Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
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Total |
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Calendar year
(or fiscal year beginning in)
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(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 5,989,047 | 8,449,631 | 8,450,064 | 6,636,670 | 8,774,899 | 38,300,311 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.... | 0 | |||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | 0 | |||||
| 4 | Total. Add lines 1 through 3 | 5,989,047 | 8,449,631 | 8,450,064 | 6,636,670 | 8,774,899 | 38,300,311 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. | 12,699,358 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 25,600,953 | |||||
Calendar year
(or fiscal year beginning in)
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(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 5,989,047 | 8,449,631 | 8,450,064 | 6,636,670 | 8,774,899 | 38,300,311 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 69,969 | 273,967 | 257,033 | 152,919 | 233,512 | 987,400 |
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | 691 | 234 | 2 | 12,865 | 500 | 14,292 |
| 11 | Total support. Add lines 7 through 10 | 39,302,003 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
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| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6 Other distributions (describe in Part VI). See instructions | 6 | |
| 7Total annual distributions. Add lines 1 through 6. | 7 | |
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
8 | |
| 9 Distributable amount for 2021 from Section C, line 6 | 9 | |
| 10 Line 8 amount divided by Line 9 amount | 10 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2021 |
(iii) Distributable Amount for 2021 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2021 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2021 (reasonable cause required-- explain in Part VI). See instructions. |
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| 3 Excess distributions carryover, if any, to 2021: | ||||
| a From 2016....... | ||||
| b From 2017....... | ||||
| c From 2018....... | ||||
| d From 2019....... | ||||
| e From 2020....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2021 distributable amount | ||||
|
i
Carryover from 2016 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2021 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2021 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2021, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
6
Remaining underdistributions for 2021. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
7 Excess distributions carryover to 2022. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2017..... | ||||
| b Excess from 2018..... | ||||
| c Excess from 2019..... | ||||
| d Excess from 2020..... | ||||
| e Excess from 2021..... | ||||
| Facts And Circumstances Test |
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| Return Reference | Explanation |
