIOUS CLINICAL TRIAL IS THE FIRST EVER TO APPLY THE PRINCIPLES OF PRECISION MEDICINE TO THE DIAGNOSIS AND TREATMENT OF INTERSTITIAL PULMONARY FIBROSIS (IPF). DATA AND BLOOD FROM THE PFF REGISTRY ARE BEING USED IN THE STUDY TO HELP RAPIDLY IDENTIFY CLINICAL TRIAL PARTICIPANTS WHO ARE ELIGIBLE FOR THE STUDY. PRECISIONS HAS MET ITS STUDY RECRUITMENT GOAL AND WILL CONTINUE COLLECTING FOLLOW-UP DATA FROM THOSE ENROLLED. 975984 EDUCATION:THE PULMONARY FIBROSIS FOUNDATION (PFF) IS COMMITTED TO PROVIDING QUALITY DISEASE EDUCATION TO THE PULMONARY FIBROSIS COMMUNITY. THE PFF STRIVES TO PROVIDE PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND HEALTH CARE PROVIDERS WITH THE RESOURCES NECESSARY TO MORE FULLY UNDERSTAND PF AND ITS IMPACT AS WELL AS PROVIDE PATIENTS WITH THE TOOLS NECESSARY TO LIVE WITH THE DISEASE AND IMPROVE THEIR QUALITY OF LIFE.IN NOVEMBER 2022, THE PFF INTRODUCED THE PFF EDUCATION SYMPOSIUM, A VIRTUAL CONFERENCE FOR PATIENTS, CAREGIVERS, AND FAMILIES THAT PROVIDED DISEASE EDUCATION AND NETWORKING OPPORTUNITIES.THE PFF DISEASE EDUCATION WEBINAR SERIES HAS SERVED AS AN ESSENTIAL PROGRAM TO ADVANCE OUR MISSION OF EDUCATING THE PF COMMUNITY. THE WEBINAR SERIES PROVIDES A FREE, CONVENIENT WAY FOR PATIENTS, CAREGIVERS, AND FAMILIES TO LEARN FROM AND CONNECT WITH PF SPECIALISTS ON A VARIETY OF IMPORTANT TOPICS. DURING FY22-23, THE PFF DISEASE EDUCATION WEBINAR SERIES HOSTED SEVEN WEBINARS ALONG WITH AN ADDITIONAL WEBINAR IN CONJUNCTION WITH THE AMERICAN THORACIC SOCIETY PUBLIC ADVISORY ROUNDTABLE. THE PFF DISEASE EDUCATION WEBINAR SERIES TOPICS INCLUDED: MANAGING COMORBIDITIES, CLINICAL TRIALS, PULMONARY HYPERTENSION AND INTERSTITIAL LUNG DISEASE, DISEASE PROGRESSION, AND MORE. THE PFF DISEASE EDUCATION WEBINAR SERIES HOSTED OVER 1,200 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 39,000 VIEWS ON YOUTUBE ALONE. IN ADDITION TO THE PFF DISEASE EDUCATION WEBINAR SERIES, THE FOUNDATION HAS DEVELOPED A LIBRARY OF DISEASE EDUCATION MATERIALS FOR PULMONARY FIBROSIS PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND FRIENDS. DURING FY22-23, THE PULMONARY FIBROSIS FOUNDATION DEVELOPED THE FOLLOWING MATERIALS: "SYMPTOM MANAGEMENT FOR PF: HOW PALLIATIVE CARE CAN IMPROVE QUALITY OF LIFE," "CAREGIVING: A GUIDE FOR FAMILY AND FRIENDS," "INTERSTITIAL PNEUMONIA WITH AUTOIMMUNE FEATURES" FACT SHEET, "POST COVID-19 INTERSTITIAL LUNG DISEASE" FACT SHEET, "MOLD-RELATED HYPERSENSITIVITY PNEUMONITIS" FACT SHEET, "TREPROSTINIL" FACT SHEET, "MOLD REMEDIATION" FACT SHEET, AND "TOCILIZUMAB" FACT SHEET. ADDITIONALLY, THE PFF CONTINUED TO TRANSLATE MATERIALS INTO SPANISH. 2998485 562831 2812 OTHER PROGRAM SERVICE ACCOMPLISHMENTSRESEARCH: 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 FIVE GRANTS OF $100,000 EACH OVER A TWO YEAR PERIOD IN THE 2023 CYCLE. THE PFF ALSO CONSIDERS OTHER SMALLER GRANTS THAT FIT THE RESEARCH GUIDELINES. 