Program
Watch the full-length recorded sessions on YouTube!
All sessions from this year's PFF Summit 2023 were recorded. Click the button below to view the sessions on our official PFF Summit 2023 playlist.
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Special note for industry attendees
The PFF strongly advises against the hosting of investigator meetings immediately before, during, or following the PFF Summit. Many investigators are involved with the PFF Summit as faculty and/or organizers and have cited that participation in these types of meetings during conference week leads to conference fatigue (or pulls them away from their Summit obligations). PFF recommends finding an alternative time to bring together investigators.
Legend
🟢 = For healthcare professionals
🔵 = For patients, caregivers, lung transplant recipients, and those who have lost loved ones
⭐ = Plenary session for all attendees
🩺 = Closed for healthcare professionals only
Thursday, November 9
🟢🩺
8:30 a.m. - 1:00 p.m.
Nurses and Allied Health Professionals
Location: Mediterranean 4-5
Session chairs: Jamie Lederer, CRNP, MSN; Janell Reichuber, MSN, RN
Speakers: Jessica Shore, PhD, RN; Jamie Lederer, CRNP, MSN; Janell Reichuber, MSN, AGNP; Jamie Lederer, CRNP, MSN; Susan McCue, MSW; Lori Reed, MSN; Annlise Calypso, MSN, CRNP; Renee Bergtold, MS, RRT-RPFT; Nicole Davis, BSN, MPH; Lori Flint, BSN, RN; Heather Bachert, MSN, ANP-BC; Susan Jacobs, RN, MS
- Welcome and updates from the NAHN working groups
- Understanding the diagnostic pathway and treatment in ILD:
- The patient’s journey
- Pulmonary hypertension related to ILD: What you need to know
- The autoimmune ILD patient journey: What are you testing for?
- Non-pharmacological treatments for ILD: Pulmonary rehabilitation, oxygen therapy, support groups
- Addressing the challenges of care in ILD: Complexity of patient care, coordination of care, medication
Partnering with the lung transplant center - Legislation journey: How to get involved to make an impact
🟢🩺
8:30 a.m. - 4:00 p.m.
Community Pulmonologists
Location: Mediterranean 6
Chairs: Patricia Sime, MD; Tracy Luckhardt, MD
Speakers: Patricia Sime, MD; Tracy Luckhardt, MD; Shweta Sood, MD; Erin Wilfong, MD, PhD; Stephen Hobbs, MD; Amy Case, MD; Rebecca Anna Gersten, MD; Kerri Aronson, MD, MS; Margaret Salisbury, MD; Robert Hallowell, MD; Steven Nathan, MD; Christopher King, MD; Toby Maher, MD, PhD; Kathleen O. Lindell, PhD, RN; Kevin Flaherty, MD, MS; Sonye Danoff, MD, PhD; CHAIR: Daniel Marinescu, MD, MHSc; Leigh Minuk, MD; Amanda Grant-Orser, MBBCh, MD; Kerri Aronson, MD, MS
- Welcome, housekeeping, and introductions
- Diagnosis of ILD: Updates to guidelines and arriving at the right diagnosis
- Role of rheumatology: When to use rheumatology and serology consults
- HRCT Interpretation: Perils and pitfalls
- Bronchoscopic tools: Use of genomic classifiers and options for cryobiopsy
- Panel discussion / Q&A
- Symptom management in ILD: Cough, dyspnea, and fatigue
- Use of antifibrotic agents: When to start, managing side effects, and managing expectations
- Hypersensitivity pneumonitis
- CTD-ILD: Treatment and management
- PH-ILD: Diagnosis and treatment options
- Panel discussion / Q&A
- Lung transplant update: Outcomes and improvements; when and who to refer
- When to refer to clinical trials and what is on the horizon for treatment of ILD
- When and how to use palliative care
- Panel discussion / Q&A
- PFF Registry: What you need to know and why it’s important
- The PFF Care Center Network: How you can collaborate with a CCN site
- This MDD will present interesting cases and include an interactive discussion with a live Q&A
🔵
Noon - 1:00 p.m.
Tune In To Lung Health
Location: Mediterranean 1
Session chair: Jennifer Mefford
Speakers: Bernie Williams; Jamie Akers, BAS-HSA, RRT-ACCS
Event registration is required in order to attend.
