PFF Summit 2023 Program

Welcome to the world’s largest conference on pulmonary fibrosis!

PROGRAM

Welcome to the JW Marriott Orlando!

4040 Central Florida Parkway Orlando, FL 32837

While attending the PFF Summit, you can treat yourself to the region’s most elegant destination, where a picturesque setting, world-class recreational features, immaculate facilities and unparalleled service come together to create an exceptional resort.

The resort features a lazy river pool, three-story luxury Ritz-Carlton Spa, 18-hole championship golf course and Grande Lakes Sports including fishing, eco-tours, mountain bike trail and more.

Further, you can experience a true culinary experience at Grande Lakes Orlando, where the luxury resort offers a wealth of food and beverage concepts, sure to please any palate.

Table of contents THURSDAY Nurses and Allied Health Professionals ............................................................................................................... 4 Community pulmonologists ...................................................................................................................................... 5 Tune In To Lung Health ................................................................................................................................................ 6 Pulmonary fibrosis overview and introduction to the PFF ............................................................................. 6 Introduction to the PFF Registry and the Care Center Network ................................................................... 7 Understanding environmental impacts ................................................................................................................. 7 Welcome Reception and Poster Presentation ..................................................................................................... 7

FRIDAY PH-ILD: Making the case for early detection .......................................................................................................... 8 Plenary Session | It takes a village: The role of federal agencies in PF research and care ............... 9 Disparities in ILD ............................................................................................................................................................. 9 Living with PF in a COVID world ............................................................................................................................... 10 Roundtables: IPF and other ILDs of unknown cause ....................................................................................... 10 Roundtables: Autoimmune ILDs, hypersensitivity pneumonitis, and unclassifable ILD .................... 11 Clinical Trials Innovation Series ................................................................................................................................ 11 Use of genetics in ILD ................................................................................................................................................... 12 Survive and thrive post-lung transplant: Part I .................................................................................................... 12 Using narrative medicine to understand and live with chronic illness ...................................................... 12 Research: Be the change you want to see in PF ................................................................................................. 13 Beyond HRCT ................................................................................................................................................................. 13 Multidisciplinary discussion: Expert presentations and interesting cases ............................................... 13 Understanding the differences: Palliative care, hospice, and end-of-life planning ..............................14 Life after loss and honoring your loved one ........................................................................................................ 14 The caregiving journey ................................................................................................................................................ 15 Cocktail hour and networking dinner .................................................................................................................... 15 SATURDAY Veteran’s Breakfast ........................................................................................................................................................ 16 Plenary Session | Clinical trials: Accelerating finding a cure ..................................................................... 16 Reviewing progress: Research in the pipeline .................................................................................................... 17 All about genetics ........................................................................................................................................................... 17 Breathe easy: Using supplemental oxygen .......................................................................................................... 18 Taking the leap: Preparing for a lung transplant ................................................................................................ 18 Clinical Trials Innovation Series ................................................................................................................................ 18 Global View of ILD .......................................................................................................................................................... 19 Your PF Toolkit: Tips and strategies for managing symptoms ...................................................................... 19 Survive and thrive post-lung transplant: Part II ................................................................................................... 19 Building resilience ......................................................................................................................................................... 20 The future of clinical trials in ILD .............................................................................................................................. 20 Roundtable #1: Understanding and communicating hospice and palliative care options ............... 21 Roundtable #2: How to improve symptom management in PF ................................................................... 21 Navigating your social and patient assistance resources .............................................................................. 22 Improving pulmonary fitness .................................................................................................................................... 22 Get Involved! Advocating for better access to supplemental oxygen ....................................................... 22 PFF Summit Program Organizing Committee ..................................................................................................... 23

Thursday, November 9 Exhibit Hall 1:00 p.m. to 8:30 p.m. | Location: Coquina Ballroom

Legend Unless noted otherwise with a symbol, you may attend any session you’d like. The color codes below represent sessions that have been tailored to best fit your experience. The colors are located next to the time of each session.

Newly diagnosed patients and caregivers

Those who have been living with PF for awhile

Healthcare professionals & researchers

Those who have lost a loved one to PF

8:00 a.m. - 1:30 p.m.

Nurses and Allied Health Professionals Location: Mediterranean 4-5 Session chairs: Jamie Lederer, CRNP, MSN; Janell Reichuber, MSN, RN

This is a closed session for healthcare providers only.

Welcome and updates from the NAHN working groups

Jessica Shore, PhD, RN; Jamie Lederer, CRNP, MSN; Janell Reichuber, MSN, AGNP

Understanding the diagnostic pathway and treatment in ILD: The patient’s journey

Jamie Lederer, CRNP, MSN; Susan McCue, MSW

Pulmonary hypertension related to ILD: What you need to know

Lori Reed, MSN

The autoimmune ILD patient journey: What are you testing for?

Annlise Calypso, MSN, CRNP

Coffee break: 10:05 a.m. - 10:15 a.m.

