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PULMONARY FIBROSIS FOUNDATION

SUMMER 2026

Today, not someday

Table of Contents Letter from Our President and CEO. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Something for Everyone: Find the Right Education Resource for You . . . . . . . . . . . . . . . . . . . . . . . . . . 6 How PFF Volunteers Take Action to Spread Awareness Today. . . . . . . 8 PFF Advocates Take Action to Push the SOAR Act Forward . . . . . . . . 12 3,000 Voices Strong: How the PFF Community Registry Is Shaping the Future of Pulmonary Fibrosis . . . . . . . . . . . . . . 16 PFF Care Center Network Welcomes 11 New Centers . . . . . . . . . . . . . 18 Meet the 2025 PFF Scholars. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 PFF and PHA Partner to Advance Research on Pulmonary Hypertension in ILD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 PRECISIONS Moves Pulmonary Fibrosis Research Toward More Personalized Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Learning From Each Other: An ILD Nurse Mentorship. . . . . . . . . . . . . . 28 PF and ILD Clinical Trial Pipeline Reaches a Turning Point. . . . . . . . . 32 A Record-Breaking Night and a New PFF Walk. . . . . . . . . . . . . . . . . . . . . 34 Missed the PFF Summit 2025? Watch the Sessions Today on YouTube. . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 We’re Headed to Bellevue, Washington in 2027!. . . . . . . . . . . . . . . . . . . 38 PFF Summit 2025 By the Numbers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39 Thank You to Our PFF Summit 2025 Sponsors. . . . . . . . . . . . . . . . . . . . . 40 A Legacy of Hope: Remembering an Anonymous Friend. . . . . . . . . . . 41 Expanding Our Reach, Strengthening Our Community. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42 PFF Expands Leadership and Welcomes New Board Members . . . . 44 Ways to Get Involved. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46 Leadership. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52 2

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. Select articles in this issue were developed with AI assistance. Prior to publishing, the PFF staff and medical team reviewed all articles for accuracy. D I S C L A IM ER The material contained in this newsletter is for educational purposes only and should not be considered as medical advice. Consult your healthcare provider for treatment options. © 2026 Pulmonary Fibrosis Foundation. All rights reserved. Pulmonary Fibrosis Foundation 223 W Jackson Blvd. Suite 350 Chicago Illinois 60606 pulmonaryfibrosis.org

844.TalkPFF (844.825.5733)

Letter from Our President and CEO DEAR FRIENDS,

For everyone affected by pulmonary fibrosis and interstitial lung disease, progress cannot wait for someday. It must begin today. That sense of urgency is at the heart of the Pulmonary Fibrosis Foundation’s new strategic plan, The PFF is Me, introduced to our community at the 2025 PFF Summit. The plan provides a clear path forward across our core pillars of research, patient support, education and advocacy, all working toward one goal: Helping people affected by PF and ILD live longer, healthier and more fulfilling lives. Everyday, we are turning that vision into action. The PFF Community Registry recently surpassed 3,000 participants, strengthening a powerful source of data that can help researchers better understand PF and ILD, and advance more personalized care. Our programs continue to connect patients, caregivers and families with trusted information and support. We are also expanding our reach, including the launch of a new PFF Walk in Tampa, which will bring another community together to raise awareness and fuel progress.

Our leadership is growing as well. We recently welcomed Dr. Bradford Bemiss and Dr. Krishna Thavarajah to the PFF Board of Directors. As nationally respected pulmonologists and ILD experts, they bring valuable clinical and research experience that will help guide our work and ensure the voices and needs of patients remain at the core of our decisions. None of this progress happens without you. Whether you participate in research, attend an event, share your story, advocate, volunteer or donate, your involvement moves this mission forward. We ask you to continue building this momentum with us so that everyone impacted by PF and ILD can live a better life, beginning today.

Scott Staszak President and CEO

Something for Everyone: Find the Right Education Resource for You A diagnosis of interstitial lung disease (ILD) or pulmonary fibrosis (PF) can bring many questions. Whether you are newly diagnosed, supporting a loved one, or looking to learn more about a specific topic, finding trustworthy information can help you feel more informed and prepared to navigate this journey. The Pulmonary Fibrosis Foundation offers a variety of educational resources designed to meet you where you are. Whether you prefer to read at your own pace, learn through interactive online modules, or hear directly from experts, there is something for everyone.

Need a guide by your side? Check out the PF Information Guide. The PFF’s Pulmonary Fibrosis Information Guide is a comprehensive booklet that is available as a digital download or a hard copy that can be ordered through the PFF Help Center. The guide covers important topics including understanding PF, managing symptoms, treatment options, oxygen therapy, clinical trials, and more. Keep it as a resource to return to as new questions arise throughout your PF journey. 6

Newly diagnosed? Start with the basics. PF Basics is an online, module-based learning program created with newly diagnosed patients and caregivers in mind. The program breaks down key information into manageable lessons, helping you build a foundation of knowledge about ILD and PF and the many aspects of living with the disease. You can work through the modules at your own pace and revisit them whenever you need a refresher.