Doors will open at 11:45 a.m. and lunch will be provided (the actual event begins at noon). This session is open to all PFF Summit registered patient and caregiver attendees, but space is limited. Registration for this special event is required and is based on a first-come, first-served basis.
During this session, New York Yankees legend and Latin Grammy nominee Bernie Williams will share his personal connection to interstitial lung disease (ILD) and help bring to life the role music can play in supporting people impacted by the disease. In addition, respiratory therapist Jamie Akers, BAS- HSA, RRT-ACCS, will demonstrate how to increase strength and endurance through interactive pulmonary rehabilitation exercises. This event is produced in collaboration with Boehringer Ingelheim Pharmaceuticals, Inc.
Williams, who has teamed up with Boehringer Ingelheim on Tune In To Lung Health, knows the impact of music firsthand. His father, who passed away from idiopathic pulmonary fibrosis in 2001, ignited his passion for music and it was one of the lifelong bonds they shared. After his dad’s passing, Williams often used music to remain connected to him.
The PFF does not endorse the company or its trials, and views expressed during the event may not reflect the views of the PFF.
🔵
1:30 p.m. - 2:30 p.m.
Pulmonary fibrosis overview and introduction to the PFF
Location: Mediterranean 2-3
Session chair: Lisa DiChiara, RN, MS
Speakers: Franck Rahaghi, MD, MHS; Sean Callahan, MD; Carla Copeland, MD
- Introduction to the Pulmonary Fibrosis Foundation
- Overview of pulmonary fibrosis
- What is pulmonary fibrosis?
- Causes and classification of pulmonary fibrosis
- Testing and monitoring in pulmonary fibrosis
- Symptom management for PF patient
🔵
3:00 p.m. - 4:00 p.m.
Introduction to the PFF Registry and the Care Center Network
Location: Mediterranean 1
Session chair: Ryan Boente, MD
Speakers: Kevin Flaherty, MD, MS; Jessica Shore, PhD, RN
- PFF Registry
- Overview of who/what is in the PFF Registry
- Summary of the Care Center Network Registry and the Community Registry
- PFF Care Center Network: Why it’s important and how you can find a CCN site
🔵
3:00 p.m. - 4:00 p.m.
Understanding environmental impacts: Climate change,
mold risk factors, and more
Location: Mediterranean 2-3
Session chair: Joyce Lee, MD
Speakers: Margaret Salisbury, MD; Coralynn Sack, MD, MPH; Gillian Goobie, MD, PhD
- Health risks of climate change in ILD and other diseases
- Wildfire health impacts & personal protective equipment
- Advocating for environmental health equity and policies
🔵🟢
5:00 p.m. - 8:00 p.m.
Welcome Reception and Poster Presentation
Location: Coquina Ballroom
Please join us for the Welcome Reception and Poster Presentation! During this time, you can enjoy hors d’oeuvres and drinks, meet and mingle with other attendees and exhibitors, and browse posters created by researchers. The posters provide a glimpse of what is currently underway for a variety of research projects. Each researcher will be stationed at their poster where they will provide you with a brief overview of their work. At 7:15 p.m., the Awards Ceremony will take place to announce the winners. The PFF will award prizes to the Top 5 academic posters.
Friday, November 10
BREAKFAST
Available from 6:30 a.m. until 7:45 a.m. in the exhibit hall
LUNCH
Served from noon until 1:15 p.m in foyer outside Mediterranean 4-5. All attendees are welcome to enjoy lunch
during the Clinical Trials Innovation Series.
EXHIBIT HALL
7:00 a.m. to 5:30 p.m.
🟢🩺
7:00 a.m. - 7:45 a.m.
