PFF Education Symposium

Friday, November 8

10:30 a.m. – 11:45 a.m.  |  Pulmonary Fibrosis 101: Fact versus Fiction

Speakers: PFF Medical Team: Amy Hajari Case, MD, FCCP - PFF Interim Chief Medical Officer; Sonye Danoff, MD, PhD - Senior Medical Advisor, PFF Care Center Network; Kevin Flaherty, MD, MS - Steering Committee Chair, PFF Registry; Joyce Lee, MD, MS - Senior Medical Advisor, Research and Health Care Quality

This interactive session will provide a solid foundation on pulmonary fibrosis for newly diagnosed patients, patients living with pulmonary fibrosis, caregivers, family members, and others. Disease facts will be shared and explained while myths and misconceptions are debunked.


11:45 a.m. – 12:00 p.m.    |   Break


12:00 p.m. – 1:00 p.m.    |   Clinical Trials Innovation Series

Hear from industry representatives and learn about current research studies that are underway to help find new treatments for pulmonary fibrosis. Different trials will be presented each day, so make sure to join on both Thursday and Friday.


1:00 p.m. – 1:30 p.m.     |   Break


1:30 p.m. – 2:30 p.m.     |   How Storytelling Improves Health Outcomes: The Power of Your Story

Speaker: David Weill, MD, Organ Transplant Specialist & Healthcare Consultant, Author of Exhale and All That Really Matters

Patients, their family members, and clinicians make up the “healthcare triad” and their combined experiences impact bedside care. This session will provide an inside look at the world of high-stakes medicine as well as empower patients and their loved ones to share their story with their healthcare providers in order to receive more personalized care.


1:30 p.m. – 2:30 p.m.     |   PF Treatment Journey: Current Research Studies and Approved Medications

Speaker: Sydney Montesi, MD; Clinical Investigator, Assistant Professor Pulmonary, Mass General Research Institute; Assistant Professor of Medicine Harvard Medical School; Assistant Physician Medicine-Pulmonary and Critical Care Medicine, Massachusetts General Hospital

In addition to clinical trials, there are many other types of research projects underway in pulmonary fibrosis. This session will discuss research that is not studying medications. It will also provide an overview of the FDA approved medications for pulmonary fibrosis.


2:30 p.m. – 2:45 p.m.     |   Break


2:45 p.m. – 3:45 p.m.     |   Health Maintenance with PF: Routine Testing, Symptom Management, and the Importance of Sleep

Speaker: Mary Beth Jamison, Nurse Practitioner, Interstitial Lung Disease and Sleep Medicine,
Banner University Medical Center Tucson

Once diagnosed, pulmonary fibrosis patients may feel overwhelmed with navigating their upcoming appointments while managing their symptoms and wellbeing. This session will explain what tests are performed and at what intervals while also discussing managing symptoms like cough, using oxygen as prescribed, attending pulmonary rehabilitation, and getting enough rest to support health and wellbeing.



2:45 p.m. – 3:45 p.m.     |   PF Caregiving: What to Do and Where to Get Help

Speakers: Lanier O’Hare, MSN, CRNP, Nurse Practitioner - Sarcoidosis and ILD Clinics Interstitial Lung Disease Program Department of Medicine University of Alabama at Birmingham

Jennifer Simokaitis, Manager, PFF Help Center, Pulmonary Fibrosis Foundation

Caring for someone living with pulmonary fibrosis is a substantial responsibility and can be both a comfort and a challenge to spouses, partners, family members, and friends. Caregivers take on many different roles and tasks, many of which are new to them. This session will provide an overview of caregiving, common concerns and challenges, and the emotional toll that caregivers may experience. It will also include resources for caregivers to find assistance and support in their community.


3:45 p.m. – 4:00 p.m.     |   Break


4:00 p.m. – 5:00 p.m.     |   Mix ‘N Mingle Networking Session

Join other members of the pulmonary fibrosis community for a relaxed networking session at the end of the day. This will be a wonderful opportunity to get to know others, share stories, and find comfort in a group of people with similar experiences. With attendees from across the country, there may be a chance of meeting someone in your area!