Attach to Form 990 or Form 990-EZ.
Information about Schedule A (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
| (i)Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 9 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 | ||||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2011 | (b) 2012 | (c) 2013 | (d) 2014 | (e) 2015 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any unusual grants.) .... | 2,571,108 | 3,493,808 | 5,343,299 | 1,278,122 | 5,558,537 | 18,244,874 |
| 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 | 2,571,108 | 3,493,808 | 5,343,299 | 1,278,122 | 5,558,537 | 18,244,874 |
| 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).. | 6,873,846 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 11,371,028 | |||||
Calendar year
(or fiscal year beginning in) ![]() |
(a) 2011 | (b) 2012 | (c) 2013 | (d) 2014 | (e) 2015 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 2,571,108 | 3,493,808 | 5,343,299 | 1,278,122 | 5,558,537 | 18,244,874 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 46,324 | 12,753 | 11,028 | 6,852 | 14,534 | 91,491 |
| 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.).. | 101 | 1,070 | 5,860 | 401 | 2,101 | 9,533 |
| 11 | Total support. Add lines 7 through 10. | 18,359,148 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2011 | (b) 2012 | (c) 2013 | (d) 2014 | (e) 2015 | (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) 2011 | (b) 2012 | (c) 2013 | (d) 2014 | (e) 2015 | (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) |
||||
| 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) |
||||
| 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 2015 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-2015 |
(iii) Distributable Amount for 2015 |
|
|---|---|---|---|---|
|
1
Distributable amount for 2015 from Section C, line 6 |
||||
|
2
Underdistributions, if any, for years prior to 2015 (reasonable cause required--see instructions) |
||||
| 3 Excess distributions carryover, if any, to 2015: | ||||
| a | ||||
| b | ||||
| c | ||||
| d From 2013....... | ||||
| e From 2014....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2015 distributable amount | ||||
|
i
Carryover from 2010 not applied (see instructions) |
||||
| j Remainder. Subtract lines 3g, 3h, and 3i from 3f. | ||||
| 4Distributions for 2015 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2015 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from 4. | ||||
|
5
Remaining underdistributions for years prior to 2015, if any. Subtract lines 3g and 4a from line 2 (if amount greater than zero, see instructions) |
||||
|
6
Remaining underdistributions for 2015. Subtract lines 3h and 4b from line 1 (if amount greater than zero, see instructions) |
||||
|
7 Excess distributions carryover to 2016. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a | ||||
| b | ||||
| c Excess from 2013....... | ||||
| d From 2014....... | ||||
| e From 2015....... | ||||
| 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 2011-2015 CORRESPOND TO THE 5 PRIOR TAX RETURNS FILED: 2011 = 2012 RETURN (12/31/2012 YEAR-END) 2012 = 2013 RETURN (12/31/2013 YEAR-END) 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) |
| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Information about Schedule O (Form 990 or 990-EZ) and its instructions is at| 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 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, all of which will be used to facilitate the development of effective therapies and provide researchers with data in order to address specific research questions and facilitate recruitment for clinical trials. This vital program has been partially funded, but additional funding will allow the PFF Patient Registry to expand beyond the currently funded level of 2,000 patients, providing more clinical data and expediting research. As of December 31, 2016, the PFF Patient Registry has activated 38 sites and enrolled 547 patients. To learn more about the PFF Patient Registry, please go to: http://bit.ly/pffregistry. CONTINUED FROM FORM 990, PART III, LINE 4B: 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 2015 were included on the 2014 Form 990.} CONTINUED FROM FORM 990, PART III, LINE 4C: provide patients with the tools necessary to live with the disease and improve their quality of life. The Foundations suite of printed educational materials for physicians, patients, and caregivers includes: the PFF Patient Information Guide, PFF Physician Notepad, PFF Disease Awareness Brochure, and PFF Disease Awareness Poster. The Pulmonary Fibrosis Foundations educational materials are distributed by the PFF Patient Communication Center and the Support Group Leader Network (see Support Group section). 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 attending and providing funding support for educational conferences. PFF Disease Education Webinar SeriesThe 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. Seven webinars were presented in fiscal year 2015-16 and all can be viewed on the PFF website at www.pulmonaryfibrosis.org/webinars. |