PH-ILD: Making the case for early detection
Join United Therapeutics on Friday, November 10 from 7:00 a.m. - 7:45 a.m. for a discussion about early detection of PH-ILD. Doors will open at 6:30 a.m. for breakfast. All healthcare providers attending the PFF Summit 2023 are invited to register for this session. Registration is free, and breakfast and light refreshments will be provided to attendees. Dr. Mary Beth Scholand from the University of Utah will present PH-ILD disease state education and a case study on the impact and early indicators of PH-ILD. Dr. Scholand’s presentation will be followed by a Q&A from the audience. Presentation and discussion topics include:
- Review the definition of PH-ILD and its impact on patient outcomes
- Discuss the need to improve early detection of PH in patients with ILD
- Review potential clinical indicators of PH-ILD beyond Echo and physical exam
- Discuss the need for hemodynamic data obtained via RHC to formally diagnose PH
This is an industry-sponsored symposium. The PFF does not endorse the company, trial, or any information shared during the health care provider symposium.
⭐🟢🔵
PLENARY SESSION
8:00 a.m. - 10:00 a.m
It takes a village: The critical role of federal agencies
in PF research and care
Location: Mediterranean 4-5
Keynote speaker: Banu Karimi-Shah, MD
Session chair: Sonye Danoff, MD, PhD
Additional speakers: Matt Craig, PhD; Daniel Kass, MD; Susan Jacobs, RN, MS
- Keynote Address Food & Drug Administration (FDA) perspective: Regulatory considerations for developing new treatments while maintaining clinical trial safety
- Talk 2 National Heart, Lung, & Blood Institute (NHLBI): Charting a course for the future of PF research
- Talk 3 How the Department of Defense supports PF research relevant to our military and our patients
- Talk 4 Medicare: The urgent need for supplemental oxygen reform
🟢
10:30 a.m. - noon
Disparities in ILD
Location: Mediterranean 7-8
Session chair: Deji Adegunsoye, MD, PhD
Speakers: Deji Adegunsoye, MD, PhD; Hyun Kim, MD; Starlet Harrimon, BSN, RN-BC
- Sex and racial disparities in diagnosis and management of the fibrotic ILDs
- Neighborhood disparities and impact of rural-urban geo-location on outcomes in pulmonary fibrosis
- Specialty pharmacies, 340B programs, and how to support your patients
🔵
10:30 a.m. - noon
Living with PF in a COVID world
Location: Mediterranean 2
Session chair: Sachin Chaudhary, MD
Speakers: Amy Case, MD; Jose Herazo-Maya, MD; Karthik Suresh, MD
- Current state of COVID: Rates of infection, variants, vaccination efficacy, and more
- Ongoing COVID considerations for PF patients and caregivers
- Understanding pulmonary fibrosis diagnosed post-COVID (commonalities between PF and COVID)
🔵
10:30 a.m. - noon
ROUNDTABLES: IPF and other ILDs of unknown cause
Location: Mediterranean 1
Session chairs: Kaissa de Boer, MD
Speakers: Joyce Lee, MD; Dot Ivey; Mario Larrea
- Journey to the right diagnosis
- Roundtables: Expert and patient discussion
🔵
10:30 a.m. - noon
ROUNDTABLES: Autoimmune ILDs, hypersensitivity pneumonitis, and unclassifiable ILD
Location: Mediterranean 4-5
Session chairs: Robert Hallowell, MD
Speakers: Anita Clos; Catherine Bonham, MD; Patricia Sime, MD; Tracy Luckhardt, MD; Isabel Sanchez, MEd
- Journey to the right diagnosis
- Roundtables: Expert and patient discussion
🔵
12:15 p.m. - 1:15 p.m.
Clinical Trials Innovation Series
Location: Mediterranean 4-5
Featuring: Boehringer Ingelheim; Scleroderma Research Foundation; Pliant Therapeutics;
University of Colorado
The popular Clinical Trials Innovation Series returns! In this session, enjoy lunch while learning about the latest developments in clinical trials for those living with pulmonary fibrosis and interstitial lung disease.
The PFF does not endorse the companies or its trials, and views expressed during the event may not reflect the views of the PFF.
🟢
1:30 p.m. - 3:00 p.m.
Use of genetics in ILD
Location: Mediterranean 7-8
Session chair: Chad Newton, MD
Speakers: Chad Newton, MD; Mary Armanios, MD; Imre Noth, MD
- Impact of telomeropathies on the clinical course of care in pulmonary fibrosis
- When is the right time for genetic testing for our patients
- Have we reached precision medicine in ILD? The role of genetic and genomic biomarkers
- Pros and cons debate: The use of cryobiopsy
🔵
1:30 p.m. - 3:00 p.m.