Prefer a video? Tune in to the PFF Disease Education Webinar Series. These expert-led webinars explore a wide range of topics relevant to the PF and ILD community. From treatments and symptom management to research, genetics, oxygen, exercise, and other areas of interest, the series offers an opportunity to hear directly from experts and explore topics in greater depth. No matter where you are in your PF journey or how you prefer to learn, the PFF has educational resources to help you find the information you need. Start with the resource that feels right for you and come back to explore others as your questions and interests change. If you need assistance navigating the PFF’s resources, please contact the PFF Help Center at 844.TalkPFF (844.825.5733) or help@pulmonaryfibrosis.org.

How PFF Volunteers Take Action to Spread Awareness Today Volunteers are essential to fulfilling our mission by translating awareness into meaningful action. Volunteers extend our reach into communities, support groups, and conversations that we may not have entered on our own. By sharing their personal experiences, distributing educational information to those diagnosed with PF, and informing others of available resources, volunteers don’t just support the PFF’s goals, they carry them forward.

Support group leaders provide compassionate guidance to those navigating pulmonary fibrosis. A reliable, steady presence for patients, caregivers, family members, and friends, group leaders create a space where questions can be asked, decisions are discussed, and the ability to share honest thoughts are welcomed. With over 135 active support groups in the PFF’s network, support group leaders are a communication line from the Foundation to the broader PF and ILD community. Support group leaders actively ensure that those diagnosed with PF and ILD know that they are not alone. It is important for patients and care-givers to understand they have a group of peers to support them, a Foundation with information and resources to guide them, and a community of people to help them with what they need most. Not connected to a support group or looking for an additional group? Find a support group that’s right for you through the PFF’s Find a Support Group Search Tool and connect with others. The PFF Support Group Leader Network (SGLN) educates and connects support group leaders to exchange ideas, discuss best practices, and learn from one another. If there is no support group in your area, you can start one! The PFF will provide you with resources to guide you in developing and running your support group. We will assist you in promoting your group to PF community members and provide you with PFF educational materials to share with your group. 9

The PFF Ambassador Program encourages and empowers patients, caregivers, lung transplant recipients, family members, and those who have lost a loved one to serve as spokespeople for the PF and ILD community on behalf of the Foundation. PFF Ambassadors undergo formal training to prepare for speaking, advocating, and educating others about the support available to them through the PFF. In 2025, PFF Ambassadors engaged in 83 opportunities to share the impact of pulmonary fibrosis on one’s life and a message of hope and inspiration to those affected by PF and ILD.

Volunteers, like PFF Ambassadors and support group leaders, directly advance the Foundation’s mission of accelerating research, empowering our community, and transforming care so that everyone with PF can live a better life. They help drive our goals of strong patient support, a greater public understanding of this disease, and a future where no one facing pulmonary fibrosis feels alone. They take action today for themselves and the whole PF and ILD community.

Have you been thinking about donating your time and talents to help people who have been impacted by PF or ILD? Check out our 5 ideas to get you started!

PFF Advocates take action to push the SOAR Act forward

The Supplemental Oxygen Access Reform (SOAR) Act has surpassed 75 cosponsors in Congress, thanks to the hard work and persistence of many supplemental oxygen advocates! The SOAR Act will improve patients’ access to oxygen by changing the way that supplemental oxygen is covered for patients who have Medicare. All year, PFF Advocates have been meeting with their members of Congress, sending emails about the importance of the SOAR Act, and calling their congressional offices to remind them to keep the SOAR Act a priority. They are acting now to ensure all supplemental oxygen users have access to the oxygen equipment and services they need. PFF Advocates are dedicated to passing the SOAR Act this year!

The Foundation hosted two advocacy events this year that focused on encouraging legislators to cosponsor the SOAR Act: PFF Hill Day 2026 and PFF Fly-In Day 2026. Hosted in the spring each year, Hill Day participants meet virtually with congressional offices to voice the policy priorities of the PF and ILD community. PFF Hill Day 2026 was the largest yet with 123 meetings and 86 participants! There were 32 states represented at Hill Day on March 4. The congressional offices were receptive to our request to cosponsor the SOAR Act with 7 members that we met with signing on as cosponsors since Hill Day. In July, the PFF hosted a Fly-In Day to meet inperson with congressional offices on Capitol Hill. Sixteen PFF Advocates traveled to Washington D.C. from 13 different states. Advocates participated in 35 meetings with members of Congress and their staff. They urged Congress to pass the SOAR Act in 2026. During Fly-In Day, the PFF shared new survey data that shows patients are staying in hospitals because they cannot get adequate oxygen at home. The survey revealed that patients who could otherwise be at home are being kept in hospitals across the country because they cannot access the oxygen they need. This is the first survey to document the scope of the problem, which had previously only been reported anecdotally. In a survey of 54 respiratory clinicians, 94% of respondents reported hospital discharge delays occurring at least monthly due to home oxygen access issues. 13