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 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.MARKETING: THE MARKETING PROGRAM RECORDED A TOTAL REVENUE OF $418,695, WHICH WAS COMPRISED OF IN-KIND ADVERTISING FROM A MAJOR RETAILER AND TWO OTHER COMPANIES. THE PFF HAS DESIGNATED SEPTEMBER AS PULMONARY FIBROSIS AWARENESS MONTH. THE IN-KIND ADVERTISING FROM A MAJOR RETAILER INCLUDED REGULAR IN-STORE ADVERTISEMENTS ACROSS ALL STORES IN THE UNITED STATES DURING THE MONTH OF SEPTEMBER. THIS ADVERTISING WAS TO SPREAD AWARENESS OF PULMONARY FIBROSIS AND THE FOUNDATION.THE FOUNDATION LAUNCHED THE MARKETING AND COMMUNICATIONS FOR THE PFF COMMUNITY REGISTRY IN JULY 2022 AND REACHED AN ENROLLMENT OF MORE THAN 1,600 ENROLLEES THE FIRST YEAR. OUR EFFORTS FEATURED EMAIL AND SOCIAL MEDIA CAMPAIGNS, DEVELOPMENT AND DISTRIBUTION OF PRINT MATERIALS, MEDIA OUTREACH, AND COMMUNICATION WITH ALL PFF CONSTITUENCIES. WE SHOWCASED THE REGISTRY AT PFF WALKS ACROSS THE COUNTRY AND AT EVENTS WITH HEALTHCARE PROVIDERS, INCLUDING CHEST AND ATS. DURING THE WINTER, WE HELD FOCUS GROUPS TO DEVELOP INSIGHTS INTO OUR MESSAGING AND WE IMMEDIATELY IMPLEMENTED KEY LEARNINGS. IN APRIL, WE HELD A RECRUITMENT DRIVE TO ENCOURAGE ALL ELIGIBLE PARTICIPANTS TO ENROLL. THE PFF CONVENED EIGHT PARTNER ORGANIZATIONS TO PRESENT THE SECOND ANNUAL ILD DAY TO RAISE AWARENESS OF INTERSTITIAL LUNG DISEASE. AN EDUCATIONAL WEBINAR HOSTED BY INTERNATIONALLY RECOGNIZED ILD EXPERT, FOCUSED ON "PROGRESSIVE PULMONARY FIBROSIS: WHAT PATIENTS NEED TO KNOW, AND PROVIDED INFORMATION TO HELP PATIENTS BETTER UNDERSTAND THE DISEASE AND ITS PROGRESSION, ITS SYMPTOMS, AND AVAILABLE TREATMENTS. ILD DAY 2022 GENERATED MORE THAN 22 MILLION CAMPAIGN IMPRESSIONS INCLUDING MEDIA RELATIONS, SOCIAL MEDIA, DIGITAL ADS, AND TRAFFIC TO THE ILD DAY LANDING PAGE. 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 FEBRUARY 22, 2023 TO PROVIDE CONSTITUENTS WITH THE OPPORTUNITY TO MEET WITH THEIR MEMBERS OF CONGRESS AND RAISE AWARENESS ABOUT THE IMPACT OF PULMONARY FIBROSIS IN THEIR LIVES AND THE NEED FOR RESEARCH FUNDING. THE PFF WORKED WITH OTHER PATIENT AND PROFESSIONAL ADVOCACY GROUPS TO DEVELOP DRAFT OXYGEN REFORM LEGISLATION AND MET WITH CONGRESSIONAL OFFICES TO START THE PROCESS OF FINDING SPONSORS.SUPPORT GROUPS:THE PFF SUPPORT GROUP LEADER NETWORK PROVIDES A FORUM FOR PF SUPPORT GROUP LEADERS TO CONNECT, EXCHANGE IDEAS, AND SHARE BEST PRACTICES. THE PFF'S SUPPORT GROUP LEADER NETWORK CONSISTS OF OVER 150 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. THESE THREE SUPPORT GROUPS MEET MONTHLY AND TO LEARN MORE ABOUT THEM VISIT HERE: HTTP://BIT.LY/PFFSUPPORT. IN NOVEMBER 2022, THE PFF HOSTED A VIRTUAL MEETING ONLINE FOR VOLUNTEERS TO RECEIVE UP-TO DATE INFORMATION ON THE FOUNDATION, RESOURCES AVAILABLE, AND TRAINING FOR THEIR ROLES. THE PFF PROVIDES QUARTERLY TRAINING TO THE PFF SUPPORT GROUP LEADER NETWORK THROUGHOUT THE YEAR.OUTREACH AND AWARENESS:THE PFF AMBASSADOR PROGRAM EMPOWERS PATIENTS, CAREGIVERS, LUNG TRANSPLANT RECIPIENTS, FAMILY MEMBERS, THOSE WHO HAVE LOST A LOVED ONE, AND HEALTH CARE PROFESSIONALS 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 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 2023, THE PFF WELCOMED 13 NEW PFF AMBASSADORS TO THE PROGRAM. THE PFF PROVIDES MONTHLY TRAINING TO PFF AMBASSADORS THROUGHOUT THE YEAR. PFF SUMMIT : PFF SUMMIT 2023 IS THE PFF'S BIENNIAL INTERNATIONAL HEALTH CARE CONFERENCE ON PULMONARY FIBROSIS (PF). 