Honoring the Past, Building on the Present, Innovating for the Future
OUR MISSION
The Pulmonary Fibrosis Foundation is committed to accelerating research, empowering our community, and transforming care so that everyone with pulmonary fibrosis can live a better life. Our ultimate goal is to find a cure for pulmonary fibrosis.
The Pulmonary Fibrosis Foundation rates among top charities in the U.S. The PFF has a four-star rating from Charity Navigator and is an accredited charity by the Better Business Bureau (BBB) Wise Giving Alliance. The Foundation has met all of the requirements of the National Health Council Standards of Excellence Certification Program®, and has earned the Candid Platinum Seal of Transparency.
Breathe Bulletin is published annually by the Pulmonary Fibrosis Foundation. Opinions expressed by the authors and interviewees are their own and do not necessarily reflect the policies of the Pulmonary Fibrosis Foundation.
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Letter from Our President and CEO
DEAR FRIENDS,
Welcome to the 25th anniversary issue of the Breathe Bulletin!
On behalf of everyone at the Pulmonary Fibrosis Foundation (PFF), thank you for being an essential part of the pulmonary fibrosis (PF) community . Your support, strength, and commitment continue to drive our mission forward .
Twenty-five years ago, Albert Rose and Michael Rosenzweig founded the PFF in memory of their beloved sister, Claire, who lost her life to idiopathic pulmonary fibrosis. Their vision was to create an organization dedicated to advancing research, improving care, and providing unwavering support to all those affected by PF. Tragically, both Albert and Michael were later diagnosed with the same disease. Yet their legacy lives on—fueling the Foundation’s work and inspiring the entire PF community. Since our founding, the PFF has grown into a trusted, nationwide resource for patients, caregivers, healthcare providers, and researchers.
Together, we have:
• Established a Support Group Network with more than 135 locations across the country
• Developed the PFF Registry, accelerating scientific discovery through robust data, biosamples, and imaging collection
• Organized a biennial conference, the PFF Summit, that brings together patients, caregivers, researchers, healthcare professionals, and industry leaders to advance collaboration and accelerate progress
• Built a Care Center Network of over 85 sites offering expert, multidisciplinary care
• Supported the next generation of PF researchers through the PFF Scholars program, providing earlycareer scientists with funding and mentorship to advance innovative PF research . The PFF has invested $7 million in research awards, with those awardees receiving additional funding from other sources totaling $306 million .
• Launched impactful national events like Broadway Belts for PFF! and the PFF Walk
Every milestone reflects our shared determination to improve lives and bring hope to families facing pulmonary fibrosis and interstitial lung disease (ILD).
As we celebrate 25 years of progress , we also look ahead. More than 250,000 Americans are currently living with PF and ILD — and far too many are still unaware of the support and resources available to them. Closing that gap is at the heart of our work. We invite you to continue this journey with us: spread the word, connect others to our community, and help ensure that no one faces PF alone.
Together, we are stronger. Together, we will find a cure.
With gratitude,
Scott Staszak PRESIDENT AND CHIEF EXECUTIVE OFFICER
Celebrating 25 Years of Progress
For 25 years, the Pulmonary Fibrosis Foundation has led the way in support, research, and education for those living with pulmonary fibrosis and interstitial lung disease.
Thanks to dedicated patients, caregivers, researchers, and supporters, we’ve seen incredible advances in science, increased awareness, and a growing number of clinical trials bringing us closer to new treatments - and ultimately, a cure.
But this milestone is about more than research. It’s about connection, hope, and a shared commitment to improving lives.
As we look to the future, our determination has never been stronger. We won’t stop until we find a cure.
Visit our timeline to see our progress over the past 25 years.
We’re Gearing Up in Chicago for the 8th PFF Summit
As the Pulmonary Fibrosis Foundation celebrates a milestone 25 years of funding groundbreaking research, uniting patients and professionals, and lighting the path toward a cure, it also prepares for its 8th highly anticipated PFF Summit conference . Set to take place in Chicago from November 13-15, the Summit underscores the Foundation’s enduring legacy and future ambitions .
A Full-Circle Moment: Back To Where It All Began
Since its inaugural gathering in Chicago in 2011, the PFF Summit has grown from a small but passionate meeting into the largest international conference dedicated to pulmonary fibrosis. What began as an ambitious effort to bring together patients, caregivers, and experts has blossomed into a dynamic, multidisciplinary event that attracts nearly a thousand attendees from around the globe. Each Summit builds on the last, expanding its reach, elevating its programming, and deepening its impact. As we return to Chicago in 2025, the growth of the Summit is a powerful reflection of how far the PF community—and the Pulmonary Fibrosis Foundation—has come.
Sheraton Grand Chicago Riverwalk
There’s electric anticipation for the PFF Summit 2025, slated for November 13–15 at the Sheraton Grand Chicago Riverwalk. Nestled along the iconic Chicago River and steps from Michigan Avenue, Navy Pier, and Millennium Park, the venue offers not just a breathtaking backdrop—it embodies the Summit’s stature as the world’s largest conference on pulmonary fibrosis and interstitial lung disease.
The PFF Summit opens its doors for all who have been impacted by PF: people living with PF, caregivers, lung-transplant recipients, and even those who have lost loved ones—alongside physicians, nurses, allied health professionals, researchers, industry representatives, and advocates.
The full program is available online for easy desktop and mobile viewing.