Survive and thrive post-lung transplant: Part I
Location: Mediterranean 3
Session chair: Christopher King, MD
Speakers: Christopher King, MD; Srihari Veeraraghavan, MD; Jeff Lucas
- Medication interactions and possible complications: What to avoid
- Infection control without complete isolation
- Caregiving for the transplant recipient
🔵
1:30 p.m. - 3:00 p.m.
Using narrative medicine to understand and live with chronic illness
Location: Mediterranean 1
Session chair: Amy Case, MD
Speakers: David Weill, MD; Dionn Tunis, MSW; Forrest Reed
- How storytelling improves health outcomes: A transplant physician’s perspective from the frontlines
- PFF Ambassadors: The power of your story
🔵
1:30 p.m. - 3:00 p.m.
Research: Be the change you want to see in PF
Location: Mediterranean 2
Session chair: Murali Ramaswamy, MD
Speakers: Murali Ramaswamy, MD; Tim Sheehan, MS; Janell Reichuber, MSN, AGNP; Kevin Flaherty, MD, MS
- Basic, translational, and clinical research: Learn the differences and understand the timelines
- The importance of participating in clinical trials
- What is it like to participate in a clinical trial? Process, expectations, patient reported outcomes, and more
- The PFF Registry and why it matters to research
🟢
3:30 p.m. - 5:00 p.m.
Beyond HRCT
Location: Mediterranean 7-8
Session chair: Joyce Lee, MD
Speakers: Lida Hariri, MD, PhD; Tejaswini Kulkarni, MD, MPH; Stephen Humphries, PhD; Anna Podolanczuk, MD
- Novel uses of imaging in evaluation, diagnosis, and prognosis of PF (OCT)
- Novel uses of imaging in evaluation, diagnosis, and prognosis of PF (PET CT)
- Artificial intelligence in HRCT analysis
- Interstitial lung abnormalities (ILAs): What do we currently know?
🟢
3:30 p.m. - 5:00 p.m.
Multidisciplinary discussion (MDD); Expert presentations
of interesting cases
Location: Mediterranean 6
Session chair: Sonye Danoff, MD, PhD
Speakers: Yasmeen Butt, MD; Jubal Watts, MD; Sonye Danoff, MD, PhD
- Pathology
- Radiology
- Rheumatology
🔵
3:30 p.m. - 5:00 p.m.
Understanding the differences: Palliative care, hospice,
and end of life planning
Location: Mediterranean 3
Session chair: Kathleen O. Lindell, PhD, RN
Speakers: Erica Dixon-Johnson, RN, BSN; Rebecca Anna Gersten, MD; Laurie Chandler, CFP; Devi Kumar-Nambiar, JD, MBA
- When it’s time: Palliative care vs. hospice care and how to obtain these services
- Testimonials: Patient stories and case examples of palliative care and hospice care
- End of life planning: Organizing your estate
🔵
3:30 p.m. - 5:00 p.m.
Life after loss and honoring your loved one
Location: Mediterranean 2
Session chair: Abigail Koch, MD
Speakers: Kesha Graham, LISW-CP; Dawn Iwamasa, PhD, CCLS, MT-BC
- Coping with life after losing a loved one
- Preparing for the holidays
- Honoring your loved one through the power of music
🔵
3:30 p.m. - 5:00 p.m.
The caregiving journey
Location: Mediterranean 1
Session chair: Krishna Thavarajah, MD, MS
Speakers: Katie Rosen, RN, MSN, ANP; Megan Crawford, MSW, LCSW-C; Jeanette Akujuobi; Lorna Boyle;
Debbie O'Rourke
- What to expect from the various stages of PF
- Caring for yourself while caring for others
- Support services and resources for caregivers
- Caregiver panel
🟢🔵
6:00 p.m. - 9:00 p.m.
Cocktail hour and networking dinner
Location: Mediterranean 4-5
Networking dinner: 7:00 p.m. - 9:00 p.m.
All attendees are invited to the Networking Dinner for a sit-down meal and cocktails or light beverages. We encourage you to meet and mingle with other guests seated at your table! During the evening, special guests will take the stage to provide remarks.