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| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| CONTINUED FROM FORM 990, PART III, LINE 4A: | . CREATE A ROBUST SOURCE OF INFORMATION TO HELP RESEARCHERS FIND ANSWERS TO BETTER DIAGNOSE, TREAT, AND POTENTIALLY FIND A CURE. . PROVIDE DATA SET TO HELP RESEARCHERS IMPROVE THE QUALITY OF CARE PROVIDED IN US-BASED MEDICAL PRACTICES. . UTILIZE INFORMATION TO SUPPORT LEGISLATIVE AND OTHER ADVOCACY EFFORTS. . ENGAGE AND ENERGIZE THE PF AND ILD COMMUNITY. THE PROGRAM INCLUDES TWO REGISTRIES: . FROM 2016 TO 2022, THE PFF PATIENT REGISTRY HAS COLLECTED PHYSICIAN-REPORTED MEDICAL INFORMATION EVERY SIX MONTHS FROM MORE 2003 PATIENTS WHO OBTAIN CARE AT 42 PARTICIPATING PFF CARE CENTERS ACROSS THE UNITED STATES. . LAUNCHED IN JULY 2022, THE PFF COMMUNITY REGISTRY RELIES ON SELF-REPORTED INFORMATION SUBMITTED BY PATIENTS AND LUNG TRANSPLANT RECIPIENTS WHO HAVE BEEN DIAGNOSED WITH PF OR ILD, AS WELL AS THEIR CAREGIVERS AND BIOLOGICAL FAMILY MEMBERS. COMBINED, THESE REGISTRIES CAPTURE INFORMATION IN AN ELECTRONIC DATABASE ON PATIENT DIAGNOSIS, MEDICAL HISTORY, TREATMENT, AND QUALITY OF LIFE AS WELL AS MEDICAL AND FAMILY HISTORY FROM CAREGIVERS AND FAMILY MEMBERS. DATA ARE MADE ANONYMOUS AND INDEPENDENTLY MANAGED BY A DATA COORDINATING CENTER. IN ADDITION, THE PATIENT REGISTRY COLLECTED BLOOD SAMPLES WITH PATIENT CONSENT. SAMPLES WERE THEN ANONYMIZED AND INDEPENDENTLY MANAGED BY A MEDICAL SPECIMEN STORAGE FACILITY ASSOCIATED WITH THE DATA COORDINATING CENTER. TO LEARN MORE ABOUT THE PFF REGISTRY, VISIT: PFFREGISTRY.ORG. |
| CONTINUED FROM FORM 990, PART III, LINE 4B: | 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. |
| CONTINUED FROM 990, PART III, LINE 4C: | 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. PFF partnered with a continuing medical education (CME) company to create "PFF Conference Highlights: News You Can Use," a CME series that provided comprehensive conference coverage with expert clinicians and patients highlighting key take-aways from the Pulmonary Fibrosis Foundation Summit 2021 in Chicago, IL. This CME series was intended for pulmonologists, cardiologists, cardiopulmonologists, radiologist, respiratory therapists, patients and caregivers, and other healthcare clinicians (MD's, PAs, and NPs) interested in managing patients with ILDs. 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 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. |
| FORM 990, PART III, LINE 4D: | OTHER PROGRAM SERVICES: PROGRAM SUPPORT/MARKETING: WE EXECUTED OUR PINPOINT PF AWARENESS CAMPAIGN TARGETING THROUGH FY 2022 AND GENERATED MORE THAN 1.57 BILLION IMPRESSIONS IN DIGITAL AND EARNED MEDIA THROUGHOUT THE YEAR. THIS CAMPAIGN TARGETED PATIENTS AND POTENTIAL PATIENTS; CAREGIVERS AND FAMILY MEMBERS; HEALTHCARE PROVIDERS; AND AT-RISK POPULATIONS. OUR FIRST MAJOR PUSH CAME IN SEPTEMBER FOR PULMONARY FIBROSIS AWARENESS MONTH (PFAM). DR. AMY HAJARI CASE, PFF SENIOR MEDICAL ADVISOR FOR EDUCATION AND AWARENESS, LED A RADIO MEDIA TOUR IN WHICH SHE COMPLETED 16 INTERVIEWS. DR. CASE REACHED LISTENERS NATIONWIDE TO RAISE AWARENESS OF EVENTS TAKING PLACE DURING PFAM AND TO ENCOURAGE INDIVIDUALS TO NOTE PF SYMPTOMS EARLY AND START CONVERSATIONS WITH THEIR DOCTORS. ADDITIONAL COVERAGE DURING PFAM FEATURED PFF AMBASSADOR AND RETIRED NYPD DETECTIVE TOM FREY WHO HELPED US SHINE A LIGHT ON PF IN TOP-TIER NATIONAL MEDIA IN CONJUNCTION WITH THE 20TH ANNIVERSARY OF 9/11. A FINAL PFAM HIGHLIGHT WAS A SATELLITE MEDIA TOUR SHOWCASING PF ADVOCATE, JULIE HALSTON, WHO RECEIVED THE 2020 ISABELLE STEVENSON TONY AWARD IN RECOGNITION OF HER CHARITABLE WORK FOR THE PFF. THE PFF'S AWARENESS CAMPAIGN SUCCESSFULLY GREW TRAFFIC TO THE ABOUTPF.ORG MICROSITES AND TO THE PFF'S WEBSITE, PULMONARYFIBROISIS.ORG. THE CAMPAIGN DROVE INQUIRIES TO THE PFF HELP CENTER. OUR MEDIA RELATIONS EFFORT PRODUCED FEATURE STORIES ON RELEVANT TOPICS THROUGHOUT THE YEAR. WE SHARED INDUSTRY NEWS ON TOPICS INCLUDING PF RESEARCH, PFF SCHOLARS, PFF POSITION STATEMENTS, AND CLINICAL TRIALS RESOURCES. PFF