This survey was led by the Pulmonary Hypertension Association. The PFF and other oxygen coalition members collected survey responses from clinicians in their networks. The scale of this problem is significant. clinicians reported that patients were 88% ofkept in the hospital 2 or more days due to oxygen access problems and

33%

reported 6 or more affected patients each month.

As one survey respondent stated, “The appearance of saving money without paying for liquid oxygen is false. Increased Emergency Care visits and hospitalizations are much more expensive.” Authors: C. Connor, S. Jacobs, K. Kroner, J. Wetherill, N. Kolaitis. Presented at the PHA 2026 International PH Conference and Scientific Sessions, Dallas, TX, June 11-14, 2026. The authors wish to acknowledge the Pulmonary Hypertension Association, American Lung Association, American Thoracic Society Oxygen Special Interest Group, Running on Air, and University of Pennsylvania Pulmonologists for their support.

We need your voice to ensure the passage of the SOAR Act! Take action today by calling and emailing your Senators and Representative with our advocacy alert and advocate for improved access to supplemental oxygen.

Thank you to our 2026 education and volunteer program sponsors. The PFF Ambassador Program, PFF Community Education Program, PFF Disease Education Webinar Series, and PFF Support Group Leader Network are funded through the generous support of corporations, foundations, and individuals who have been impacted by PF and ILD.

3,000 Voices Strong: How the PFF Community Registry Is Shaping the Future of Pulmonary Fibrosis

Every person living with pulmonary fibrosis has a story. It’s the story of the first symptoms that appeared, the appointments and tests, the adjustments to everyday life, and the determination to keep moving forward. Those stories matter not only to family, friends, and loved ones, but also to the researchers working tirelessly to improve treatments and one day find a cure. Today, more than 3,000 people have chosen to share their PF and ILD experiences through the PFF Community Registry. Together, these participants are helping build one of the most powerful databases for understanding these diseases and accelerating lifesaving research. Pulmonary fibrosis and interstitial lung diseases are complex. Researchers still have many unanswered questions about what causes them, why they progress differently from person to person, and which treatments work best for specific patients. By bringing together information from thousands of people, the Registry helps scientists identify patterns that may otherwise go unrecognized. 16

Launched in 2022, the PFF Community Registry is an online research study that collects information directly from people affected by PF and ILD. Unlike traditional studies that may require travel or in-person visits, the Registry can be completed at home through a secure, HIPAA-compliant online portal. Participants answer surveys about their health, diagnosis, treatments, daily experiences, environmental exposures, and quality of life. And it’s not just for patients. The Registry welcomes lung transplant recipients who have had PF or ILD, caregivers, and first-degree family members (including those whose loved ones have passed away). Every perspective adds another piece to the puzzle and helps researchers better understand how these diseases affect individuals and families over time. The Foundation has set an ambitious goal: growing the Registry to an additional 6,000 participants by 2030. Imagine the impact of 6,000 more voices. Imagine the discoveries that could come from a richer, more diverse understanding of life with PF. Every new participant strengthens the Registry and brings us one step closer to better treatments, improved care, and ultimately, a cure.

Today, 3,000 voices can begin growing into 6,000. Take the 1-minute questionnaire to find out if you’re eligible to enroll!

“Every person’s experience is valuable, and the more participants we have, the stronger the collective data,” Jessica Shore, PhD, RN, Chief Scientific Officer for the Pulmonary Fibrosis Foundation. 17

PFF Care Center Network welcomes 11 new sites The PFF is here to help connect you to medical teams experienced in diagnosing, treating, and managing PF and ILD. Through the PFF Care Center Network, patients can access expert care at locations across the country. Use our free and interactive Find Medical Care tool to enter your zip code and find the nearest Care Center location. This year, the Foundation expanded its reach by welcoming 11 new sites to the program. In total, the PFF Care Center Network now includes 96 sites across 40 states!