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 2021 FORM 990). 2998485 562831 2812 7726053 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 1 0 0 0 0 0 0 0 0 1 44 0 1 42 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 15 15 0 0 1 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 PRESIDENT & CHIEF EXECUTIVE OFFICER 40.00 X X 290947 0 9520 DAVID MCNINCH INTERIM CHAIR 1.00 X X 0 0 0 TERENCE HALES SECRETARY 1.00 X X 0 0 0 LAURIE CHANDLER CFP INTERIM VICE-CHAIR & TREASURER 1.00 X X 0 0 0 GEORGE ELIADES PHD DIRECTOR 1.00 X 0 0 0 JEFF HARRIS DIRECTOR 1.00 X 0 0 0 ANDY LIMPER MD DIRECTOR 1.00 X 0 0 0 JULIE HALSTON DIRECTOR 1.00 X 0 0 0 MARTIN ATTWELL DIRECTOR 1.00 X 0 0 0 SUSAN JACOBS RN MS DIRECTOR 1.00 X 0 0 0 PATRICIA ROSA DIRECTOR 1.00 X 0 0 0 PJ KAMANI DIRECTOR 1.00 X 0 0 0 HEATHER KAGEL DIRECTOR 1.00 X 0 0 0 WAYNE PAN MD PHD MBA DIRECTOR (AS OF 11/2022) 1.00 X 0 0 0 KENNETH FANG MD DIRECTOR (AS OF 11/2022) 1.00 X 0 0 0 ERIN MCGARRY CPA DIRECTOR (AS OF 11/2022) 1.00 X 0 0 0 DEVI KUMAR-NAMBIAR JD MBA DIRECTOR (AS OF 11/2022) 1.00 X 0 0 0 SCOTT STASZAK CHIEF OPERATING OFFICER 40.00 X 248812 0 8196 SETH KLEIN CHIEF DEVELOPMENT OFFICER 40.00 X 201789 0 6831 JESSICA SHORE VP, RESEARCH & PROGRAMS 40.00 X 169941 0 6052 JANET BIANCHETTA VP, FINANCE 40.00 X 164421 0 13041 JUNELLE SPELLER VP, PFF REGISTRY (UNTIL 03/23) 40.00 X 167707 0 4777 JENNIFER MEFFORD VP, CORPORATE PARTNERSHIPS 40.00 X 158116 0 5430 LAURA SADLER CHIEF MARKETING OFFICER (UNTIL 08/22) 40.00 X 170393 0 18270 1572126 0 72117 13 0 1 0 LC WILLIAMS & ASSOCIATES 150 N MICHIGAN AVE SUITE 3800 CHICAGO IL 60601 PUBLIC RELATIONS 269537 DOROTHY COYLE RACLAW 5855 N KENNETH AVE CHICAGO IL 60646 MARKETING CONSULTING 135070 CORNERSTONE GOVERNMENT AFFAIRS 800 MAINE AVENUE SW 7TH FLOOR WASHINGTON DC 20024 LOBBYING 130000 3 1380000 580675 6501766 387744 8462441 REGISTRY SPECIFIC 900099 3014079 3014079 CORPORATE PARTNERSHIPS 900099 879117 879117 CCN SPECIFIC 900099 1487 1487 ADVOCACY LEGISLATIVE 900099 1325 1325 3896008 414669 414669 416665 411531 5134 5134 5134 40070 1380000 1009449 -969379 -969379 8575 1411 7164 7164 UBIT AD REVENUE 900099 500 500 500 11816537 3896008 500 -542412 X 562831 562831 854773 305031 128849 420893 2783128 1951140 511579 320409 79876 52745 17722 9409 233794 114530 78750 40514 247056 145802 49967 51287 37029 18638 12680 5711 36911 21449 7195 8267 184891 184891 35875 35875 3698520 3248363 297477 152680 204910 204660 250 407362 260979 16603 129780 219476 153278 11095 55103 251455 157817 49332 44306 101201 65619 31413 4169 848 848 101146 93044 3684 4418 48916 33427 6281 9208 EVENT EXPENSE 203133 113377 11028 