The PFF Summit fosters a lively environment created for meaningful engagement, with curated sessions for a wide variety of attendees:
For healthcare professionals, you can earn CME/CE/MOC credits through our accrediting provider, Partners. This year, Partners designates this live activity for a maximum of 22.0 AMA PRA Category 1 Credit(s)™. Physicians, nurses, respiratory therapists, social workers, pharmacists, and industry participants can earn accredited credits by registering.
For patients and caregivers, dive in to new knowledge with sessions that cover your most frequently asked questions, such as PF 101, treatment options, living with and managing your disease, the newest research, and caregiver support.
In addition, the popular Clinical Trial Innovation Series makes another return to the Summit as a key program addition. In this two-part series, groundbreaking research takes the stage as industry representatives report on the latest findings in clinical trials.
Renowned Experts Take the Stage: Meet
the Keynote
Speakers
Karen Mancera-Cuevas, DrPH, MS, MPH, CHES will be speaking on Friday, November 14. The topic of her talk is “Building equitable clinical trials for all populations.”
James Fraser, PhD, will speak on Saturday, November 15. The topic of his talk will be “Unlocking the future: How Artificial Intelligence (AI) is transforming pre-clinical drug discovery.”
Learn more about the speakers and read their bios here .
Evening Events: Connections Over Cocktails & Cuisine
No conference is complete without unforgettable social events! Registration includes access to two can’t-miss networking and social opportunities .
At Thursday’s Welcome Reception & Poster
Presentation, you’ll enjoy complimentary hearty hors d’oeuvres and beverages as you mingle with researchers and exhibitors.
Researchers will be showcasing their posters where they can share their research with you. New this year, 10 researchers will be awarded prizes, and the evening will include an awards ceremony.
During Friday’s Dine & Delight Networking Night , you’ll be treated to a taste of Chicago entertainment and flavors, hosted by Broadway actress and PFF Board Member, Julie Halston! The dinner event is your chance to relax, connect, and celebrate with fellow attendees in a warm, welcoming setting for stories, laughter, and inspiration.
Sponsors and Exhbitors Making an Impact
We graciously thank each of our sponsors for contributing to successful PFF Summit 2025!
SILVER
The People Behind the Progress
For 25 years, volunteers have been at the heart of the Pulmonary Fibrosis Foundation, playing a pivotal role in advancing our mission and empowering those affected by pulmonary fibrosis. From raising awareness and providing critical support, to sharing their stories and helping shape the future of PF care, our volunteers have shown that dedication and community can make a lasting difference.
In 2014, the Foundation launched the PFF Ambassador Program to elevate the voices of those directly impacted by pulmonary fibrosis. Since its inception, 120 individuals—including patients, caregivers, lung transplant recipients, healthcare professionals, and those who have lost a loved one—have stepped forward to serve as passionate advocates for the PF community.
PFF Ambassadors share their experiences at support group meetings, educational forums, and national events. They serve on committees and focus groups, offering essential perspectives to shape research, outreach, and patient education. Their message is powerful: life after a diagnosis of pulmonary fibrosis can be filled with purpose, hope, and community.
To date, PFF Ambassadors have participated in over 600 events, including media opportunities, fundraising campaigns, and educational initiatives—demonstrating the impact of lived experience in the fight against PF.
Another valuable way PFF volunteers make an impact is by leading the PFF Support Group Leader Network . What began with a handful of groups in 2000 has grown into a vibrant network of over 135 active groups today. Held in-person, online, and in hybrid formats, these support groups provide a lifeline to patients and caregivers seeking community, knowledge, and encouragement.
With representation in 41 U .S . states and 6 countries, the Support Group Leader Network offers a place of understanding for people at all stages of their journey.
The PFF is continually inspired by the dedication of our volunteer community. Their voices, perspectives, and generosity shape everything we do—from offering a comforting presence at support groups to advocating for change on national stages. Their commitment brings heart and humanity to our mission.
We also take time to honor the memory of volunteers we’ve lost. Their impact continues to guide us—their stories, efforts, and spirit live on in the Foundation’s mission and in the lives of those they touched.
I feel it is incumbent on all of us to try and help others on this journey. I want to help others, just as I have been helped.”
– Linda Dominy, PFF Ambassador
No one should feel like they are on this journey alone. Volunteering with the PFF augments the outreach and capability of the PFF. It makes each volunteer a part of the solution.”
– Sam Kirton, PFF Ambassador Emeritus, Support Group Leader
I love interacting with the patients and being an advocate for every patient and family member that I get to meet.”
– Heather Whitt, BSN, RN, Support Group Leader
Your investment of time is a gift of love and will be used in someone else’s journey to help them find strength to face and fight back against PF.”
– Tim Cox, PFF Ambassador, Support Group Leader
Being an ambassador gave me my purpose back. At a time when I felt alone, I felt proud and honored to belong to such an amazing group of fighters!”
– Dionn Tunis, PFF Ambassador
I wanted to spread awareness and give factual information so newly diagnosed patients would feel empowered with the right information. That they too would have a sense of hope and confidence to manage this disease.”
– Sandy Koenig, PFF Ambassador
We are also grateful to the many individuals, corporations, and foundations who support our mission—often because they or someone they love has been impacted by pulmonary fibrosis.
As we reflect on 25 years of progress, we know we didn’t get here alone. Our volunteers have shown up with time, energy, and heart—helping others, sharing their stories, and building connections that keep the community strong. Moving forward, it’s going to take all of us, together, to make sure everyone affected by PF has access to the care, support, and hope they need—and to continue our quest for a cure.
To every volunteer, past and present – thank you. We simply can’t say it enough.