Non-pharmacological treatments for ILD: Pulmonary rehabilitation, oxygen therapy, support groups

Renee Bergtold, MS, RRT-RPFT Nicole Davis, BSN, MPH

Addressing the challenges of care in ILD: Complexity of patient care, coordination of care, medication

Lori Flint, BSN, RN

Partnering with the lung transplant center

Heather Bachert, MSN, ANP-BC

Networking Lunch: Noon-12:45 p.m Legislation journey: How to get involved to make an impact 4

Susan Jacobs, RN, MS

8:00 a.m. - 4:00 p.m.

This is a closed session for healthcare providers and industry representatives only.

Community pulmonologists Location: Mediterranean 6 Chairs: Patricia Sime, MD; Tracy Luckhardt, MD Welcome, housekeeping, and introductions

Diagnosis of ILD

Diagnosis of ILD: Updates to guidelines and arriving at the right diagnosis Role of rheumatology: When to use rheumatology and serology consults

Patricia Sime, MD; Tracy Luckhardt, MD Shweta Sood, MD Erin Wilfong, MD, PhD

HRCT Interpretation: Perils and pitfalls

Stephen Hobbs, MD

Bronchoscopic tools: Use of genomic classifiers and options for cryobiopsy

Amy Case, MD

Panel discussion / Q&A 15 minute break: 9:45 a.m. - 10:00 a.m.

Treatment of ILD and IPF

Treatment of Non-IPF ILD

Symptom management in ILD: Cough, dyspnea, and fatigue Use of antifibrotic agents: When to start, managing side effects, and managing expectations

Rebecca Anna Gersten, MD Kerri Aronson, MD, MS

Hypersensitivity pneumonitis

Margaret Salisbury, MD

CTD-ILD: Treatment and management

Robert Hallowell, MD

PH-ILD: Diagnosis and treatment options

Steven Nathan, MD

Panel discussion / Q&A Lunch: Noon - 1:15 p.m.

When your patients progress

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

Christopher King, MD Toby Maher, MD, PhD Kathleen O. Lindell, PhD, RN

Panel discussion / Q&A Afternoon break: 2:15 p.m. - 2:30 p.m.

How the PFF can help you

Multidisciplinary Discussion (MDD)

PFF Registry: What you need to know and why it’s important

Kevin Flaherty, MD, MS

The PFF Care Center Network: How you can collaborate with a CCN site

Sonye Danoff, MD, PhD

This MDD will present interesting cases and include an interactive discussion with a live Q&A

CHAIR: Daniel Marinescu, MD, MHSc; Leigh Minuk, MD; Amanda Grant-Orser, MBBCh, MD; Kerri Aronson, MD, MS

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12:00 p.m. - 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, BASHSA, 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 patients

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MPR-US-102816 (9/23).

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.

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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.

Have questions or need help?

Look for one of our wayfinders! You can find volunteers throughout the conference who can help answer your questions.

7:00 a.m. - 7:45 a.m.

PH-ILD: Making the case for early detection Location: Amarante 2 & 3

This is a closed session for healthcare providers only.

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.

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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. - 12:00 p.m.

Disparities in ILD Location: Mediterranean 4-5 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

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10:30 a.m. - 12:00 p.m.

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. - 12:00 p.m.

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

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10:30 a.m. - 12:00 p.m.

ROUNDTABLES: Autoimmune ILDs, hypersensitivity pneumonitis, and unclassifiable ILD Location: Mediterranean 3 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.

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1:30 p.m. - 3:00 p.m.

Use of genetics in ILD Location: Mediterranean 4-5 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

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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: Mediterranean4-5 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

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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

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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.

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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.

Veteran’s 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.

Clinical trials: Accelerating finding a cure 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

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10:30 a.m. - 12:00 p.m.

Reviewing progress: Research in the pipeline Location: Mediterranean 4-5 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. - 12:00 p.m.

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

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10:30 a.m. - 12:00 p.m.

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. - 12:00 p.m.

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.

The PFF does not endorse the companies or its trials, and views expressed during the event may not reflect the views of the PFF. 18

1:30 p.m. - 3:00 p.m.

Global view of ILD Location: Mediterranean 4-5 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 ILD 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

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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

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3:30 p.m. - 5:00 p.m.

Roundtable #1: Understanding and communicating hospice and palliative care options Location: Mediterranean 4-5 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

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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

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Thank you to the PFF Summit Program Organizing Committee!

Ann Lucas Patricia Sime, MD Tracy Luckhardt, MD Zoe D. Bubany, MBA Erica Farrand, MD Jose Herazo-Maya, MD Renee Bergtold, MS, RRT-RPFT Deji Adegunsoye, MD, PhD Darlene Cochran Mario Larrea Erin Mahoney, ANP-BC Laura Devitt Kate Gates, MSc Seth Klein Jessica Shore, PhD, RN Susan Jacobs, RN, MS Andy Limper, MD Heather Kagel Joe Lasky, MD Gillian Goobie, MD, PhD Amy Case, MD Sonye Danoff, MD, PhD Joyce Lee, MD, MS Kevin Flaherty, MD

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Welcome to

844.TalkPFF

pffsummit@ pulmonaryfibrosis.org

230 East Ohio Street, Suite 500 Chicago, Illinois 60611

Updated on November 7, 2023