AMBASSADOR STORIES WERE HIGHLIGHTED IN NATIONWIDE MEDIA THROUGH COVERAGE ABOUT HILL DAY, PFF WALKS, AND TEAM PFF EVENTS. WE ALSO UTILIZED AMBASSADOR STORIES TO PROMOTE THE PFF SUMMIT 2021. WE JOINED EIGHT ORGANIZATIONS TO PRESENT THE FIRST ANNUAL ILD DAY ON SEPTEMBER 15, 2021, TO DRIVE PUBLIC AND HEALTHCARE INDUSTRY AWARENESS OF INTERSTITIAL LUNG DISEASE. IN ADDITION TO THE PFF, THIS COLLABORATION FEATURED THE ARTHRITIS FOUNDATION, FOUNDATION FOR SARCOIDOSIS RESEARCH, THE MYOSITIS ASSOCIATION, PF WARRIORS, SCLERODERMA FOUNDATION, SCLERODERMA RESEARCH FOUNDATION, SJGREN'S FOUNDATION, AND WESCOE FOUNDATION FOR PULMONARY FIBROSIS. ILD DAY PROMOTION INCLUDED A LOGO, MEDIA PLACEMENTS, A MAT RELEASE FOR COMMUNITY NEWSPAPERS, SOCIAL MEDIA AND AN ILD DAY LANDING PAGE. THIS EFFORT GENERATED MORE THAN 632 MILLION IMPRESSIONS. PULMONARY FIBROSIS AWARENESS MONTH (SEPTEMBER) IS WHEN THE PF COMMUNITY UNITES AS A COLLECTIVE VOICE TO ENHANCE DISEASE AWARENESS AND PROVIDE OUTREACH TO THOSE IN NEED. DURING PULMONARY FIBROSIS AWARENESS MONTH, THE PF COMMUNITY JOINED THE PFF AND PARTICIPATED IN THE #BLUEUP4PF CAMPAIGN, ATTENDED VIRTUAL EDUCATIONAL AND TEAM PFF EVENTS, PARTICIPATED IN WEBINARS, AND SPREAD DISEASE AWARENESS THROUGH SOCIAL MEDIA. MORE THAN 100 BUILDINGS ACROSS THE UNITED STATES SHINED BLUE, AND THE PFF REACHED MORE THAN 533,000 USERS ACROSS ALL SOCIAL MEDIA PLATFORMS. FINALLY, THE PFF HOSTED ITS VERY FIRST CLINICAL TRIALS WEEK ON SOCIAL MEDIA. IN CONJUNCTION WITH CLINICAL TRIALS DAY ON MAY 20, THE PFF HOSTED A 7-DAY CAMPAIGN, SHARING ALL ITS VALUABLE RESOURCES ABOUT CLINICAL TRIALS. THE CAMPAIGN ENCOURAGED FOLLOWERS TO LEARN ABOUT CLINICAL TRIALS AND CONSIDER USING THE FOUNDATION'S FINDER TOOL. THE CAMPAIGN RESULTED IN A 65% INCREASE TO TRIALS.PULMONARYFIBROSIS.ORG COMPARED TO PREVIOUS MONTHS AND EARNED MORE THAN 43,500 IMPRESSIONS ACROSS SOCIAL MEDIA. DUE TO THE SUCCESS OF THE CAMPAIGN, THE PFF WILL CONTINUE TO HOST CLINICAL TRIALS WEEK ON AN ANNUAL BASIS. PFF SUMMIT: PFF SUMMIT 2021 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 FEATURES AN INNOVATIVE CONTINUING MEDICAL EDUCATION (CME) PROGRAM FOR HEALTH CARE PROFESSIONALS AND SESSIONS FOR PF PATIENTS AND CAREGIVERS THAT ADDRESS THEIR GROWING EDUCATIONAL NEEDS. (NOTE: SOME EXPENSES FOR THE PFF SUMMIT 2021 WERE INCLUDED IN THE 2020 FORM 990). RESEARCH: 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 28 CREDIBLE EXPERTS FROM THE US AND CANADA. AFTER THEIR REVIEW AND RECOMMENDATIONS, THE PFF FUNDED FOUR $75,000 GRANTS OVER A TWO YEAR PERIOD IN THE 2021 CYCLE. THE PFF ALSO CONSIDERS OTHER SMALLER GRANTS THAT FIT THE RESEARCH GUIDELINES. 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 10, 2022 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. CONGRESS INCLUDED LANGUAGE ABOUT THE NEED FOR PULMONARY FIBROSIS RESEARCH IN THE NATIONAL HEART, LUNG, AND BLOOD INSTITUTE APPROPRIATIONS REPORT AND MAINTAINED PF AS AN ELIGIBLE TOPIC IN THE PEER REVIEWED MEDICAL RESEARCH PROGRAM. THE PFF WORKED WITH OTHER PATIENT AND PROFESSIONAL ADVOCACY GROUPS TO ADVOCATE FOR IMPROVED ACCESS TO OXYGEN FOR PATIENTS. 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. 