Thank you to our PFF Care Center Network Sponsors The PFF Care Center Network is funded through the generous support of corporations, foundations, and individuals who have been impacted by PF and ILD. Champion

Supporter

The 11 new medical sites are: • Intermountain Health Interstitial Lung Disease Clinic, Salt Lake City, Utah • Louisiana State University (LSU) Multidisciplinary ILD Program at University Medical Center, New Orleans, Louisiana • Mayo Clinic in Arizona, Phoenix and Scottsdale, Arizona • Mayo Clinic Florida, Jacksonville, Florida • Montefiore’s Advanced Pulmonary Failure and Lung Transplant Program, New York, New York • Mount Sinai Respiratory Institute, New York, New York • Ochsner Advanced Lung Disease Clinic, Kenner, Louisiana • St. Luke’s University Health Network, Bethlehem, Pennsylvania (transitioned from a Clinical Associate to a Care Center) • The Queen’s Health Systems, Honolulu, Hawaii (joined as a Clinical Associate site with UCSF as their Care Center partner) • University Hospitals Cleveland Medical Center Interstitial Lung Diseases Program, Cleveland, Ohio • University of Mississippi Medical Center Interstitial Lung Disease Program, Jackson, Mississippi

Find a care team today! Use our free and interactive Map to locate a PFF CCN site.

Meet the 2025 PFF Scholars: Five researchers seeking answers to the biggest questions in PF and ILD

Every breakthrough in pulmonary fibrosis begins with a question. Why do some people develop pulmonary fibrosis while others do not? Why does the disease progress quickly in some patients and remain stable in others? And how can we deliver more personalized, effective care? The PFF Scholars program was created to help answer these questions by investing in the next generation of scientific leaders. Each year, the Foundation awards promising early-career investigators up to $100,000 over two years, giving them the support, mentorship, and resources needed to pursue innovative research. This year’s class of PFF Scholars is tackling some of pulmonary fibrosis’ biggest challenges.

DANIEL GUIDOT, MD, MPH Understanding Barriers to PF Care Delivery to Design an Improved PF Treatment Approach Dr. Guidot is studying why some patients struggle to receive timely diagnosis and treatment, and how healthcare systems can better serve patients. Dr. Guidot wants to find solutions to make sure that where a person lives, their age, or their circumstances don’t stand in the way of receiving the best possible PF care.

JONATHAN CHANG, MD Modeling pulmonary fibrosis using patient-specific iPSCs carrying telomerase mutations Dr. Chang’s work focuses on helping physicians see pulmonary fibrosis more clearly and earlier. By improving how scans are interpreted, researchers hope to identify disease changes sooner and provide patients with more precise treatment plans.

ANTHONY J. ESPOSITO, MD Multimodal Machine Learning Modeling to Predict Outcomes from Systemic Sclerosis-Associated ILD Dr. Esposito is combining patient information, CT scans, and AI to predict how pulmonary fibrosis associated with scleroderma, a rare autoimmune disease, may progress.

ATSUSHI SUZUKI, MD, PHD Targeting Mitochondrial ETC Complex IV in Profibrotic Monocyte-Derived Alveolar Macrophages for the Treatment of Pulmonary Fibrosis Dr. Suzuki is studying immune cells called macrophages, which can sometimes contribute to lung scarring. Specifically, he is investigating how these cells generate energy and whether interrupting that process could slow or stop fibrosis.

JACK WELLMERLING, PHD Role of NFATs in driving pathologic fibroblast states Dr. Wellmerling is exploring the fundamental mechanisms that contribute to pulmonary fibrosis. His work focuses on uncovering how changes within lung cells influence the development of scar tissue and identifying new opportunities for intervention.

Donate today to the PFF Scholars fund!

As the Pulmonary Fibrosis Foundation continues to invest in emerging researchers, the entire PF community benefits. Because when we support the people asking tomorrow’s questions, we move one step closer to finding tomorrow’s answers.

New ILD-PH Research Award

PFF and PHA Partner to Advance Research on Pulmonary Hypertension in ILD The Pulmonary Fibrosis Foundation and Pulmonary Hypertension Association are joining forces to support research on pulmonary hypertension in people with interstitial lung disease (ILD-PH). Through a new two-year, $100,000 research award, the organizations will fund work aimed at improving how ILD-PH is understood, detected and treated. Pulmonary hypertension occurs when the blood pressure in the vessels between the heart and lungs becomes too high. When it develops in someone with ILD, it can increase the need for supplemental oxygen, limit everyday activities, and significantly affect quality of life. It is also associated with poorer outcomes, making earlier diagnosis and better treatment especially important. 24

Many questions about ILD-associated pulmonary hypertension remain unanswered. Researchers are still working to understand why it develops in some people and not others, how patients should be screened, and when more invasive testing, such as right-heart catheterization, is appropriate. Although one treatment is currently approved, more research is needed to determine whether other therapies may help and when treatment should begin. The new PFF/PHA Partner Research Award will support innovative studies that can move the field forward. Projects may explore the biology behind ILD-PH, identify new biomarkers, study genetic or clinical risk factors, improve ways to predict outcomes, or test potential treatment strategies. Applications will be evaluated through a peer-review process led by scientific experts. Funding decisions will be based on the quality, originality, and potential impact of the proposed research. By combining the expertise and resources of the PFF and PHA, the award aims to bring better answers and more options to people living with ILD-PH.