Volunteer programs like the PFF Ambassador Program and the PFF Support Group Leader Network are made possible through the generous support of sponsors:
A New Era of Hope in Pulmonary Fibrosis Research
Research on pulmonary fibrosis has seen significant progress over the last decade, driven by the collaborative efforts of scientists, patients, and organizations like the Pulmonary Fibrosis Foundation . As the PFF’s Chief Medical Officer, Amy Hajari Case, MD, has had a unique perspective on this research progress. Dr. Case’s involvement with the PFF began in 2011 as a health care provider at Piedmont Healthcare in Atlanta. She utilized the organization’s resources for patient and support group connections. Piedmont Healthcare became a PFF Care Center in 2014, strengthening her relationship with the Foundation through various working groups and committees. In 2020, she formally joined the medical team to focus on education and awareness, working on new educational materials, webinars, and other programs. Earlier this year, Dr. Case took on the role of Chief Medical Officer at the PFF.
Dr. Case believes that one of the most notable things in research right now is the growing interest from the biomedical industry in pulmonary fibrosis — a direct result of a decade of expanding scientific understanding since the first two FDA-approved anti-fibrotic therapies emerged in 2014. “There’s a lot of work in trying to bring novel agents and tackle novel pathways in the disease,” Dr. Case said.
“Researchers now have a better grasp of the biochemical pathways that lead to fibrosis, enabling them to find new ways to interrupt the process. The sheer volume of therapies currently in the development pipeline is remarkable,” she said.
Additional research priorities include developing medications to provide symptom relief and using input from patients about their day-to-day challenges in managing the disease.
Here are three promising research efforts that offer new insights and hope for the PF community.
Researchers now have a better grasp of the biochemical pathways that lead to fibrosis, enabling them to find new ways to interrupt the process. The sheer volume of therapies currently in the development pipeline is remarkable.”
– Amy Hajari Case, PFF Chief Medical Officer
A Major Breakthrough For Nerandomilast
For the first time in more than a decade, a new treatment is now approved for IPF .
On October 7, 2025, the U.S. Food and Drug Administration approved Boehringer Ingelheim’s nerandomilast (Jascayd) for the treatment of IPF. Nerandomilast, an oral phosphodiesterase 4B (PDE4B) inhibitor, demonstrated statistically significant efficacy in slowing the rate of lung function decline among participants in the Phase III FIBRONEER-IPF clinical trial. Data from the positive phase III FIBRONEER-ILD trial of nerandomilast in progressive pulmonary fibrosis is expected to be reviewed by the FDA in the coming months.
“This is remarkable because it’s now well over a decade since we’ve had a significant phase three success in treating fibrotic ILD,” Dr. Case said.
This approval represents an important milestone for patients, caregivers, and clinicians, offering new possibilities in the care and management of pulmonary fibrosis, and helping to close the gap on unmet needs for patients living with IPF. Yet, the burden of this disease remains profound, and the need for additional effective treatments continues.
The Pulmonary Fibrosis Foundation remains steadfast in its commitment to advancing research, expanding education, and providing essential support to patients and their families.
Together with our partners across the scientific and patient communities, we will continue working toward improved outcomes and, ultimately, a cure for pulmonary fibrosis.
Improvements in Symptom-Specific Therapies
While new anti-fibrotic therapies are vital, Dr. Case stressed that progress must also be measured by improvements in patients’ day-to-day lives. Current anti-fibrotic medications focus on slowing down worsening lung function but do not typically improve patients’ symptoms of living with pulmonary fibrosis. This makes the growing focus on symptom-specific therapies another crucial area of development.
In June 2025, Trevi Therapeutics announced positive results for its phase 2b study, CORAL. The clinical trial studied the safety and efficacy of the oral drug nalbuphine ER for the treatment of chronic cough in patients living with IPF. The CORAL trial met its primary endpoint, reducing the frequency of the number of participants’ coughs per hour. Trevi plans to initiate the next phase of this program, a phase 3 study, in the first half of 2026. “This addresses how people feel and that’s really important,” Dr. Case said.
Real-World Data from the PFF Registry Study
Beyond clinical trials, the PFF is using data to address the realworld needs of patients. A recent study published in the May 2025 issue of BMC Pulmonary Medicine used data from the PFF Registry to understand the lived experience of patients and their unmet needs. The study highlighted the challenges patients face with comorbidities, care coordination, and the burdens of symptoms and oxygen use. “I think we understand some of these things intuitively, but now we have some data to show that people need better access to disease-related education,” Dr. Case explained.
With so many developments underway, Dr. Case said the PFF’s role as a trusted source of information remains more important than ever in terms of being able to educate people about their diagnosis and about the trial opportunities that are available to them. The momentum in pulmonary fibrosis research is undeniable, and for the community, that means a future filled with more options and more hope.
Real Voices Fuel Real Progress in PF Research
Nearly a decade ago, the PFF launched an ambitious initiative to better understand pulmonary fibrosis through clinical data. That effort has since evolved into one of the most influential research resources in the study of PF and interstitial lung disease: the PFF Registry . This comprehensive platform includes two key databases—the PFF Patient Registry and the PFF Community Registry—each offering valuable insights from different perspectives.
Launched in 2016, the PFF Patient Registry marked a major advancement in PF and ILD research. Through 42 participating PFF Care Centers across the country, more than 2,000 patients contributed physician-reported clinical data, radiology scans, and biospecimens. This wealth of information has been critical in helping researchers identify patterns, monitor disease progression, and explore potential treatment strategies.
The Patient Registry is already driving real-world impact. Using biospecimens collected through the program, the Prognostic Lung Fibrosis Consortium (PROLIFIC)—a collaboration between the PFF, 12 industry partners, and a nonprofit organization—has developed and validated blood-based biomarker tests for PF.
