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 | |||||
|
Total |
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Calendar year (or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 5,343,299 | 1,278,122 | 5,558,537 | 5,775,504 | 5,989,047 | 23,944,509 |
| 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 | 5,343,299 | 1,278,122 | 5,558,537 | 5,775,504 | 5,989,047 | 23,944,509 |
| 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).. | 10,087,274 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 13,857,235 | |||||
Calendar year
(or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 5,343,299 | 1,278,122 | 5,558,537 | 5,775,504 | 5,989,047 | 23,944,509 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 11,028 | 6,852 | 14,534 | 11,635 | 69,969 | 114,018 |
| 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.).. | 5,860 | 401 | 2,101 | 1,060 | 691 | 10,113 |
| 11 | Total support. Add lines 7 through 10 | 24,081,890 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (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) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (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 in 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): |
|||||
| 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 1-1/2% 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 .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 | ||
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
||
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | ||
| 4 Amounts paid to acquire exempt-use assets | ||
| 5 Qualified set-aside amounts (prior IRS approval required) | ||
| 6 Other distributions (describe in Part VI). See instructions | ||
| 7Total annual distributions. Add lines 1 through 6. | ||
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
||
| 9 Distributable amount for 2019 from Section C, line 6 | ||
| 10 Line 8 amount divided by Line 9 amount | ||
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2019 |
(iii) Distributable Amount for 2019 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2019 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2019 (reasonable cause required-- explain in Part VI). See instructions. |
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| 3 Excess distributions carryover, if any, to 2019: | ||||
| a From 2014....... | ||||
| b From 2015....... | ||||
| c From 2016....... | ||||
| d From 2017....... | ||||
| e From 2018....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2019 distributable amount | ||||
|
i
Carryover from 2014 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from 3f. | ||||
| 4Distributions for 2019 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2019 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from 4. | ||||
|
5
Remaining underdistributions for years prior to 2019, 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 2019. 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 2020. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2015..... | ||||
| b Excess from 2016..... | ||||
| c Excess from 2017..... | ||||
| d Excess from 2018..... | ||||
| e Excess from 2019..... | ||||
| Facts And Circumstances Test |
|---|
| Return Reference | Explanation |
|---|---|
| PART II, SECTION A | THE ORGANIZATION CHANGED THEIR ACCOUNTING YEAR END FROM DECEMBER 31 (CALENDAR YEAR) TO JUNE 30 (FISCAL YEAR) IN 2015. IN ACCORDANCE WITH THE INSTRUCTIONS, THE COLUMNS FOR YEARS 2013-2017 CORRESPOND TO THE 5 PRIOR TAX RETURNS FILED: 2013 = 2014 RETURN (12/31/2014 YEAR-END) 2014 = 2014 SHORT-YEAR RETURN (6/30/2015 YEAR-END) 2015 = 2015 RETURN (6/30/2016 YEAR-END) 2016 = 2016 RETURN (6/30/2017 YEAR-END) 2017 = 2017 RETURN (6/30/2018 YEAR-END) |
| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| FORM 990, PART III, LINES 4A-4C | CONTINUED FROM FORM 990, PART III, LINE 4A: The Registry is an electronic database of patient information that will be de-identified (made anonymous) and independently managed by a data-coordinating center. The Registry also collects biological specimens that patients have agreed to give, which are de-identified and independently managed by a medical specimen storage facility associated with the data-coordinating center. The goals of the PFF Patient Registry are to facilitate the development of effective therapies by providing researchers with data to address specific research questions and facilitate recruitment for clinical trials. To meet these goals, the Registry will collect accurate clinical data on the current care, treatment, and quality of life for patients with diverse forms of pulmonary fibrosis as well as biological specimens when possible. This vital program is close to fully funded for the initial 5 year plan, but additional funding is needed to complete the initial plan and then to allow the PFF Patient Registry to expand beyond the original plan for 2,000 patients, providing more clinical data and expediting research. As of June 30, 2018, the PFF Patient Registry has activated 45 sites and identified 2,001 patients for enrollment. To learn more about the PFF Patient Registry, please go to: http://bit.ly/pffregistry. CONTINUED FROM FORM 990, PART III, LINE 4B: 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 2017 were included in the 2016 Form 990). CONTINUED FROM FORM 990, PART III, LINE 4C: The Foundations printed educational materials created in 2017-2018 for patients, caregivers, and physicians include: Supplemental Oxygen Quick-Start Guide (available in English, Spanish, Simplified Chinese, and Russian), Traveling with Supplemental Oxygen Brochure, PF Fact Sheet, and About PFF Brochure. These