PRECISIONS Moves Pulmonary Fibrosis Research Toward More Personalized Care The right treatment for the right patient at the right time. This is the goal of precision medicine. People with the same pulmonary fibrosis or interstitial lung disease diagnosis can have very different experiences. Their disease may progress at different rates, and the same treatment may not work equally well for everyone. Funded by a $22 million grant from the National Institutes of Health and conducted in partnership with the PFF and the Three Lakes Foundation, the PRECISIONS study was created to better understand these differences and move research toward care informed by each person’s biology. PRECISIONS had three main aims. The first focused on treatment. Researchers studied whether N-acetylcysteine, or NAC, may help a specific group of people with idiopathic pulmonary fibrosis who 26

carry a particular genetic variant. This approach asks whether a genetic variant can help identify which patients are most likely to benefit from a treatment and whether that treatment can improve outcomes. The second aim explored biological clues across IPF and other forms of ILD. Researchers analyzed proteins, RNA, and other markers in blood samples to identify patterns and group patients with similar biological features. These classifications may eventually help researchers predict how a disease will progress, understand why people respond differently to treatments, and design more targeted clinical trials. The third aim focused on genetic risk. Researchers examined genetic variants that may affect a person’s chances of developing IPF or influence how the disease progresses. Similar approaches are already used in other areas of medicine. For example, some cancer treatments are selected based on biological markers found in a tumor. Similarly, the goal for PF and ILD is to better match care with the biology of each person’s disease.

The PFF Registry and PFF Care Center Network supported important parts of PRECISIONS by connecting researchers with clinical information and blood samples contributed by participants. While the findings are not yet ready to guide everyday treatment decisions, they are helping build a future in which care may be more informed, targeted, and personal.

Learning From Each Other: An ILD Nurse Mentorship The PFF’s Nurse and Allied Health Network (NAHN), a working group within the PFF Care Center Network, connects nurses, advanced practice providers, pharmacists, social workers, respiratory therapists, and other allied health professionals who care for people living with pulmonary fibrosis and interstitial lung disease. Members have the opportunity to network, participate in working groups and journal clubs, attend the PFF Summit, and share resources and best practices. The network’s newest working group brings together social workers from across the country to exchange insights and strengthen support for patients and families. Lori Flint

Cait Kinder 28

NAHN also recently launched a mentoring program. For Lori Flint, RN, of the Interstitial Lung Disease Clinic at Michigan Medicine, and Cait Kinder, RN, Nurse Care Coordinator in Pulmonary Medicine at Nebraska Medicine, a mentor-mentee match grew into an ongoing professional partnership and friendship. We asked them about what they have learned from each other and the value of connecting through NAHN.

How did your mentor-mentee relationship begin, and what role did NAHN play? Cait: Last fall, I expressed interest in participating as a mentee in the NAHN Mentorship Pilot and was paired with Lori. We were introduced by email and connected by Zoom in November. What started as an introductory meeting quickly became regular video visits and phone calls. Without NAHN, I wouldn’t have gained Lori’s insights or a dear friend. Lori: I signed up through NAHN to be a mentor and was fortunate to be paired with Cait. We began meeting regularly over Zoom to talk about our roles and eventually worked together as she planned and launched her support group.

How has your relationship strengthened your approach to the challenges patients and families face throughout the ILD journey? Cait: Lori is amazing in that she is so willing to share her experience and knowledge. When our patients encounter obstacles, I often ask whether she has faced something similar. Lori has offered great advice on everything from medication prior authorizations to helping patients optimize their oxygen equipment. Instead of starting from zero, her experience gives me a running start in helping our patients.

Lori: Working with Cait to help her get her support group started, and participating in the group, has made me a better support group leader and nurse. I have picked up ideas from the way she prepares questions and keeps conversations moving. Listening to what patients and caregivers are experiencing, and learning what has or hasn’t helped them, also makes all of us better at what we do.

What have you learned from each other? Cait: I have learned so much from Lori’s support group experience. She has helped me with the technical side of meetings as well as how to respond when I don’t know an answer, keep the conversation flowing, and create a welcoming space for patients and caregivers. Lori: Cait has reminded me that even after many years of having my own support group meetings, there are always ways to improve. Seeing how she leads her group has given me new ideas for my own and reinforced the value of learning from colleagues. I have also seen that those who take care of ILD patients are a special group – based on how they talk, interact with and take care of their patients – they give 110% and it is an honor to be among this group and see the amazing care they all provide.