In another milestone, the PRECISIONS clinical trial is harnessing Patient Registry data and biosamples to personalize treatment for idiopathic pulmonary fibrosis (IPF). It is the first clinical trial to apply precision medicine principles to the diagnosis and treatment of IPF—a monumental step forward for the entire field.
In 2022, the PFF expanded the Registry’s scope with the launch of the PFF Community Registry—an inclusive, patient-driven database open to anyone in the U.S. affected by PF or ILD. Unlike the Patient Registry, which relied on data from clinical centers, the Community Registry gathers direct input from patients, lung transplant recipients, caregivers, and biological family members, regardless of where they receive care.
“The Patient Registry gave us a strong foundation, and the Community Registry builds on that by capturing a fuller picture of life with PF and ILD,” says Jessica Shore, PhD, RN, Senior Vice President, Clinical Affairs and Quality, who oversees the Registry at the PFF. “This evolution helps ensure that research reflects the full diversity of patient experiences—inside and outside the clinic.”
With no enrollment cap, the Community Registry has quickly become the largest and most inclusive PF and ILD registry. As of July 2025, it includes 2,795 participants and continues to grow. Participants complete two online surveys each year, offering researchers a clearer view of the daily realities of living with PF and ILD—covering symptoms, quality of life, caregiver burden, and emotional health. It also amplifies underrepresented voices, such as bereaved caregivers, giving researchers a fuller picture of how these diseases affect families as well as individuals.
“The Community Registry allows us to reach beyond the typical center-based clinical trials,” says Dr. Amy Hajari Case, Chief Medical Officer of the PFF. “Participation is not limited by diagnosis or severity of illness, and people all over the U.S. can take part. By including caregivers and family members, we can also better understand the ripple effect on loved ones.”
Notably, 92% of Community Registry participants have agreed to be contacted for future research studies. This creates a ready, responsive community for researchers exploring new questions and innovations. The strength of the PFF Registry lies in its ability to evolve with science and with the PF and ILD community. Originally launched to collect clinical data, the PFF Registry has grown into a national, patientcentered research platform.
Thanks to the thousands of individuals and families who have generously shared their experiences, the PFF Registry will continue to uncover insights, inspire research, and bring us closer to a cure. To join the Registry, visit pffregistry.org.
The PFF Care Center Network Continues to Expand Its Reach
Since its inception in 2013, the Pulmonary Fibrosis Foundation’s Care Center Network (CCN) has grown from nine centers into a network of 86 sites, including 80 care centers and six clinical associate sites — with more to come.
Care Center
Clinical Associate
The CCN champions multidisciplinary care by bringing together a diverse team of specialists, including pulmonologists, rheumatologists, cardiologists, pulmonary hypertension specialists, lung transplant teams, and palliative care providers.
Our goal is to leverage the success that we’ve had thus far and expand our network.
– Sonye Danoff, MD, PhD, Senior Medical Advisor of the PFF Care Center Network
“Our goal is to leverage the success that we’ve had thus far and expand our network,” said Sonye Danoff, MD, PhD, Senior Medical Advisor of the PFF Care Center Network and a Professor in the Division of Pulmonary and Critical Care Medicine and Co-Director of the Interstitial Lung Disease Clinic at Johns Hopkins Medicine. Johns Hopkins, a long-standing partner of the PFF, joined the CCN in its second round of recruitment and has contributed significantly to its impact.
A Focus on Access and Growth
“Eighty-six centers are not enough to touch all of the patients who have interstitial lung disease (ILD) and pulmonary fibrosis across the United States,” Danoff said. “The PFF aims to have representation in every state, with some states having multiple centers to serve larger populations.”
Working groups consisting of CCN members are also addressing emerging needs among specific populations.
The Rural Health Outreach Committee, for example, is exploring ways to optimize telemedicine for patients who live in lesspopulated areas. “We’re working very, very hard to understand how we can best deliver care to our rural patients,” said Danoff.
Another group is focused on familial pulmonary fibrosis, a genetic condition where at least two family members are diagnosed with pulmonary fibrosis. “This is something that people are increasingly recognizing, and they’re asking us to help guide them on how these patients need to be evaluated and what other special issues need to be considered,” Danoff said.
Ensuring that new pulmonologists and those in training are up-to-date on the latest research on pulmonary fibrosis and best practices when it comes to evaluating patients with interstitial lung disease is the goal of another key working group.
Partnering With the VA
The PFF has a very active collaboration with the Veterans Administration Medical Center (VAMC) to engage with veterans.
There is evidence that the prevalence of pulmonary fibrosis is likely higher in the VA population due to the age and sex of veterans (older age, more likely male) and higher rates of tobacco exposure than the general population.
“One of the reasons we are particularly focusing on the veteran population in addition to the higher prevalence, is that all veterans can get their healthcare through a single healthcare provider,” Danoff said.
“While I would not expect to have the whole VAMC as a CCN site, many of our CCN sites do have associated VA hospitals. So, we are working to engage those sites in a kind of ‘hub-and-spoke’ model.
The CCN site is the hub, and the VA hospital is a spoke from that hub which allows the sites to work together and share resources to provide optimal care for veterans living with PF/ILD who might not otherwise be seen at a CCN site. This model gives veterans living with pulmonary fibrosis and ILD access to clinical trials and research, which will ultimately bring us toward a cure,” Danoff said.
