The advocacy voice of PF patients, family members, caregivers, treating physicians & researchers
The PF Advocates are volunteers
who are dedicated to education and advocacy on behalf of PF patients, family members, caregivers, treating physicians, and researchers. We work with other Non-profit organizations* to influence legislation and administrative regulations that impact the broader PF community.
We also work with our pro bono (volunteer) law firm, Holland & Knight, to have a positive impact on federal issues of importance to the PF community. Holland & Knight has generously donated time, talent and unparalleled professional expertise to our collective education and advocacy efforts in Washington DC.
Presently, we are sharply focused on working to pass The Pulmonary Fibrosis Research Enhancement Act (PFREA) in the US Congress...Senate bill # S. 1350 and House of Representatives bill # HR 2505.
We welcome your inquiries, input, and most of all your active participation in this all-volunteer effort. Together, our voices can and will be heard. Please join us!
Questions? Call or write:
Pulmonary Fibrosis Advocates
12401 Minnetonka Boulevard, Suite 200
Minnetonka, MN 55305-3994
800.229.2531
Paul Fogelberg
The PF Advocates are organized as a tax-exempt 'social welfare' 501(c)(4) organization engaged solely in education and advocacy. We are, first and foremost, volunteers but we are not "funded" other than by the support of our fellow advocates and friends. We need you most as an active advocate for the PFREA legislation, but, if you are able, we could also use your financial support. However, note that donations to a 501(c)(4) organization do not qualify for an income tax deduction. 100% of donations are used for education and advocacy (there is no administrative overhead nor staff salaries). If you can help with a donation, please send it to:
Pulmonary Fibrosis Advocates
12401 Minnetonka Blvd., Ste. 202
Minnetonka MN 55305-3994
For credit card transactions, please call: 952.933.9990.
Brian Baird, Ph. D.
United States Representative, retired
Edmonds, WA
Timothy P.M. Whelan, MD
Medical Director of Lung Transplantation, Medical University of South Carolina
Charleston, SC
Jerome & Froma Sandler
Lisa Sandler Spaeth Memorial PF Research Fund, Johns Hopkins University
Bethesda, MD
C. Thomas Vangsness, MD
University of Southern California
Los Angeles, CA
Mark A. Shreve
Founder & CEO, Coalition for Pulmonary Fibrosis (2001-2009)
Senior Advisor, Pulmonary Fibrosis Foundation (2010-present)
Titusville, NJ
Paul A. Fogelberg
Patient-Advocate & Director, Pulmonary Fibrosis Advocates
President, The Professional Education Group
Minnetonka MN
Timothy P.M. Whelan, MD
Medical Director of Lung Transplantation
Medical University of South Carolina
Associate Professor of Medicine
Lawrence C. Mohr, MD
Professor of Medicine, Biometry & Epidemiology
Director of the Environmental Biosciences Program
Medical University of South Carolina
Joao de Andrade, MD
Associate Professor; Associate Director, Pulmonary Fellowship Program
Director, University of Alabama Interstitial Lung Disease Program -
UAB Health System
Richard Castrotta, MD
Professor of Internal Medicine
Pulmonary Division Director and Chairman-Elect of the Interfaculty Council at the
University of Texas Health Science Center at Houston
Chief of Pulmonary Medicine
Chairman of the Interstitial Ethics Committee
Medical Director of the Sleep Disorders Center at Memorial Hermann Hospital in
the Texas Medical Center
Richard.J.Castriotta@uth.tms.edu
Jesse Roman, MD
Professor and Chairman of the Department of Medicine
Distinguished University Scholar
University of Louisville, KY
Peter Bitterman, MD
Professor of Medicine
Vice Chairman of Research
Department of Medicine
University of Minnesota, Minneapolis
Kevin M. Chan, MD
Medical Director
Lung Transplantation
University of Michigan Health System
For additional information on Advocacy AND on Pulmonary Fibrosis (aka, Idiopathic Pulmonary Fibrosis) please see the following websites …
Advocacy Sites
Use the PFA’s on-line tool for writing to your United States Senators and/or Representative, simply click here.
Find my United States REPRESENTATIVE
(in the upper right hand corner of that page, enter your zip code)
The Pulmonary Fibrosis Research Enhancement Act (PFREA) - Bill Summary & Status
(Enter Senate bill # S. 1350 and/or House bill # 2505)
Basic Information Sites
National Heart Lung & Blood Institute ~ What Is Idiopathic Pulmonary Fibrosis
National Heart Lung & Blood Institute ~ Clinical Trials
Mayo Clinic ~ Pulmonary Fibrosis
Familial Pulmonary Fibrosis ~ National Jewish Health
Patient Education Sites / Organizations
Pulmonary Fibrosis Advocates – Minnetonka, MN
www.pfadvocates.org • 800.229.2531
NOTE: There are 76 pulmonary fibrosis Support Groups in 33 states.
Please call the PFA if you are interested in finding a Support Group in your area.
Pulmonary Fibrosis Foundation – Chicago, IL
www.pulmonaryfibrosis.org • 888.733.6741
Coalition for Pulmonary Fibrosis – Culver City, CA
www.coalitionforpf.org • 888.222.8541