78728 PROGRAM MATERIALS 28077 28077 DUES AND SUBSCRIPTIONS 20607 9507 8060 3040 10341815 7726053 1277590 1338172 1111860 1685874 5356166 4862572 204965 124478 2586813 564795 552239 826272 274404 215568 73278 58836 6557385 7056650 190132 112882 431631 1502086 17064469 16794445 2221067 1468962 350000 388687 3937721 1776594 580675 0 1424953 7089463 5059196 X 6338585 7809572 3636421 3925677 9975006 11735249 17064469 16794445 1474722 285521 0 X 0 1 X 1 0 X 8449631 8450064 6636670 8774899 8462441 40773705 8449631 8450064 6636670 8774899 8462441 40773705 11746173 29027532 273967 257033 152919 233512 414669 1332100 500 500 234 2 12865 500 13601 42119906 14077782 0.68920 0.65140 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2018 AMOUNT: $ 234. 2019 AMOUNT: $ 2. 2020 AMOUNT: $ 12,865. 2021 AMOUNT: $ 500. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 29947 182944 212891 7510962 7723853 536193 134048 0 0 602580 449439 509970 536193 2098182 3147273 280017 198655 232675 212891 924238 150645 112360 127493 134048 524546 786819 40551 37091 39596 29947 147185 203313 144829 58484 71091 70739 352 58836 OPERATING LEASE RIGHT-OF-USE-ASSETS 1445455 SECURITY DEPOSIT OFFICE 56631 1502086 OPERATING LEASE LIABILITIES 1424953 1424953 X 13495738 285521 418695 704216 12791522 35875 -1010860 -974985 11816537 11735495 418695 1010860 1429555 10305940 35875 35875 10341815 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, 2023. PART XI, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENTS -1,009,449. SALE OF GOODS -1,411. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS 1,009,449. SALE OF GOODS 1,411. PFF WALKS 950692 950692 10089 7553 729886 BROADWAY BELTS 469378 429308 40070 1099 260823 1420070 1380000 40070 11188 7553 990709 1009450 -969380 1 UNIVERSITY OF CHICAGO 6054 S DREXEL AVE STE 300 CHICAGO IL 60637 362177139 501(C)(3) 75000 0 IDENTIFYING THE IMPACT OF WORKPLACE EXPOSURES ON QUALITY OF LIFE, LUNG FUNCTION, AND SURVIVAL ACROSS INTERSTITIAL LUNG DISEASE THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO 490 ILLINOIS ST 6TH FL SAN FRANCISCO CA 94143 946036493 501(C)(3) 75000 0 DEVELOPMENT OF A TELEHEALTH INTERVENTION TARGETING BARRIERS TO EARLY GUIDELINE-CONCORDANT IDIOPATHIC PULMONARY FIBROSIS CARE FOR RURAL POPULATIONS YALE UNIVERSITY PO BOX 208327 NEW HAVEN CT 06520 060646973 501(C)(3) 75000 0 NEURO-INNATE INTERACTIONS IN PULMONARY FIBROSIS THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET PHILADELPHIA PA 19104 231352685 501(C)(3) 75000 0 METABOLIC DYSFUNCTION AND EPIGENETIC REPROGRAMMING IN DISTAL ALVEOLAR EPITHELIAL PROGENITOR CELL FUNCTION AND IPF 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) 122500 0 INVESTIGATION OF KIF15 AS A NOVEL FAMILIAL PULMONARY FIBROSIS GENE THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA OFFICE OF THE UNIVERSITY SECRETARY 1 COLLEGE HALL ROOM 211 PHILADELPHIA PA 191046303 231352685 501(C)(3) 122500 0 NANOTECHNOLOGY TARGETING OF ALVEOLAR EPITHELIAL PROTEOSTASIS IN PULMONARY FIBROSIS 