Saturday, November 11
BREAKFAST
Available from 6:30 a.m. until 7:45 a.m. in the exhibit hall
LUNCH
Served from noon until 1:15 p.m in foyer outside Mediterranean 4-5. All attendees are welcome to enjoy lunch
during the Clinical Trials Innovation Series.
EXHIBIT HALL
7:00 a.m. to 11:30 a.m.
🇺🇸🔵
6:45 a.m. - 7:45 a.m.
Veterans Breakfast
Location: Mediterranean 4-5
Session Chair: John Stauffer, MD
Speakers: Jennifer Wescoe; John Stauffer, MD; Mohleen Kang, MD
In recognition of Veterans Day, all Veterans, caregivers of Veterans, and those providing care to Veterans are invited to this exclusive session.
⭐🟢🔵
PLENARY SESSION
8:00 a.m. - 10:00 a.m
It takes a village: The critical role of federal agencies
in PF research and care
Location: Mediterranean 4-5
Keynote speaker: D. Clark Files, MD
Session chair: Joyce Lee, MD
Additional speakers: Amy Case, MD; Erica Farrand, MD; Shavini Fernando;
John Kim, MD, MS; Keith Boyle; Demeshia Montgomery
- Talk 1 Setting the stage: Why is this important, how clinical trials are conducted, language of clinical
trials, and challenges of clinical trials - Keynote address Adaptive clinical trials: The future
- Talk 2 Artificial intelligence (AI) tools and algorithms: How to use AI/machine learning to increase
identification and recruitment of patients - Talk 3 Emerging devices used in clinical trials
- Patient panelist introductions
🟢
10:30 a.m. - noon
Reviewing progress: Research in the pipeline
Location: Mediterranean 7-8
Session chair: Beth Moore, PhD
Speakers: Genta Ishikawa, MD, MPH
- Top 3 poster winners present their projects
- PFF Scholars: Early career investigators making a difference
🔵
10:30 a.m. - noon
All about genetics
Location: Mediterranean 1
Session chair: Jose Herazo-Maya, MD
Speakers: Sonye Danoff, MD, PhD; Jesse Roman, MD; Janet Talbert, MS, CGC; David Zhang, MD, MS;
Jeremy Katzen, MD
- Genetics and PF: Whether to get tested
- Familial PF and Hermansky-Pudlak syndrome
- The role of telomere biology disorders in PF and how to get tested
🔵
10:30 a.m. - noon
Breathe easy: Using supplemental oxygen
Location: Mediterranean 3
Session chair: Susan Jacobs, RN, MS
Speakers: Annlise Calypso, MSN, CRNP; Katie Rosen, RN, MSN, ANP-C; Susan Jacobs, RN, MS
- Oxygen overview
- Equipment usage and safety
- Tips to receive the oxygen you need: Compressed, liquid, or portable oxygen concentrators (POCs)
🔵
10:30 a.m. - noon
Taking the leap: Preparing for a lung transplant
Location: Mediterranean 2
Session chair: Dan Dilling, MD
Speakers: Kapilkumar Patel, MD; Lisa DiChiara, RN; Lisa DiChiara, RN, MS; Sam Kirton; Maggi Liebig
- Navigating the evaluation process
- Pulling together the appropriate supports: Social, emotional, and financial
- Patient perspectives
🔵
12:15 p.m. - 1:15 p.m.
Clinical Trials Innovation Series
Location: Mediterranean 4-5
Featuring: United Therapeutics; Bristol Myers Squibb; Genentech, a member of the Roche Group
The popular Clinical Trials Innovation Series returns! In this session, enjoy lunch while learning about
the latest developments in clinical trials for those living with pulmonary fibrosis and interstitial lung disease.
12:15 p.m. - 1:15 p.m.
The PFF does not endorse the companies or its trials, and views expressed during the event may not reflect
the views of the PFF.
🟢
1:30 p.m. - 3:00 p.m.
Global view of ILD
Location: Mediterranean 7-8
Session chair: Gillian Goobie, MD, PhD
Speakers: Gillian Goobie, MD, PhD; Maria Padilla, MD; Mohammad Ghanbar, MBChB, MD
- Climate change and environmental impact in patients with fibrotic
- Worldwide impact of ILD and how diagnosis and treatment differs between countries and regions
- Post-COVID and ILD development and how this differs in various countries
🔵
1:30 p.m. - 3:00 p.m.
