The Pulmonary Fibrosis Foundation (PFF) is marking a major milestone in 2025: 25 years of progress in improving the lives of those affected by pulmonary fibrosis (PF). Since its founding in 2000, PFF has become a leading voice in patient support, education, research funding, and advocacy.

This September we are also taking part in PFF’s Pulmonary Fibrosis Awareness Month (PFAM), which is held yearly. Through this campaign, the PFF aims to raise national awareness of pulmonary fibrosis, educate the public and healthcare professionals, amplify patient and caregiver voices, and inspire action through advocacy and fundraising efforts.

The burden of pulmonary fibrosis

Pulmonary fibrosis, a form of interstitial lung disease (ILD), is characterised by progressive scarring of the lung tissue. These irreversible changes impair gas exchange, leading to shortness of breath, particularly during exercise, and a reduced quality of life. Pulmonary fibrosis is a life-threatening condition with no cure at present. Currently treatment options slow, rather than reverse, the fibrotic process.

In the United States alone, more than 250,000 people live with pulmonary fibrosis or interstitial lung disease today. Each year, approximately 50,000 new cases are diagnosed. Idiopathic pulmonary fibrosis (IPF), the most common type of PF of unknown cause, is estimated to take roughly 40,000 American lives annually.

PFF’s mission and 25 years of progress

Since its inception, PFF has pursued a dual mission: to accelerate the development of new treatments (and ultimately a cure) for PF, and in the meantime to enhance care, education, and support for patients, caregivers and healthcare providers. Over the past 25 years, PFF has built a strong infrastructure for patient advocacy, impactful research, educational resources, and community engagement.

Since its establishment in 2000, PFF has reached numerous milestones, including the inaugural PFF Summit (2011), the launch of the PFF Scholars Program (2020), and the opening of the PFF community registry (2022). Most recently in 2025, PFF launched ‘PF basics’, an online resource for recently diagnosed patients, providing guidance on the steps to take after diagnosis.

Dr Patricia Sime (Virginia Commonwealth University) said “When I started taking care of patients with pulmonary fibrosis and doing research more than 20 years ago, we had no therapies for many of the patients with pulmonary fibrosis. We’ve been able to watch this evolve in front of our eyes. By coming together as a community, we can really make much faster progress. We make progress every day in the fight against pulmonary fibrosis. We’re working on identifying targets, developing therapies, having patients take part in clinical trials.”

Pulmonary Fibrosis Awareness Month (PFAM), held each September, is PFF’s flagship awareness campaign. This year’s theme, “Every breath of the way”, emphasises community among patients, families, caregivers, health professionals, researchers, and advocates.

The PFF Ambassadors also emphasize the importance of community, with Dot Ivey explaining “By being connected to other pulmonary fibrosis patients, I know I’m not alone“, while Sam Kirton agreed, “There are others out there. We connect together. We are stronger and you are not by yourself as you go through this journey.”

Key components of PFAM include:

• 30 facts in 30 days: Daily, medically-reviewed PF facts are shared on social media to educate the public about disease burden, diagnosis, care challenges, and research progress.
• Portraits of PF: Personal stories and photographs from people living with PF, caregivers, transplant recipients, healthcare providers, and those remembering loved ones. Such narratives aim to convey the human impact of the disease in ways that statistics alone cannot.
• Lung pose and #BlueUp4PF: These visual campaigns invite community members to use creative gestures (the “lung pose”) and to illuminate landmarks in blue light to drive visibility and solidarity.
• PFF walk: Fundraising and awareness walks, local and virtual, uniting the PF community to generate funds for research, care, and education while giving voice to those affected.

Looking Forward

Now celebrating its 25th anniversary year, the PFF continues to address key challenges in pulmonary fibrosis, including delayed diagnosis, limited treatment options, and disparities in access to specialized care. While much remains to be discovered about the mechanisms driving PF, the foundation’s achievements over the past quarter century provide both a strong foundation and a springboard for future progress. By investing in research, advocacy, education, and patient empowerment, the PFF is driving advances that bring hope for earlier detection, better therapies, and ultimately, a cure.

President and CEO of PPF, Scott Staszak explains “The PFF understands the deep responsibility that we have to the community we serve and we feel a great partnership with all of you. We envision a world in which no one is negatively impacted by pulmonary fibrosis. And we can only achieve that goal with engagement with everyone in our community. And we need you to help us. We will continue to fight this disease. And each day we will build a stronger community.”

Conclusion

Pulmonary Fibrosis Awareness Month offers an opportunity for clinicians, researchers, and respiratory healthcare providers around the world to reflect on the toll of PF, re-dedicate efforts to early diagnosis and patient care, and support the ongoing search for improved treatments and ultimately, a cure. The Pulmonary Fibrosis Foundation’s 25 years of work exemplify how a patient-centred organisation can influence not just lives, but the trajectory of a disease field. As the PF community raises its voice this September, there is reason both to honour what has been done, and to recommit to what yet must be done: ensuring that every breath, every person, truly matters.

References

1. Pulmonary Fibrosis Foundation. Available at: https://www.pulmonaryfibrosis.org/ (accessed 12 September 2025).
2. Pulmonary Fibrosis Foundation. PF Awareness Month. Available at: https://www.pulmonaryfibrosis.org/get-involved/volunteer/pf-awareness-month (accessed 12 September 2025).
3. Pulmonary Fibrosis Foundation. Our 25 year anniversary. Available at: https://www.pulmonaryfibrosis.org/about-us/who-we-are/25-year-anniversary (accessed 12 September 2025).
4. PR Newswire. Pulmonary Fibrosis Affects 250,000 Americans – September Sparks National Awareness. 2025. [Press release]. Available at: https://www.prnewswire.com/news-releases/pulmonary-fibrosis-affects-250-000-americans–september-sparks-national-awareness-302537857.html (accessed 12 September 2025).