About the PFA

The Mission of the PFA is to use carefully designed, creatively effective, and thoughtfully executed patient-centered advocacy to help speed the discovery and delivery of an effective treatment for pulmonary fibrosis.

Pulmonary Fibrosis Advocates is with one goal: to use positive and effective advocacy to speed delivery of effective treatments by giving voices to the voiceless for Pulmonary Fibrosis.

PF is more prevalent than Lou Gehrig’s Disease.

PF is more prevalent than Cystic Fibrosis.

PF is as prevalent as Breast Cancer.

And yet, there is inadequate government research funding. No widespread public awareness. No breakthrough research. And no FDA-approved treatment.

Pulmonary Fibrosis Advocates lobbies on behalf of all PF patients, family members, caregivers, clinicians and researchers.
•   To influence federal legislation and administrative agency actions important to the PF community.
•   To increase government research (NIH/NHLB1) and drug approval/support (FDA).
•   To raise funds for research.
•   To dramatically increase public awareness for PF.
•   To make a positive and hopeful difference in the lives of current and future PF patients.

We need your help. Please voice your support of PF Advocates by contacting your members of the U.S. Congress. PF patients around the country and the world depend on our involvement.

Paul Fogelberg
Patient Advocate
paul@pfadvocates.org
952.933.9990
800.229.2531

Board of Directors:

Fogelberg

Paul A. Fogelberg
Patient-Advocate & Director
Pulmonary Fibrosis Advocates
paul@pfadvocates.org
President
The Professional Education Group
  Wayzata, MN
paul@proedgroup.com

Baird
Brian Baird, Ph. D.
Former President, Antioch University-Seattle
Former United States Representative
  Edmonds, WA

Cotzee
J. Chris Coetzee, MD

Minnesota Orthopedic Sports Medicine Institute at Twin Cities Orthopedics
  Edina MN

Goodrum
Catherine Goodrum
The Trilogy Group
  Fairfax, VA

Graham
Arianne Graham
Program Director Client Services & Strategic Initiatives
PatientsLikeMe, Inc.
Cambridge, MA

Jacobson
Noah Jacobson
AVP Federal Relations – AT&T
  Washington D.C.

Perlman
David Perlman, MD
University of Minnesota
  Minneapolis, MN

Sandler
Froma Sandler
Lisa Sandler Spaeth Memorial PF Research Fund
Johns Hopkins University
  Bethesda, MD

Shreve
Mark A. Shreve
Founder & CEO
Coalition for Pulmonary Fibrosis (2001-2009);
Senior Advisor
Pulmonary Fibrosis Foundation (2010-2011)
  Titusville, NJ

Vangsness
C. Thomas Vangsness, MD
University of Southern California
  Los Angeles, CA

Partners:

  • Research!America
  • NORD
  • Rally For Medical Research
  • Patients Like Me
  • Eurodis
  • ELF
  • Rare Connect
  • PF Events