printed educational materials are distributed through the PFF Patient Communication Center and at education events and conferences. Website updates include educational information under the Life with PF/Education and Support tab. In order to give patients easier access to locate clinical trials, the PFF added a clinical trials finder application to the website, which can be found at http://bit.ly/pfftrialfinder. The PFF also began its "Life with PF" video series which includes videos on a variety of topics, including disease education, stories from real people living with pulmonary fibrosis and idiopathic pulmonary fibrosis, support group training, and information and services provided by the PFF. These videos can be found at http://bit.ly/lifewithpf and on the Foundations YouTube channel. The PFF Disease Education Webinar Series engages the PF community in an online webinar discussion where they learn from, connect with, and pose questions to leading pulmonary fibrosis specialists each month. Eight webinars were presented in fiscal year 2017-18 and all can be viewed on the PFF website at https://bit.ly/pffwebinars and on the Foundations YouTube channel. |
| FORM 990, PART III, LINE 4D | OTHER PROGRAM SERVICES: 1. PFF Care Center Network: The goal of the PFF Care Center Network is to elevate the standard of care for patients with pulmonary fibrosis by connecting leading medical centers throughout the U.S. that have expertise in treating fibrotic lung diseases. The institutions that comprise the network use a multidisciplinary approach to deliver comprehensive patient care with specialized care teams which include individuals with expertise in pulmonary medicine, rheumatology, radiology, pathology, gastroenterology, and thoracic surgery. This multipronged, collaborative approach is critical to managing a complex disease like pulmonary fibrosis and ensuring individuals receive an accurate diagnosis, obtain quality clinical care, and acquire important support services. Health care experts at CCN sites have extensive experience in the treatment of PF and are dedicated to the care of patients with this disease. The specific cause of PF, whether environmental, related to another illness, unknown (idiopathic), or otherwise, can significantly impact the progression of the disease and treatment options, so it is important that each patient be considered and treated individually. Because of the CCN sites multidisciplinary approach, patients benefit from a more accurate diagnosis, as well as recommendations for continuing care, assistance in delivering essential social services and the opportunity to participate in collaborative research. In March of 2018, the PFF called for new site applications and added 15 additional sites, bringing the total across the United States to 60 centers. This increased the CCNs MSA (Metropolitan Statistical Area) coverage to 80%, bringing it closer to its goal of 90% of the total U.S. population having access to PFF CCN site within a 2-hour or 120-mile radius. Our VP of Research and Development is a new position added this year, which has allowed us to visit to over half of the 60 CCN sites to learn more about their best practices, as well as share the resources available to them at the PFF. To learn more about the PFF Care Center Network or find a PFF Care Center please go to: https://bit.ly/pffwebinars 2. Outreach and Awareness: The PFF Ambassador program empowers patients, caregivers, and health care professionals as spokespersons for the PF community on behalf of the PFF. PFF Ambassadors promote disease awareness, provide up-to-date information, and offer hope and inspiration to those affected by pulmonary fibrosis. PFF Ambassadors are available to speak at PFF Care Center Network events, support group meetings, fundraising events, and other disease awareness and education programs. During the fiscal year, the PFF accepted 16 new PFF Ambassadors into the program. These Ambassadors consist of pulmonary fibrosis patients, caregivers and lung transplant recipients. PFF Ambassadors spoke at 39 events including Support Group meetings, educational conferences and fundraisers. The PFF Daughters program was founded to expand awareness of pulmonary fibrosis, especially among policymakers, via grassroots events and fundraisers across the nation, in order to generate a broader understanding of the impact the disease has on those living with PF and their families. Members of PFF Daughters join together to use their collective voice to increase awareness about PF, advocate for improved care for people with PF, and raise support for continued research efforts. Membership in the PFF Daughters program is open to anyone affected by pulmonary fibrosis - past, present and future. By engaging members of the community through a new outreach tool and adding the more inclusive name of "PFF Advocates," the PFF was able to expand participation to over 500 people. In September, members joined other advocates in Washington, DC to raise awareness about the importance of medical research. In November, members participated in training during the PFF Summit. Members also participated in teleconferences to provide them with relevant updates about research, policy, community events, and the program. The PFF created a video about a member of the PFF Daughters to raise awareness about PF and help others understand the life of a PF patient. Global 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 Global Pulmonary Fibrosis Awareness Month, the PF community joined the PFF and participated in the #BlueUp4PF campaign, attended educational events, hosted Team PFF fundraising events, participated in webinars and spread disease awareness through social media. 