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 FY 21-22, THE PFF DISEASE EDUCATION WEBINAR SERIES HOSTED EIGHT WEBINARS ALONG WITH TWO ADDITIONAL WEBINARS IN CONJUNCTION WITH THE AMERICAN THORACIC SOCIETY PUBLIC ADVISORY ROUNDTABLE. THE PFF DISEASE EDUCATION WEBINAR SERIES TOPICS INCLUDED: RESEARCH UPDATES, GENETIC COUNSELING, MULTIDISCIPLINARY CARE TEAMS, FINANCIAL ASSISTANCE PROGRAMS AVAILABLE TO PULMONARY FIBROSIS PATIENTS, PALLIATIVE CARE, 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 7,300 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 FY 21-22, THE PULMONARY FIBROSIS FOUNDATION TRANSLATED A TELEMEDICINE BOOKLET AND CHECKLIST INTO HINDI AND MANDARIN LANGUAGES. SINCE THE BEGINNING OF THE COVID-19 PANDEMIC, TELEMEDICINE HAS BEEN A VITAL RESOURCE FOR CONNECTING PATIENTS WITH THEIR HEALTHCARE PROVIDERS. TRANSLATING THESE MATERIALS HELPS TO ENSURE THAT MORE PATIENTS ARE ABLE TO BENEFIT FROM THESE APPOINTMENTS AND ARE PREPARED FOR A SUCCESSFUL VISIT. ADDITIONALLY, THE PFF CREATED SEVERAL NEW FACT SHEETS AS WELL AS DOCUMENTS WITH UPDATED COVID-19 INFORMATION IN BOTH ENGLISH AND SPANISH, ALL AVAILABLE ON THE WEBSITE. |
| 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 OCTOBER 2021, 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 MONTHLY TRAINING TO PFF AMBASSADORS THROUGHOUT THE YEAR. IN APRIL 2022, THE PFF INTRODUCED THE CLASS OF 2022 AMBASSADORS CONSISTING OF 22 NEW MEMBERS TO THE PROGRAM. 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 SAFELY DURING COVID-19 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. THE PFF MEETINGS VARY IN TOPIC AREAS FOCUSED ON GENERAL DISEASE EDUCATION, LUNG TRANSPLANTATION, CAREGIVING, AND SPANISH SPEAKERS. THESE FOUR SUPPORT GROUPS MEET MONTHLY AND TO LEARN MORE ABOUT THEM VISIT HERE: HTTP://BIT.LY/PFFSUPPORT. IN OCTOBER 2021, 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. |
| 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, LINES 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, LINES 15A & B: | 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 | DESCRIPTION:REGISTRY DCC CONSULTING TOTAL FEES:1641133 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:MEDICAL CONSULTING TOTAL FEES:437708 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:MARKETING CONSULTING TOTAL FEES:415289 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:SITE PAYMENTS TOTAL FEES:344300 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:OTHER CONSULTATIONS TOTAL FEES:336517 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:MARKETING CAMPAIGN TOTAL FEES:159513 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:RECRUITMENT FEES TOTAL FEES:104907 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:REGISTRY HRCT COLLECTION TOTAL FEES:49235 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:MERCHANT CARD CHARGES TOTAL FEES:45504 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:WRITING/EDITING TOTAL FEES:34258 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:GRAPHIC DESIGN TOTAL FEES:32050 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:IT CONSULTING TOTAL FEES:28324 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:MEDIA RELATIONS TOTAL FEES:24045 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:OTHER OUTSIDE SERVICES TOTAL FEES:22366 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:CME TOTAL FEES:20000 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:EMPLOYEE ADMIN FEES TOTAL FEES:15028 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:TRANSLATION SERVICES TOTAL FEES:11472 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:STIPENDS TOTAL FEES:11200 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:REGISTRY MANAGEMENT TOTAL FEES:6500 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:PHOTOGRAPHY TOTAL FEES:2165 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:DP CARD PROCESSING FEES TOTAL FEES:10 |
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