Nurses and Allied Health Professionals
A crucial component of the CCN’s success is the Nurse and Allied Health Network (NAHN). This vital group is comprised of physician assistants, nurse practitioners, nurses, respiratory therapists, social workers, and psychologists—anyone who touches the life of a patient with ILD.
This network facilitates education, mentorship, and collaborative research, ensuring that these caregivers are equipped to support patients in all aspects of their journey, from navigating oxygen use to participating in clinical trials. Danoff said that these are the professionals who have the most consistent interaction with patients.
The commitment to this integrated approach, from specialized care teams to the broader network, is a testament to the mission of the CCN, said Danoff. “The PFF Care Center Network really is the embodiment of the reality that we can bring together people from across the country and work in a coordinated fashion to both improve patient care as well as to move research forward, which will ultimately bring us toward a cure for pulmonary fibrosis.”
Thank you to the PFF Care Center Network sponsors.
Meet the Newest Class of PFF Scholars
The Pulmonary Fibrosis Foundation is helping to shape the future of PF research through its PFF Scholars program .
This year, six promising early-career scientists have each been awarded $100,000 to study pulmonary fibrosis. These grants are designed to jumpstart their research careers, giving them the support they need to compete for even larger grants in the future and to stay focused on PF for the long term. By investing in these rising stars, the PFF is building a pipeline of dedicated researchers who will keep exploring new ways to understand, treat, and ultimately cure pulmonary fibrosis for years to come.
KRISTIN BERGER, MD
Weill Cornell Medical College
Proposal Title: Associations of CTAssessed Airway Diameter and Clinical Outcomes in Pulmonary Fibrosis
This proposal is funded by Boehringer Ingelheim Pharmaceuticals, Inc.
Dr. Kristin Berger is an Instructor in the Division of Pulmonary and Critical Care Medicine at Weill Cornell Medical College. She completed her undergraduate studies in Biology through the Honors Program at Susquehanna University, where she also pole vaulted as a member of the track and field team. She then received her MD at the Penn State College of Medicine. She underwent internal medicine residency training at the University of Pittsburgh Medical Center followed by fellowship training at NewYork-Presbyterian/Weill Cornell, where she also received her master’s degree in clinical and translational investigation supported by the NHLBI T32. She has clinical interests in outpatient management of interstitial lung disease patients and critical care medicine. Dr. Berger’s research interest involves early identification and prognostication of interstitial lung disease, and she is currently investigating radiographic biomarkers of disease.
SARAH L. KHAN, MD, MHS
Johns Hopkins University School of Medicine
Proposal Title: Pulmonary Hypertension Prediction in Patients with Interstitial Lung Disease
This proposal is funded by the Hastings Foundation.
Dr. Sarah Khan is a Pulmonary and Critical Care fellow at the Johns Hopkins University School of Medicine. She completed her medical degree at Drexel University in Philadelphia followed by internal medicine residency and chief residency at Boston University Medical Center. During her fellowship, she has conducted research on radiographic phenotypes of interstitial lung disease-associated pulmonary hypertension and obtained a master’s in health science and clinical investigation from the Bloomberg School of Public Health. For her current proposal, Dr. Khan will use changes in radiographic and physiologic parameters over time to predict which patients with interstitial lung disease are at the highest risk of developing pulmonary hypertension. Her overarching goal is to generate evidence to inform standards of care for diagnosing and managing pulmonary hypertension related to interstitial lung disease and ultimately improve outcomes for affected patients.
One-quarter to half of all patients with interstitial lung disease have comorbid pulmonary hypertension (PH). Patients with ILD and PH (PH-ILD) have worse symptoms, more functional limitations, and
poorer survival compared to those without PH. Despite the high prevalence and serious implications of PH, there are currently no guidelines to recommend when, how often, and with which tests ILD patients should be screened. Current screening practices for PH-ILD vary widely among ILD providers, so there is a dire need for clinical guidelines. We propose that we may be able to combine two clinical measures which were found to be predictors of PH in patients with scleroderma to identify which ILD patients at risk for PH and should, therefore, be targeted for screening. The first of these potential predictors is based on changes in pulmonary function testing (PFT). The second potential predictor is the extent of lung involvement seen on chest computed tomography (CT). We hypothesize that ILD patients’ risk for PH can be predicted based on their chest CTs and changes in their PFTs over time.
Apply now! Letters of Intent (LOIs) for the new class of PFF Scholars will be accepted through Monday, December 1, 2025 at 5:00 pm Eastern Time.
The PFF will award between 4-5 new Scholars in the 2026 cycle each for $100,000 over a two-year period. All LOIs must be submitted through the online platform ProposalCentral. The program guidelines are available on that application platform or on our website. Please reach out to Zoe Bubany with any additional questions you may have.
XUE LIU, PHD
Cedars Sinai
Proposal Title: Regulation of HER2 Activation in Fibroblast Invasion and Pulmonary Fibrosis
This proposal is funded by the Hastings Foundation.
Dr. Liu’s research focuses on the cellular and molecular changes involved in the pathogenesis of Idiopathic Pulmonary Fibrosis (IPF). Utilizing cutting-edge approaches such as single cell multiomics analyses and rodent animal models, his work aims to investigate the mechanisms driving the invasive fibroblast phenotype in pulmonary fibrosis and to explore the dysregulated genetic programs and niches of alveolar progenitor cells in aging and IPF.
SCOTT M. MATSON, MD
University of Kansas
PProposal Title: Metabolomics of preclinical pulmonary fibrosis
This proposal is funded by the Johanneson Family.