6 6 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 1 0 0 0 0 0 0 0 0 WILLIAM SCHMIDT PRESIDENT & CHIEF EXECUTIVE OFFICER 290947 0 0 0 0 0 8788 0 732 0 300467 0 0 0 SCOTT STASZAK CHIEF OPERATING OFFICER 248812 0 0 0 0 0 7464 0 732 0 257008 0 0 0 SETH KLEIN CHIEF DEVELOPMENT OFFICER 190258 0 11531 0 0 0 6099 0 732 0 208620 0 0 0 LAURA SADLER CHIEF MARKETING OFFICER (UNTIL 08/22 129416 0 0 0 40977 0 3994 0 14276 0 188663 0 0 0 JANET BIANCHETTA VP, FINANCE 151147 0 13274 0 0 0 4769 0 8272 0 177462 0 0 0 JESSICA SHORE VP, RESEARCH & PROGRAMS 169441 0 500 0 0 0 5320 0 732 0 175993 0 0 0 JUNELLE SPELLER VP, PFF REGISTRY (UNTIL 03/23) 167207 0 500 0 0 0 4045 0 732 0 172484 0 0 0 JENNIFER MEFFORD VP, CORPORATE PARTNERSHIPS 148481 0 9635 0 0 0 4698 0 732 0 163546 0 0 0 PART I, LINE 4A LAURA SADLER $40,977 SEVERANCE PAYMENT RECEIVED X 7 379477 FMV X FOOD & BEVERAGE 1 7011 FMV X TICKETS 1 756 FMV X GIFT CARDS 1 500 COST 0 1 0 FORM 990, PART VI, SECTION A, LINE 4 UPDATED BYLAWS IN NOVEMBER 2022: ADDED PURPOSE IN ARTICLE I, SEE BELOW: THE CORPORATION IS ORGANIZED EXCLUSIVELY FOR CHARITABLE, RELIGIOUS, AND EDUCATIONAL PURPOSES INCLUDING, FOR SUCH PURPOSES, THE MAKING OF DISTRIBUTIONS TO ORGANIZATIONS THAT QUALIFY AS EXEMPT ORGANIZATIONS UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE, OR CORRESPONDING SECTION OF ANY FUTURE FEDERAL TAX CODE. NO PART OF THE NET EARNINGS OF THE CORPORATION SHALL INURE TO THE BENEFIT OF, OR BE DISTRIBUTABLE TO ITS MEMBERS, TRUSTEES, OFFICERS, OR OTHER PRIVATE PERSONS, EXCEPT THAT THE CORPORATION SHALL BE AUTHORIZED AND EMPOWERED TO PAY REASONABLE COMPENSATION FOR SERVICES RENDERED AND TO MAKE PAYMENTS AND DISTRIBUTIONS IN FURTHERANCE OF THE PURPOSES SET FORTH IN THE PURPOSE CLAUSE HEREOF. NOTWITHSTANDING ANY OTHER PROVISION OF THESE BYLAWS, THE CORPORATION SHALL NOT CARRY ON ANY OTHER ACTIVITIES NOT PERMITTED TO BE CARRIED ON (A) BY ANY ORGANIZATION EXEMPT FROM FEDERAL INCOME TAX UNDER SECTION 501 (C) (3) OF THE INTERNAL REVENUE CODE OR A CORRESPONDING SECTION OF ANY FUTURE FEDERAL TAX CODE, OR (B) BY AN ORGANIZATION, CONTRIBUTIONS TO WHICH ARE DEDUCTIBLE UNDER SECTION 170 (C) (2) OF THE INTERNAL REVENUE CODE, OR CORRESPONDING SECTION OF ANY FUTURE FEDERAL TAX CODE. FORM 990, PART VI, SECTION B, LINE 11B A COPY OF FORM 990 IS REVIEWED BY THE FINANCE COMMITTEE BEFOR 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. THE SALARY FOR THE CHIEF MARKETING OFFICER WAS NOT REVIEWED BY THE COMPENSATION COMMITTEE, BUT THE SALARY WAS IN LINE WITH THE MARKET. 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 3,022,081. MANAGEMENT AND GENERAL EXPENSES 164,160. FUNDRAISING EXPENSES 149,730. TOTAL EXPENSES 3,335,971. OUTSIDE SERVICES: PROGRAM SERVICE EXPENSES 217,925. MANAGEMENT AND GENERAL EXPENSES 130,303. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 348,228. EMPLOYEE ADMINISTRATION FEES: PROGRAM SERVICE EXPENSES 8,357. MANAGEMENT AND GENERAL EXPENSES 3,014. FUNDRAISING EXPENSES 2,950. TOTAL EXPENSES 14,321.