Pulmonary Fibrosis Association

We spoke to Denise Breeden with the Pulmonary Fibrosis Association to go into detail over what it is their
charity does for the patients with PF and their families. The Pulmonary Fibrosis Association (PFA) is a non-profit,
nationwide charity who provides education and oxygen equipment to people who have been diagnosed with PF.
Denise Breeden started attending support group meetings in 2012 after her father was diagnosed with PF and is
now the office manager at the PFA.

When was the association founded and who are the founders?

“The Pulmonary Fibrosis Association, Inc. started out as a Houston area support group for Pulmonary Fibrosis (PF)
patients, founded in 2003 by Jan Orndorff with the help of her husband, John.  As time went on and Jan saw many
PF patients across the country who could not afford their supplemental oxygen (the only treatment at the time for
PF) due to loss of jobs & health insurance, she decided to raise money for their assistance and the Pulmonary
Fibrosis Association of Texas, Inc. was founded and incorporated as a 501(c)(3) charity in August 2007.
Unfortunately, we lost Jan Orndorff, after 14 years from her diagnosis, in July of 2016 to complications from PF and
side effects from some medications. John Orndorff is still involved with the support group and the
charity organization and continues to carry on her legacy of helping PF patients who cannot afford to pay for the
very air that they breathe.”

How and why was the Pulmonary Fibrosis Association started?

“In 2002, Jan Orndorff was diagnosed with Idiopathic (cause is unknown) Pulmonary Fibrosis (IPF) at the young age
of 50.  When she started looking into the disease, she couldn’t find much information or outside support, or
people similarly diagnosed. She eventually met another patient in 2003, they began to meet to share information,
and the support group was born.  As time went on, Jan and her husband, John, saw that although the only
treatment for PF at the time was supplemental oxygen (often with heavy steroid medication-not a cure) or
possible lung transplantation, there were PF patients who could not afford even the life-prolonging treatment
of oxygen.  So in 2007, John, who is an attorney, and Jan formed the corporation and filed the application for a
501(c)(3) nonprofit charity as the Pulmonary Fibrosis Association of Texas Inc., so they could start raising money to
assist those pulmonary fibrosis patients that are under-insured or un-insured, yet acutely in need of supplemental
oxygen and related medical equipment.  Ever since then, this has been one of the main missions and ongoing
functions of the (now named) Pulmonary Fibrosis Association (PFA). Even though we are incorporated in Texas, we
assist patients all over the United States, and in fact, in other countries as well.  We also still run the Houston
Support group, and work to promote public education and awareness of the disease, its effects and the need for
early detection and treatment.  This education includes patients and medical professionals, as well as the general
public.”

What is your role at PFA?

“I joined the PFA in late 2012 as simply a support group member, when my father was diagnosed with Pulmonary
Fibrosis.  Like many PF patients and their families, we had never heard of the disease and were at a loss for
information.  After attending a few support group meetings and seeing how valuable it was, I volunteered to help
out in the office with any administrative tasks that were needed.  Over time, I became the “office manager” and I
oversee the monthly Houston support group meetings, field all requests for patient assistance (facilitating the
application and approval process), answer calls and emails, manage the website (www.pfassociation.org), manage
the books for the organization, and other miscellaneous tasks.”

What does PFA need most from the community?

“I would say that our biggest needs are monetary donations and donations of small, portable oxygen
concentrators.  There are some patients who cannot afford the basic supplemental oxygen that they need at
home (home O2 concentrators), so monetary donations allow us to provide this for them by purchase or monthly
rental.  There are many patients that are unable to leave their homes because they are tied to their home oxygen
concentrator, or it is too cumbersome (or they are too weakened) to drag large tanks with them.  They cannot
survive without the oxygen they need, and do not have the funds to obtain a more workable solution.

Portable oxygen concentrators (either that are donated to us or that we purchase with donated funds) are an excellent
solution for these patients and it helps increase their independence and lets them live their best life possible,
without the constant anxiety over the source and cost for their next day’s breathing process.”

What is PFA’s vision for the future?

“We would love to see a day when a cure is found, and Pulmonary Fibrosis no longer exists, and everyone can
breathe freely.  But until that time, we will strive to ensure that no patient goes without supplemental oxygen due
to lack of financial means, and to ensure that no PF patient feels alone in their journey. We continue the Support
Group because, although not a cure, it was recognized and listed as a recommended part of the treatment for the
mental well-being of their PF patients by the Houston Methodist Hospital Transplant department and doctors.”

We hope you enjoyed our interview with Ms. Breeden as much as we did. If you would like to donate your
concentrator to the PFA, call us at 800.375.6060 to find out more information.

You can also contact the Pulmonary Fibrosis Association directly by visiting www.pfassociation.org