Scott M. Matson, MD is an Assistant Professor of Medicine in the division of Pulmonary, Critical Care and Sleep at the University of Kansas. He sees patients in the Interstitial Lung Disease and Rare Lung Disease clinic at KU and attends in the medical intensive care unit while serving as Associate Program Director for the fellowship where he directs the fellowship research program. He is a clinician-scientist focused on translational research in interstitial lung diseases using multi-omics techniques to identify risk factors and biomarkers for ILD development, progression, and treatment prediction.
ABRAHAM (SCOTT) MCCALL,
MD, PHD
Vanderbilt University Medical Center
Proposal Title: HIF2 modulation of alveolar repair in pulmonary fibrosis
This proposal is funded by Boehringer Ingelheim Pharmaceuticals, Inc.
Dr. A. Scott McCall is an Instructor in the Division of Allergy, Pulmonary and Critical Care Medicine at Vanderbilt University Medical Center. He completed his undergraduate work at Kansas State University then attended Vanderbilt University School of Medicine for his MD and PhD in Pharmacology. He was clinically trained in Internal Medicine then a Pulmonary and Critical Care Fellowship at Vanderbilt University Medical Center where he has joined faculty as a physician-scientist. Much of his research has been driven by IPF transcriptional data and patient-derived organoids to understand the injury repair process and stem-cell function in the lung. By modifying the underlying injury-repair processes, his goal is to bring patient-tailored therapies to the bedside by developing new and innovative therapeutic solutions and repurposing existing compounds to treat fibrotic lung disease.
JEFFREY STUREK, MD, PHD
University of Kansas
Proposal Title: The Role of B-1 Cells and IgM in Pulmonary Fibrosis Pathogenesis
This proposal was funded by the Buckeye Foundation, the Chuck and Monica McQuaid Family Foundation, and the Jenny H. Krauss and Otto F. Krauss Charitable Foundation Trust, in memory of Stephen N. Dirks.
I am a physician-scientist with a research program focused on translational pulmonary immunology. I grew up in Columbia, Missouri and attended undergraduate school at Augustana College in Rock Island, Illinois. I pursued my M.D. and Ph.D. degrees through the Medical Scientist Training Program at the University of Virginia (UVA). I followed this with residency and chief residency in Internal Medicine, and fellowship in Pulmonary and Critical Care Medicine, all at UVA. During the research phase of my fellowship, I gained experience in B cell immunology and translational research methods. In 2019 I came on faculty and was selected as an invited scholar in the Integrated Translational Health Research Institute of Virginia (iTHRIV) Scholars Program, a two-year career development program focused on early career translational health researchers. My clinical focus is on immune-mediated and scaring lung diseases, including interstitial lung disease. My research spans the range of the translational spectrum from clinical to basic laboratory work to understand lung injury and repair. As a dual-trained physician scientist, I feel it is my calling to work at this interface. Outside of the hospital I enjoy staying physically active and spending time with my wife and three children.
Step by Step the PFF Walk Becomes a National Movement for Hope
Since its debut in 2017 along Chicago’s scenic lakefront, the Pulmonary Fibrosis Foundation’s Walk has evolved into much more than a fundraising event—it’s become a beloved tradition and a powerful symbol of community, resilience, and hope .
What began as a single gathering in one city has grown into a national movement, offering thousands the chance to walk in solidarity, honor loved ones, and take important steps toward a cure.
“People are happy to be outside together enjoying what is usually a beautiful day in the park,” says Andrea Young, who co-leads the Walk. “I can see how much comfort and support the Foundation provides to people.”
Chicago 2017
National Walk Day participant Britani Black of Huntington, West Virginia, said, “After losing my grandad to this disease, the PFF Walk means a lot to me and my family.”
The response to that first Chicago Walk was overwhelming, sparking a wave of enthusiasm that soon spread nationwide. The PFF Walk expanded to five additional regions of the country— New York City Metro, the Bay Area, Washington, D.C., Pittsburgh, and Dallas. Since its inception, the Walk has raised more than $6 million to support research, advocacy, and patient resources for those affected.
Today, the PFF Walk reaches well beyond its six regional sites. National Walk Day invites participants from across the country to walk in their own neighborhoods, parks, or trails—bringing the spirit of the event to communities of every size.
In 2024, the Walk program reached new heights with a record-breaking $1.2 million raised and nearly 2,800 participants nationwide.
NYC Metro 2019
Bay Area 2024
Pittsburgh 2023
As momentum builds, the Walk is also expanding to a new city in 2026—Tampa—extending the reach of the program and welcoming even more people into the growing PF community.
The PFF Walk goes virtual in 2020!
“The PFF Walk is a signature event that really unifies our community. We love seeing teams returning year after year as new participants continue to join the program,” says Kelly Lynch, who co-leads the Walk with Andrea. As pulmonary fibrosis remains a serious and debilitating disease, events like the PFF Walk play a critical role in raising awareness, building connections, and funding life-changing research.
“I’m one of the lucky ones, but too many people are still fighting for their lives,” said lung transplant recipient, John Bishop. His team, Team Bishop, has raised over $97,000 since they first participated in the NYC Metro Walk in 2022. “We need a cure to give everyone the chance to breathe freely and live fully.”
Looking ahead, the Foundation is preparing to celebrate the 10-year anniversary of the PFF Walk in 2026. It will be a moment to reflect on how far the community has come and how much more can be accomplished together.
The anniversary offers not only a chance to honor the progress made, but to recommit to the mission and renew the energy behind every step.
Whether participants gather in a major city or take a solo stroll through their neighborhood, each walker, each team, and each dollar raised brings us closer to a world without pulmonary fibrosis.