Lori: It has also been reassuring to discover that I’m not the only support group leader who occasionally struggles with technology during hybrid and virtual meetings!

What would you tell other ILD nurses and allied health professionals about joining NAHN? Cait: NAHN has been invaluable to my growth as an ILD nurse. At my institution, I am the only nurse dedicated to ILD. Through NAHN, I have a larger community of peers and mentors I can turn to for another perspective. The network keeps me informed and connected, which ultimately benefits my patients. Whether you work independently or as part of a larger ILD team, I would encourage you to join. Lori: I often say NAHN is a support group for those of us caring for people with ILD. It gives us a place to share what we have learned, talk openly about challenges and help one another provide the best possible care. Those connections make us stronger professionals and better able to support the patients and caregivers we serve.

PF and ILD Clinical Trial Pipeline Reaches a Turning Point The 2026 pulmonary fibrosis and interstitial lung disease clinical trial pipeline includes over 50 active studies across a wide range of ILD conditions, including idiopathic pulmonary fibrosis, progressive pulmonary fibrosis, autoimmune-related ILD, and pulmonary hypertension related to ILD. This breadth marks an important step forward for PF and ILD research. Scientists are studying new ways to slow lung scarring, reduce inflammation, target the immune system, and deliver treatments directly to the lungs. Studies are also being led by a broader mix of pharmaceutical companies, universities, nonprofit organizations, and federal agencies. 32

Key updates include: • The PROLIFIC Risk Score became the first IPF biomarker accepted into an FDA qualification program, an early step toward using blood-based tools to improve future clinical trials. • Nerandomilast (JASCAYD®) was approved for adults with IPF and PPF in 2025, becoming the first new type of PF treatment approved in more than a decade. • Two large phase 3 studies of inhaled treprostinil (Tyvaso®), TETON-1 and TETON-2, met their main goals and showed benefits in preserving lung function in people with IPF. This treatment has not yet been approved for IPF. It was submitted to the U.S. Food and Drug Administration (FDA) as a Supplemental New Drug Application, with anticipated review from the FDA to be complete in late April 2027. More late-stage study results are expected before the end of 2026, followed by results from several mid-stage studies testing entirely new types of treatments in 2027. Together, these developments make the next 18 months a potential turning point for PF and ILD research.

A record-breaking night

On March 9, 2026, Broadway’s brightest voices took the stage at Sony Hall in New York City for the 16th annual Broadway Belts for PFF! Those who could not attend in person were also able to enjoy the livestream from home. The sold-out event was hosted by Isabelle Stevenson Tony Award recipient and pulmonary fibrosis advocate Julie Halston. The evening brought together performers, patients, caregivers, and supporters for a celebration filled with music and hope. Thanks to event sponsors, guests, and virtual donors, Broadway Belts for PFF! raised over a record-breaking $670,000. Funds raised through Broadway Belts for PFF! help support the PFF’s mission to accelerate research, empower our community, and transform care so that everyone with pulmonary fibrosis can live a better life. 34

Broadway Belts for PFF! will return to Sony Hall on Monday, March 8, 2027. Guests will once again be able to attend live in New York City or livestream the show online with a complimentary virtual ticket. In addition to the record-breaking success of Broadway Belts for PFF!, the Pulmonary Fibrosis Foundation continued to expand its fundraising efforts by growing the PFF Walk program.

The PFF Walk Tampa makes its debut in The Sunshine State Expanding to include seven cities and the virtual National Walk Day, the PFF Walk kicked off in 2026 with its newest event, the PFF Walk - Tampa, at Gadsden Park on April 18. Fifteen teams and more than 220 walkers came together for a day filled with hope, inspiration, and community connection. Together, the first annual PFF Walk - Tampa supporters raised an amazing $91,387. People walked to honor loved ones, support those living with PF and ILD, and help us move closer to a cure. Every step and every donation helped raise awareness and power progress.

Missed the PFF Summit 2025? Watch the sessions today on YouTube PFF Summit 2025 took place last November, and the valuable information shared during the conference is available now on YouTube for free! Whether you were unable to attend, missed a session, or would like to revisit a presentation, you can enjoy the recordings from the comfort of home. Held November 13–15, 2025 in Chicago, the PFF Summit brought together more than 1,000 patients, caregivers, healthcare professionals, researchers, and advocates for three days of education, connection, and collaboration. As the largest conference dedicated to PF and ILD, the Summit featured world-renowned experts sharing the latest information on research, treatments, disease management, and patient support. The recorded sessions cover a wide range of topics relevant to those living with PF and ILD, including updates on research and clinical trials, treatment options, supplemental oxygen, lung transplantation, caregiving, and strategies for living well with chronic lung disease. The recordings also include presentations from keynote speakers and nationally recognized experts who shared insights into the future of PF care and research.

