Pulmonary Fibrosis Foundation

What it reported doing in 2024

Marketing: in early 2024, the marketing team took on a major re-design of the pff homepage to make it more welcoming to newly diagnosed patients and their families. Compared to 2023, the homepage's redesign project resulted in a 7.5% increase in visits, a 26% increase in page views, and a 16% increase in events (clicking a link, loading a page, watching a video, etc.). The marketing team also began to place a heavier emphasis on email marketing. Through email alone, there were 5,607 total clicks to the pff homepage. We also earned 12,192 new subscribers to our email list, bringing our total contact base to 64,872. Of those new subscribers, 2,300 joined during pfam, which was our highest month for new signups. Other months averaged anywhere from 600 new signups to 1,000. Social media was an impactful tool to reach current patients and families. Further, social media is the most powerful tool to reach patients and families who do not know about the pff. During the fiscal year, advertisements on social media reached 574,984 accounts. Our content was viewed on facebook and instagram more than 2,067,456 times. Further, the ads earned 45,121 clicks to the pff website. In early 2025, the foundation launched its 25-year anniversary campaign, 25 years together: honoring the past, building on the present, innovating for the future. This campaign began with a new logo that includes a memorial ribbon. Our community responded so positively to the ribbon that the marketing team will continue to use it for campaigns moving forward. Significant 25-year anniversary projects included a variety of professionally filmed videos, a special edition of the breathe bulletin, a 25-year anniversary theme for pfam, and an interactive timeline on our website. Finally, nine press releases through the fiscal year resulted in 75,310 views throughout various online media outlets. 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 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 2025 cycle. The pff also concluded a two-year special research grant that was awarded to two awardees who focused their research on familial pulmonary fibrosis. The familial pulmonary fibrosis research grant was funded entirely through the generous gift of a donor for a total of $500k. The pff also considers other smaller grants that fit the parameters of 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 80 care centers and 6 clini

Financial Efficiency

• Mission deployment rate: 56.4%; rating input score 56
• Program expense ratio: 67.1%; rating input score 67
• Fundraising efficiency: $6.98 raised per $1 spent on fundraising; rating input score 26; 26th percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.4%; rating input score 94; 24th percentile among comparable filings
• Pay-setting controls: 6 of 6 controls in place; rating input score 100
  • Compensation committee: Pass
  • Independent consultant: Pass
  • Other Form 990s reviewed: Pass
  • Written employment contract: Pass
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: Limited
• Grant itemization coverage: 96.7%; rating input score 97; 32nd percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 9 of 9 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 20.3%; rating input score 77; 77th percentile among comparable filings
• Total-asset coverage ratio: 2.37; rating input score 67; 67th percentile among comparable filings
• Liabilities to assets ratio: 0.21; rating input score 42; 42nd percentile among comparable filings
• Officer compensation ratio: 27.8%; rating input score 7; 7th percentile among comparable filings

Growth

• Program expense growth: 6% per year; rating input score 100; 45th percentile among comparable filings
• Revenue growth: 8.3% per year; rating input score 100; 61st percentile among comparable filings
• Asset growth: 11.6% per year; rating input score 100; 64th percentile among comparable filings