| 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. The PFF Care Center Network connects leading medical centers throughout the US that have expertise in treating fibrotic lung diseases. The institutions that comprise the network use a multidisciplinary approach to deliver comprehensive patient care. These specialized care teams 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, recommendations for continuing care, assistance in delivering essential social services, and the opportunity to participate in collaborative research. To learn more about the PFF Care Center Network or find a PFF Care Center please go to: http://bit.ly/pffccn. 2 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). We are developing this environment by directly funding research, promoting 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 PFF Research Advisory Committee administers the peer-reviewed process which funds four $50,000 grants per grant cycle. PFF also co-sponsors a research grant with the American Thoracic Society (ATS) and sponsors other smaller grants that fit the research guidelines. 3 Outreach and Awareness PFF Ambassador programThe 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. PFF Daughters programThe PFF acquired all rights to the Daughters of Pulmonary Fibrosis program from the Coalition for Pulmonary Fibrosis. The program was founded to expand awareness of pulmonary fibrosis via grassroots events and fundraisers across the nation to generate a broader understanding of the impact the disease has on those living with PF and their families. The Daughters program is now part of the PFFs signature programs. 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. Global Pulmonary Fibrosis Awareness MonthThe PF community unites during Global Pulmonary Fibrosis Awareness Month (September) as a collective voice to enhance disease awareness and provide outreach to those in need. During Global Pulmonary Fibrosis Awareness Month, the entire 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. 4 PFF Patient Communication Center (PCC) The PFF Patient Communication Center (PCC) serves as the central information hub for pulmonary fibrosis patients, caregivers, and health care professionals. The PCC staff answers questions and provides information that is tailored to individuals needs. Resources available to callers include: information about pulmonary fibrosis; how to find medical care, access to support services, obtain information about available treatments, and how to enroll in clinical trials; PFF patient education and advocacy materials; and information on PFF programs and services. 5 Support Groups: Support Group Leader NetworkThe PFF Support Group Leader Network provides a forum for PF support group leaders to connect, exchange ideas, and share best practices. The Leanne Storch Support Group Fund further enhances the support group experience and assists the needs of the Network by funding educational events, helping establish new groups, and supporting related activities. In fiscal year 2015-16, the PFF awarded 47 Leanne Storch Support Group Fund grants. Online Support Group CommunitiesOnline support groups 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. Visit http://www.pulmonaryfibrosis.org/life-with-pf/support-groups/online -support-communities to learn more. 6 Advocacy: In 2015, the PFF provided support for patients and caregivers to attend the Rally for Medical Research Capitol Hill Day. During this event, patients and caregivers met with members of Congress to discuss the needs of patients diagnosed with pulmonary fibrosis, the impact of the disease on their daily lives, their views on current treatment approaches. The PFF also empaneled a group of volunteers to gather information about the advocacy needs of the pulmonary fibrosis community and plan advocacy activities to occur in future years. |
| FORM 990, PART VI, SECTION A, LINE 2: | JOE BORUS, SECRETARY AND DANIEL ROSE, CEO HAVE A FAMILY RELATIONSHIP. THOMAS E. HALES, DIRECTOR AND TERENCE F. HALES, DIRECTOR HAVE A FAMILY RELATIONSHIP. |
| FORM 990, PART VI, SECTION B, LINE 11: | A COPY OF FORM 990 IS REVIEWED BY THE EXECUTIVE AND FINANCE COMMITTEES 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, LINE 15A: | The organization determines compensation on an annual basis for the Chief Executive Officer and Chief Operating Officer positions through the Executive Committee (which serves as the Compensation Committee), with the use of an independent compensation consultant, a compensation study and approval by the Executive Compensation Committee. The last compensation review was conducted in September 2015. An independent compensation consultant also conducted a compensation study for key employees in September 2015. |
| FORM 990, PART VI, SECTION B, LINE 15B: | THIS QUESTION IS ANSWERED NO BECAUSE THERE ARE NO OTHER OFFICERS OR KEY EMPLOYEES WHO RECEIVE COMPENSATION. |
| 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:CONSULTING TOTAL FEES:1091507 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:OUTSIDE SERVICES TOTAL FEES:271550 |
| FORM 990 PART IX LINE 11G | DESCRIPTION:PROCESSING FEES TOTAL FEES:41642 |
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