3. Research Grants: 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 developing 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 Research Fund supports projects that offer a high likelihood of improving the understanding of PF in the following areas: basic science, translational science, clinical medicine/research and social science/quality of life. The Scientific Advisory Committee administers the peer-reviewed process which funds four $50,000 grants per grant cycle. PFF also sponsors other smaller grants that fit the research guidelines. 4. PFF Patient Communication Center (PCC): The PFF Patient Communication Center (PCC) serves as the central information hub for pulmonary fibrosis patients, caregivers, the Support Group Leader Network (see Support Group section), and health care professionals. The PCC staff answers questions about the availability of support services and other essential resources, and provides information that is tailored and provides information that is tailored to individuals needs. Resources available include: information on PFF programs, educational and advocacy materials, how to find medical care, access to support services, information about available treatments, and how to find clinical trials. The Foundation continuously surveys the PF community to determine additional educational materials or translations of current materials that are needed and works to create and provide those materials. The Foundation also facilitates physician education by providing materials at educational conferences. 5. 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 PFFs Support Group Network consists of over 100 support groups across the country. Support Group leaders have the opportunity to meet in person at least once a year for training and the exchange of ideas, and meet periodically throughout the year via teleconference. Online Support Group Communities are a great way for patients, caregivers, family members, and friends to virtually connect for support and information. For those who are unable to attend an in-person group, or simply want additional interactions between meetings, the Pulmonary Fibrosis Foundation offers two online support communities: PatientsLikeMe and Rareconnect, as well as our new telephone-based support group: PFF Voices. PFF Voices meets once per month over the phone in a conference call setting. Each monthly meeting provides a chance to discuss different topics related to pulmonary fibrosis, share personal stories, ask questions and provide support to one another. Visit http://bit.ly/pffsupport to learn more. 6. Advocacy: During the year, the PFF engaged policymakers in advocating for increased funding for pulmonary fibrosis research and improved access to oxygen for patients. The PFF was a founding member of a coalition of patient and healthcare provider organizations that was created to address patient concerns about access to oxygen. The coalition has been active in meeting with members of Congress and agency representatives to discuss possible improvements to access to oxygen. The PFF worked on drafting a PF-related question for the annual National Institutes of Health hearing held by the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. The PFF also worked with congressional champions on drafting congressional report language related to pulmonary fibrosis. |
| FORM 990, PART VI, 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. BOARD MEMBERS ARE SENT A FORM TO FILL OUT STATING WHETHER THEY HAVE ANY CONFLICTS OF INTEREST. IF SUCH CONFLICTS EXISTS, 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 Programs and Business Development 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:SITE PAYMENTS TOTAL FEES:1333876 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:MEDICAL CONSULTANT TOTAL FEES:470594 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:OTHER CONSULTANT TOTAL FEES:409447 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:REGISTRY DCC CONSULTANT TOTAL FEES:230070 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:COLLECTION KIT TOTAL FEES:130125 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:RECRUITMENT TOTAL FEES:110610 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:OTHER OUTSIDE SERVICES TOTAL FEES:76531 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:MERCHANT CARD CHARGES TOTAL FEES:45928 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:CME TOTAL FEES:45875 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:MARKETING CONSULTANT TOTAL FEES:35313 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:MEDIA RELATIONS TOTAL FEES:24212 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:DP CARD PROCESSING FEES TOTAL FEES:21072 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:GRAPHIC DESIGN TOTAL FEES:18058 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:IT CONSULTANT TOTAL FEES:15467 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:EMPLOYEE ADMINISTRATION TOTAL FEES:13419 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:STIPENDS TOTAL FEES:13250 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:INVESTMENT FEES TOTAL FEES:11409 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:WRITING/EDITING TOTAL FEES:9565 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:PHOTOGRAPHY TOTAL FEES:7875 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:TRANSLATION TOTAL FEES:2324 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:FIRST GIVING PROCESSING FEE TOTAL FEES:-100 |
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| Software Version: |