Not sure where to start?

Begin with our most popular sessions

Healthcare professionals, earn credit Earn CE, CME, or MOC credits — On your own schedule. Start the self-study activities today to boost your credits!

We’re headed to Bellevue, Washington in 2027!

Partnering With the VA

PFF Summit 2027 will be held in Bellevue, Washington, in the Seattle area, November 11 – 13, 2027. While registration is not scheduled to open until the first part of May 2027, now is a great time to explore the 2025 recordings and experience the educational programming that has made the Summit a cornerstone event for the pulmonary fibrosis community. If you have never attended a PFF Summit, the recordings offer a glimpse into what makes this event such a valuable resource. Beyond the educational content, the conference brings together people from across the PF community who share a commitment to learning, advocacy, and hope for the future. We hope to see you in 2027! 38

PFF Summit 2025 By the numbers

1,046

registrants

states + Washington, DC represented

54 total presentations

20 sponsors

98 studies showcased at the Poster Presentation

exhibitions 39

Thank you to our PFF Summit 2025 sponsors. The PFF Summit is funded through the generous support of corporations, foundations, and individuals who have been impacted by PF and ILD. DIAMOND

GOLD

SILVER

MEDICAL CENTER

A Legacy of Hope: Remembering an Anonymous Friend

The Pulmonary Fibrosis Foundation recently received a remarkable seven-figure gift from the estate of an anonymous donor—a powerful reminder of how one person’s generosity can shape the future for thousands. When you include the PFF in your estate or will, you’re doing more than making a gift. You’re planting seeds of hope for the patients, families, and caregivers who will walk this journey after us. A planned or legacy gift ensures your values live on, fueling groundbreaking research, sustaining vital patient support programs, and moving us closer to our ultimate goal: a world without pulmonary fibrosis. We are deeply grateful to this anonymous friend, whose final act of generosity will continue changing lives for years to come.

Interested in learning more about planned giving? Contact Seth Klein at sklein@pulmonaryfibrosis.org or visit our Planned Giving page to explore how you can leave your own legacy of hope. 41

Expanding Our Reach, Strengthening Our Community When someone is diagnosed with pulmonary fibrosis (PF), one of the first questions they often ask is, “What now?” The PFF wants every person facing that question to find answers, support, and hope as quickly as possible. That’s why we’re making it a priority to expand our reach so that more people living with PF, their families, caregivers, and healthcare providers can connect with the resources they need faster. Every day, people are searching online for information about the symptoms they’re experiencing. Some have just received a 42

diagnosis. Others have been living with PF for years but don’t yet know about the educational programs, support groups, research opportunities, and community that the PFF provides. Our goal is simple: make it easier for every one of those individuals to find us. To accomplish that, we’re investing in the ways people connect today. We’re strengthening our presence on social media so we can share trusted information, inspiring stories, and timely updates with broader audiences. We’re also creating a better experience on mobile devices. More people than ever access health information from their phones and tablets. A mobile-friendly website means visitors can quickly find educational materials, upcoming events, support services, and research opportunities with fewer barriers and greater ease. Our email communications are evolving, too. By creating more engaging, relevant content, we’re working to ensure that our most important information doesn’t get lost in algorithms or crowded search results. Whether we’re sharing the latest research developments, announcing educational programs, or highlighting opportunities to connect with others in the PF community, we want every message to be easy to access. Hope grows when people are connected. It grows when knowledge is shared. And it grows every time someone discovers they are not alone. 43

PFF expands leadership and welcomes new Board members The PFF recently promoted three leaders into new executive roles and welcomed two additional members to its Board of Directors. These leaders will help guide the Foundation as it carries out its five-year strategic plan, The PFF is Me. Jessica Shore, PhD, RN PFF Chief Scientific Officer Since joining the Foundation in 2020, Shore has led the PFF Care Center Network, a group of specialized interstitial lung disease centers across the country. She has also overseen the PFF Registry, a key research resource for patients, families, caregivers and lung transplant recipients affected by pulmonary fibrosis and interstitial lung disease. As Chief Scientific Officer, Shore will lead the Foundation’s scientific strategy and help advance its research priorities.

Jennifer Mefford Chief Partnerships Officer Mefford currently leads the Foundation’s Corporate Partnerships team and has helped build relationships with companies, healthcare professionals, and patient communities. As Chief Partnerships Officer, Mefford will guide partnerships across the Foundation and build new relationships, strengthen resources, and expand the PFF’s reach and impact. Zoe D. Bubany, MBA Senior Vice President, Research Grants and PFF Summit Bubany’s expanded role will provide leadership for the PFF Research Grants Program and the PFF Summit, including grant-making activities, research review committee facilitation, and conference planning. This position will help ensure these critical programs continue to operate with excellence and remain closely aligned with the Foundation’s strategic goals.

