Our story . . .
Originally diagnosed with IPF in 2002, Jan Orndorff, supported by her husband John, began a long journey in her 14-year battle with Pulmonary Fibrosis (PF). Diagnosed with a terminal disease she had never heard of and whose cause is still unknown, Jan began the frustrating search for known treatments, reliable information, and support through other patients. Unable, at that time, to find much trustworthy information on the disease that affects about 200,000 patients in the United States, or to even find a few shared PF patient experiences through the internet, Jan did find two other local PF patients through the medical community.
The THREE PATIENTS HAD LUNCH, and relieved and comforted to find other people with the common challenges and experiences with PF, the initial area PF support group was born! In 2003 Jan’s vision of helping other PF patients cope with this disease led to her and John forming the Houston Area PF Support Group. This support group grew from the original 3 patients to an average monthly meeting of 15-25 participants and a mailing list of over 200. In 2021 (18 years later) it is still providing the precious gift of a place for patients and their caregivers/families (and even surviving caregivers) to turn to for sharing common experiences, emotions and challenges.
Then Jan began to learn of cases of PF patients being initially denied, or losing their supply of necessary supplemental oxygen prescribed by their doctors, usually paid for by insurance. PF patients eventually cannot stay employed due to failing health and lose their group health insurance (many are diagnosed before reaching Medicare age). Some of the consequences of simply not being able to afford the basic amount of oxygen necessary to function were sad and sometimes tragic. So, in 2007 John and Jan formed the Pulmonary Fibrosis Association, Inc., a 501(c)(3) Non-profit charity to assist under-funded or under-insured PF patients all across the United States in obtaining supplemental oxygen and related equipment (at times today, even helping overseas PF patients). The charity also assumed sponsorship of the Support Group and its related costs. All officers and members of the Board of Directors of the charity have always been/are unpaid volunteers.
Sadly, Jan lost her battle with PF in 2016, but John, with much help from their Daughter Jennifer and husband Chris, and their Son Ron and wife Aurelia, plus many other dedicated volunteers, have kept Jan’s mission alive. All 6 of Jan and John’s Grandchildren have lovingly helped with the charity’s fundraising, while adding youthful joy to the events. Because of the actions of many, the Support Group and Charity continue to make the lives of some PF patients a little less isolated, or their breathing a little easier.
Breathing is a basic function of life & shouldn't be restricted by a price tag.
Provide assistance primarily for obtaining prescribed supplemental oxygen and medical equipment to under-insured, non-insured and acutely ‘in need’ Pulmonary Fibrosis Patients; and
Promote public education and awareness of the disease, its effects and the need for early detection and treatment; and
Establish and promote an area PF Patient Support Group and helpline and to encourage formation of affiliated support groups in other cities, giving patients and their families face-to-face encouragement in their common battle with this disease through information sharing;
As funding allows, support medical research programs and other similar 501(c)(3) entities working for the discovery of the cause, treatment and cure of Pulmonary Fibrosis
To shine a light on pulmonary fibrosis through education and providing resources to help those affected.