PFF Summit 2017 Patient Sessions

Thursday > Session

Patients and Caregivers: Intro to the PFF, Your Call to Action, and Understanding the Basics of Research

Kevin Flaherty,  MD, MS: Introduction of the PFF and the Care Center Network VIEW SLIDES

Hal Collard, MD, John Morthanos, and David McNinch: Research 101: Understanding the process, terminology, definitions, and how a drug is brought to market  VIEW SLIDES

Kate Gates, Anne Dimmock, Lisa Boyd, Dot Delarosa, Barbara Murphy: Need Meets Action Part I: Overview of volunteering at the PFF

Amanda Miller: Need Meets Action Part II: Overview of effective fundraising VIEW SLIDES 

Friday > Sessions

Keynote Address

Jim Kiley, : National Heart, Lung, and Blood Institute (NHLBI) support for personalized therapy in lung disease VIEW SLIDES

Plenary Session I: Promise of Genetics and Personalized Medicine in PF

LEADERS: Bill Schmidt and Greg Cosgrove, MD

Jeff Trent: State-of-the-art approaches to genetic discovery in complex disease VIEW SLIDES

Jim Loyd, MD: Current status of clinical genetic testing in ILD VIEW SLIDES

Janet Talbert MS, CGC: A genetic counselor's perspective: Impact of genetic information for patients and families VIEW SLIDES   


Kidbilly Music, Presented by Genentech
Kidbilly  Perspectives from All: Songwriting for team-building, networking, and emotional healing
Understanding ILD and IPF

LEADERS: Amanda Miller

Kristin Highland, MD: Part I: Overview of ILD, IPF, and connective tissue disease  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

Mary Beth Scholand, MD: Part II: Understanding your test results: HRCT, 6MWT, PFTs, and oximetry  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

Quality of Life: Next Steps

LEADER: Amanda Miller

Josh Mooney, MD, MS: Part I: Evaluation for lung transplantation VIEW SLIDES

Linda Manning, MD: Part II: Using mindfulness for stress management in chronic disease VIEW SLIDES

Wendi Mason, MSN: Part III: Treatment of cough VIEW SLIDES


Call to Action Part I

LEADER: Kate Gates

Kathleen O. Lindell, , RN,  John Mulder: Transitioning after the loss of a loved one, after a transplant


Kate Gates: How to participate in legislative advocacy  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

Oxygen Therapy, Pulmonary Rehabilitation, and Symptom Management

LEADER: Heather Kundert


Susan Jacobs, RN, MS: Part I: Living with oxygen therapy and PF; Overview of various types of POCs, compressed gas units, trans-fill systems, and backpacks; How can I be active and travel with O2 (MedJet and other emergency travel services)?  SLIDES AND WEBINAR ARE FORTHCOMING


Trina Limberg, BS, RRT: Part II: Pulmonary rehab: What is it and how can it help me?  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME


Wendi Mason, MSN: Part III: Symptom management: , dyspnea, and fatigue SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

What's in the Pipeline? Current Clinical Trials, Potential Therapies, and How the Process Works

LEADER: Greg Cosgrove, MD

Bill Bradford, MD, : Part I: Understanding how clinical trials work and the therapeutic process to bring a drug to market  VIEW SLIDES


Greg Cosgrove, MD: Part II: Current clinical drug trials in the pipeline for IPF and PF, and an overview of potential therapies moving forward  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

Call to Action Part II: How to Host a Fundraising Event

LEADER: Seth Klein

        Amy Kozyra: How to host a fundraising event VIEW SLIDES

Saturday > Sessions

Keynote Address

Gordon R. Bernard, MD: Re-thinking clinical trials in PF | VIEW SLIDES


Plenary Session and Panel Discussion: Maximizing the Impact of Available Therapies in IPF

LEADERS: Lisa Lancaster, MD

Kevin Flaherty, MD, MS: PFF Care Center Networks and PFF Patient Registry| VIEW SLIDES


Jason Martin, MD: Improving care for PF patients and adherence to treatment plans: A physician family member's perspective | VIEW SLIDES


PANEL: Carolyn Adams-Duda, Kevin Flaherty, Jason Martin, Gregory Cosgrove, Maryluz Fuentes


Basics of Genetics and What We Know About Stem Cell Therapy

LEADER: Heather Kundert

Jim Loyd, MD: Part I: Genetics 101 in IPF VIEW SLIDES

Sonye Danoff, MD: Part II: Stem cell therapies and ; What is stem cell therapy and what is it approved for? Stem cell centers in the community VIEW SLIDES

Marilyn Glassberg, MD: Part III: Clinical trials with stem cells for ILD VIEW SLIDES

Q&A Panel

Diagnosis and Treatment of Comorbidities and Approved Therapies for IPF   

LEADER: Mary Kiener

Joyce Lee, MD: Part I: Overview of pirfenidone and nintedanib        VIEW SLIDES

Wendi Mason, MSN: Part II: Adherence to treatment plans: Safety and management of side effects with pirfenidone and nintedanib   VIEW SLIDES

Anne Turner, RN, BSN: Part III: How to qualify for reduced payment plans VIEW SLIDES

Roundtable Discussions   

LEADER: Kate Gates

John Mulder: Caregiver burnout VIEW SLIDES

David Lederer, MD, and Michele Peters: How to prepare for an effective clinical visit with your doctor

Jim Jackson, : Depression and anxiety in chronic disease VIEW SLIDES

Kathleen O. Lindell, , RN: Palliative and hospice care  VIEW SLIDES

Kate Gates: How to participate in legislative advocacy VIEW SLIDES