Dallas 2022
Team PFF: How you can bring awareness closer to home
Turn your passion into action with Team PFF! This fun and impactful program is spearheaded by outstanding volunteers who actively fundraise, promote awareness, and host their own events in their community . Members of our community have held several different types of fundraisers, and in the past five years, Team PFF Leaders have raised over $1 . 1 million for the PFF . This critical funding helps the Foundation raise awareness and strengthen our programming for people everywhere who have been who have been impacted by PF .
Over the past five years, we have seen multiple different types of a huge variety of unique fundraising events, including endurance challenges, competitive races, concert events, golf outings, bowling outings, movie nights, dinner parties, garden tours, art sales, scrapbooking, and more.
Lawlapalooza unites community through rock ‘n’ roll In 2024, fundraising and awareness for pulmonary fibrosis took the stage! Brothers Greg and Tom Jones, along with their “band of lawyers,” organized a charity concert called Lawlapalooza to support the Pulmonary Fibrosis Foundation. They decided to support the PFF because Greg and Tom’s mother and grandfather were diagnosed with pulmonary fibrosis and, unfortunately, have both succumbed to the disease. Lawlapalooza successfully raised over $20,000 for the pulmonary fibrosis community to support programming and finding a cure for PF!
How to get started with your own Team PFF event
Turn your passions and interests into a unique fundraising campaign and be a part of a committed group of volunteers across the country. If you’d like to join Team PFF and lead the way to finding a cure for pulmonary fibrosis, please contact Alyssa Athens and Jake Meding at teampff@pulmonaryfibrosis.org.
Community Walks Make Powerful Strides Across The Nation
Did you know that all of our official PFF Walks, with the exception of Chicago, were originally volunteer-led PFF Community Walks? Dallas, the Bay Area, Pittsburgh, Washington D .C . , and New York City all began as independent events organized entirely by the PF community .
That’s the power of a PFF Community Walk. And you can start the next one!
Hosting a community walk event allows you to bring your local PF community together and support the Pulmonary Fibrosis Foundation by fundraising and building awareness. Dozens of Community Walks are hosted all throughout the country, from Tampa to Seattle, and everywhere in between. All community walks support the PFF’s mission to raise awareness, accelerate research, and provide impactful programs. In 2026, we’re proud to announce that the Tampa Community Walk will become an official PFF Walk site! Please join us in welcoming the PFF Walk Tampa to the 2026 lineup.
How To Start
Get your hometown involved and expand the PFF’s footprint nationwide by hosting a walk in your community. Ready to start planning your walk? Our team is here to support you along the way. Please reach out to Alyssa Athens and Jake Meding at teampff@pulmonaryfibrosis.org.
Every Breath of the Way: A Look Back at Pulmonary Fibrosis
Awareness Month
This September, the Pulmonary Fibrosis Foundation invited the community to come together for Pulmonary Fibrosis Awareness Month under the theme “Every Breath of the Way.” And what a month it was! All across the country, patients, families, healthcare professionals, and supporters helped shine a light on PF and our community.
Throughout the month, the PFF shared daily reels on Facebook and Instagram in our 30 Facts In 30 Days series, offering facts about pulmonary fibrosis. These videos helped thousands learn more about the disease in an interactive and engaging way. Each day also featured personal stories from our community in the Portraits of PF series. Patients, caregivers, and those who have lost loved ones told their stories, reminding us all that none of us walk this journey alone.
The movement even lit up the night with #BlueUp4PF! Landmarks and buildings around the nation shined blue for PF, creating a powerful visual reminder that our community stretches far and wide. From city skylines to hometown libraries, the blue lights served as beacons of hope and awareness.
And on September 10, we celebrated our fifth annual ILD Day—our most successful yet! This year’s event featured a special webinar hosted by Dr. Scott Matson of the University of Kansas, who guided us through an engaging discussion about genetics and pulmonary fibrosis. Hundreds tuned in to learn about the role our genes play in PF and what new discoveries might mean for the future of care.
Thanks to your support, this year’s PF Awareness Month reached more people than ever before. Together, we’re truly walking “Every breath of the way” alongside each other.
If you’re not already following us on social media, find us on Facebook , Instagram , and YouTube with the handle @pfforg, and sign up for our email list so you never miss a beat.
We can’t wait to see how much more we can accomplish together in the year ahead!
Ways to Get Involved
Together, we are making a difference . You can help the PF community and lead the way toward a world without pulmonary fibrosis by getting involved with the Foundation . Below are just some of the ways that you can make an impact . To learn more, visit pulmonaryfibrosis.org or call us at 844.TalkPFF (844 .825 .5733) .
ADVOCACY
With leadership and guidance from the Pulmonary Fibrosis Foundation, patients and supporters from across the country are playing a major role in driving federal policy outcomes. Together, we are on the path to finding a cure, and your support and advocacy is bringing us ever closer.
FUNDRAISE FOR TEAM PFF
ATTEND A VIRTUAL EVENT
Attending or supporting a virtual event is a great way to participate and learn more about the Foundation’s programs and services, to educate yourself and others about PF, and to connect with other PF advocates. Use our online event calendar—which is updated weekly—to locate an online event or find inspiration for creating one of your own. To find upcoming activities, visit our events calendar.
ENGAGE WITH US ON SOCIAL MEDIA
Follow us on Facebook, Instagram, Twitter, and LinkedIn to learn about the latest news, resources and information about the disease, upcoming events, and so much more. Our social media channels are updated daily, and you can help the PFF’s messages gain momentum throughout the web each time you like, comment on, and share the posts. Find us today on Facebook, Twitter, Instagram, and YouTube at @pfforg, and on LinkedIn at /pulmonaryfibrosisfoundation.