Welcome new PFF Board Members! Bradford Bemiss, MD, MSCR Dr. Bradford Bemiss is a board-certified pulmonologist and critical care physician based in Chicago. He serves as Associate Professor of Pulmonary and Critical Care Medicine at Northwestern University Feinberg School of Medicine and Director of Northwestern Medicine’s PFF Care Center Network site. With decades of experience in ILD, lung transplantation, clinical trials, guideline development, and multidisciplinary care, Dr. Bemiss brings a strong clinical and academic perspective to the PFF. Krishna Thavarajah, MD, MS Dr. Krishna Thavarajah is a board-certified pulmonologist and critical care physician based in Detroit. She serves as Director of the Interstitial Lung Disease Program at Henry Ford Hospital and Director of Henry Ford’s PFF Care Center Network site. With more than 15 years of experience leading an ILD program and longstanding involvement across PFF committees and programs. Dr. Thavarajah brings clinical expertise, institutional leadership, and bedside perspective to the organization. 46

Thank you to each PFF Board Member who has completed their term Furthermore, the PFF would also like to thank David McNinch and Terence Hales, who served 10 years and recently completed their terms on the Board of Directors.

On the road with the PFF This year, the PFF was honored to attend the Pulmonary Hypertension Association (PHA) conference and the American Thoracic Society International Conference (ATS). To see which conferences we’ll be heading to next, sign up for our newsletters or follow us on social media. 47

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 Join Team PFF and be a part of a committed group of volunteers across the country. Turn your passions and interests into a unique fundraising campaign to advance vital research and programs that help patients and families live longer, healthier lives. For questions, contact Alyssa Athens at aathens@pulmonaryfibrosis.org or 312.224.8112.

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, Instagram, YouTube, and LinkedIn.

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 Bradford Bemiss, MD, MS Jane F. Casey Harold R. Collard, MD, MS Julie Halston Jeff Harris Susan S. Jacobs, RN, MS Heather Kagel Pankaj “PJ” Kamani Devi Kumar-Nambiar, JD, MBA William T. Schmidt Krishna Thavarajah, MD

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 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 Marilyn Glassberg, MD Gillian Goobie, MD Lida Hariri, MD, PhD Kristin Highland, MD Jeremy Katzen, MD Bhavika Kaul, MD Jad Kebbe, MD Melanie Koenigshoff, MD, PhD

Maurico Rojas, MD Mary Beth Scholand, MD Jessica Shore, PhD, RN Patricia J. Sime, MD Mary Strek, MD Paul Wolters, MD

Andy Limper, MD PAST CHAIR David A. Lynch, MB, BCh PAST CHAIR Bethany Moore, PhD PAST CHAIR Mitchell Olman, MD PAST CHAIR

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 Jennifer Mefford CHIEF PARTNERSHIPS OFFICER Jessica Shore, PhD, RN CHIEF SCIENTIFIC OFFICER

STAFF Zoë D. Bubany, MBA SENIOR VICE PRESIDENT, RESEARCH GRANTS AND PFF SUMMIT Sonye Danoff, MD, PhD SENIOR MEDICAL ADVISOR, PFF CARE CENTER NETWORK Tejaswini Kulkarni, MD, MPH SENIOR MEDICAL ADVISOR, PFF REGISTRY Joyce S. Lee, MD, MS SENIOR MEDICAL ADVISOR, RESEARCH AND HEALTH CARE QUALITY

Alyssa Athens Courtney Biewald Alvin Coleman Diana DeRosa Laura Devitt Roberto Espino Dana Hornaday Tamaris Jeune Sarah Brandywine Johnson Sheena Kelly Mary Kiener Anna LaValle Jamie Lederer, MSN, CRNP Kelly Lynch Noah Marshall Jake Meding Karisa Merrill Kathleen Park

Diana Rincon Chuck Rogers Ingrid Schwab Samantha Simmons Jennifer Simokaitis Ashley Smith Leah Sorini Meredith Taylor Sean Thinnes Aubrey Trecek Amy Wardzala Andrea Young

PFF Education

Symposium

Living with PF and ILD can come with a lot to navigate. Let’s navigate it together at this two-day virtual conference! The PFF Education Symposium is a two-day, online conference that you can attend from anywhere. Experts in PF and ILD will share the latest information on research, treatments, supplemental oxygen, and much more. Attendees can also connect and network with others in the community. Registration is $10. JOIN US! 56