Your PF toolkit: Tips and strategies for
managing symptoms
Location: Mediterranean 1
Session chair: Ross Summer, MD
Speakers: Ross Summer, MD; Jamie Lederer, CRNP, MSN
- Strategies for managing symptoms
- Your medications: What to expect
- Nutrition, supplements, and what to avoid
🔵
1:30 p.m. - 3:00 p.m.
Survive and thrive post-lung transplant: Part II
Location: Mediterranean 3
Session chair: David Zisman, MD
Speakers: Jamie Akers, BAS-HAS, RRT-ACCS; Hannah Mannem, MD; Ann Lucas, PMHNP-BC
- Protecting your new lungs: Exercise post-transplant
- Understanding possible long-term complications: Skin cancer, other cancers, and more
- Testimonial: Ann Lucas shares her story
🔵
1:30 p.m. - 3:00 p.m.
Building resilience
Location: Mediterranean 2
Session chair: Lanier O’Hare, PhD, CRNP
Speakers: Lanier O’Hare, PhD, CRNP; Tania Von Visger, PhD, APRN
- How you and your loved ones can prepare for change
- Anxiety and depression: How you can build resilience
- Meditation and mindfulness
🟢
3:30 p.m. - 5:00 p.m.
The future of clinical trials in ILD
Location: Mediterranean 7-8
Session chair: Debabrata Bandyopadhyay, MBBS, MD
Speakers: Kevin Flaherty, MD, MS; Tejaswini Kulkarni, MD, MPH; Cory Hogaboam, PhD
- What we have learned from the PFF Patient Registry
- REMAP-ILD: Where we are, where we’re going, and what we need from you
- Pre-clinical models and drug development
🟢
3:30 p.m. - 5:00 p.m.
Roundtable #1: Understanding and communicating
hospice and palliative care options
Location: Mediterranean 6
Session chair: Erica Farrand, MD
Speakers: Kathleen O. Lindell, PhD, RN; Rebecca Anna Gersten, M; Anna Gersten, MD; Lanier O’Hare, PhD, CRNP
- The importance of ethnic and racial diversity: Communication and how it varies by culture
- Addressing stigma of hospice and palliative care and how to find alternative wording
- Patient presentations and role play — Audience response with Q&A
🟢
3:30 p.m. - 5:00 p.m.
Roundtable #2: How to improve symptom management
in PF
Location: Mediterranean 4-5
Session chair: Erica Farrand, MD
Speakers: Kerri Aronson, MD, MS
- Assessing symptoms: ILD specific PROs
- Understanding breathlessness
- Cough in all its forms
- Fatigue: Finding the source
🔵
3:30 p.m. - 4:30 p.m.
Navigating your social and patient assistance resources
Location: Mediterranean 1
Session chair: Jisha Joshua, MD
Speakers: Lori Flint, BSN, RN; Starlet Harrimon, BSN, RN-BC
- Patient assistance programs and social support services: Understanding what is available and
how to access
🔵
3:30 p.m. - 4:30 p.m.
Improving pulmonary fitness
Location: Mediterranean 2
Session chair: Nydia Martinez, MD
Speakers: Aubree Carlson, PhD, RN; Renee Bergtold, MS, RRT-RPFT; Lee Fogle
- Pulmonary rehabilitation (PR): The essential first step
- Overview of virtual resources — doing PR at home
- Different stages of PR
- What do all these numbers mean? Understanding pulmonary function tests (PFTs)
- Using exercise as a lifestyle
🔵
3:30 p.m. - 4:30 p.m.
Get involved! Advocating for better access to
supplemental oxygen
Location: Mediterranean 3
Session chair: Kate Gates, MSc
Speakers: Karen Smoot, BS; Kate Gates, MSc; Tom Mayes, MD; Cindy Chandler
- Patients’ current experiences with supplemental oxygen
- Current updates on oxygen reform legislation and how you can get involved
- Perspectives from a former congressional staff member and a PFF Advocate