SHOP PFF
Shop PFF merchandise is an excellent conversation starter, perfect for handing out at awareness and fundraising events. From bracelets to t-shirts to mugs and more, Shop PFF has something for everyone. Visit Shop-PFF.com today.
Leadership
BOARD MEMBERS
Wayne T . Pan, MD, PhD, MBA
CHAIR
Patricia (Pat) Rosa, M . Ed .
VICE-CHAIR
Laurie L . Chandler
TREASURER
Martin Attwell
SECRETARY
Grant Ballantyne, CPA
Harold R . Collard, MD, MS
Terence F . Hales
Julie Halston
Jeff Harris
Susan S . Jacobs, RN, MS
Heather Kagel
Pankaj “PJ” Kamani
Devi Kumar-Nambiar, JD, MBA
David McNinch
William T . Schmidt
CHAIRMAN EMERITUS
George Eliades, PhD
Michael C . Henderson
Daniel M . Rose, MD
MEMBERS EMERITUS
Colleen Attwell
Joseph Borus, Esq .
Thomas E . Hales
Dave Steffy
Stephen A . Wald, PhD
RESEARCH REVIEW COMMITTEE
Mitchell Olman, MD CHAIR
Imre Noth, MD VICE CHAIR
Ayodeji Adegunsoye, MD
Zea Borok, MD
Sonye Danoff, MD, PhD
Joao A . de Andrade, MD
Wonder Drake, MD
Carol Feghali-Bostwick, PhD
Christine Garcia, MD, PhD
Marilyn Glassberg, MD
Melanie Koenigshoff, MD, PhD
Andy Limper, MD
PAST CHAIR
David A . Lynch, MB, BCh
Bethany Moore, PhD
PAST CHAIR
Maurico Rojas, MD
Mary Beth Scholand, MD
Jessica Shore, PhD, RN
Patricia J . Sime, MD
Mary Strek, MD
Paul Wolters, MD
MEDICAL ADVISORY BOARD
Andrew H . Limper, MD
Joseph A . Lasky, MD
Jesse Roman, MD
Michael F . Beers, MD
Timothy S . Blackwell, MD
Amy Hajari Case, MD
Sonye Danoff, MD, PhD
Kevin R . Flaherty, MD, MS
Christine Kim Garcia, MD, PhD
Marilyn Glassberg, MD
Susan S . Jacobs, RN, MS
Naftali Kaminski, MD
David W . Kamp, MD
Melanie Koeningshoff, MD
Martin Kolb, MD
Joyce Lee, MD
Kathleen O . Lindell, PhD, RN
James E . Loyd, MD
David A . Lynch, MB, BCh
Fernando J . Martinez, MD, MS
Imre Noth, MD
Ganesh Raghu, MD
Patricia J . Sime, MD
Charlie Strange III, MD
Janet Talbert, MS, CGC
Leadership
PFF TEAM OFFICERS
Scott Staszak
PRESIDENT AND CHIEF
EXECUTIVE OFFICER
Janet Bianchetta, CPA
CHIEF FINANCIAL OFFICER
Amy Hajari Case, MD, FCCP
CHIEF MEDICAL OFFICER
Kate Gates
CHIEF OPERATING OFFICER
Seth Klein
CHIEF DEVELOPMENT
OFFICER
STAFF
Zoë D . Bubany, MBA
VICE PRESIDENT, BOARD AND EXTERNAL RELATIONS
Amy Hajari Case, MD, FCCP
SENIOR MEDICAL ADVISOR, EDUCATION AND AWARENESS
Sonye Danoff, MD, PhD
SENIOR MEDICAL ADVISOR, PFF CARE CENTER
NETWORK
Kevin R . Flaherty, MD, MS
STEERING COMMITTEE
CHAIR, PFF CARE CENTER
NETWORK AND PFF REGISTRY
Joyce S . Lee, MD, MS
SENIOR MEDICAL ADVISOR, RESEARCH AND HEALTH
CARE QUALITY
Jennifer Mefford
VICE PRESIDENT, CORPORATE PARTNERSHIPS
Jessica Shore, PhD, RN
SENIOR VICE PRESIDENT, CLINICAL AFFAIRS AND QUALITY
Molly Abrams
Alyssa Athens
Courtney Biewald
Alvin Coleman
Diana DeRosa
Laura Devitt
Roberto Espino
Tamaris Jeune
Sarah Brandywine Johnson
Sheena Kelly
Mary Kiener
Anna LaValle
Jamie Lederer, MSN, CRNP
Kelly Lynch
Noah Marshall
Jake Meding
Kathleen Park
Diana Rincon
Chuck Rogers
Ingrid Schwab
Samantha Simmons
Jennifer Simokaitis
Leah Sorini
Meredith Taylor
Sean Thinnes
Aubrey Trecek
Amy Wardzala
Andrea Young
Returning for One Night Only!
Secure your seat to Broadway Belts for PFF! The magical evening returns for its 16th annual gala on March 9, at Sony Hall in New York City — and now streaming live! Hosted by the incomparable Julie Halston, this unforgettable night features dazzling performances from Broadway’s brightest stars to raise critical funds and awareness . Tickets are available now, and you won’t want to miss this inspiring celebration!
Can’t make it to the venue? To include all members of the PF community, we’re providing the unique opportunity to enjoy this once-in-a-lifetime Broadway show from the comfort of your home with a complimentary virtual ticket . Save the date and secure your spot today.
