Pulmonary Fibrosis Warriors

The diagnosis of idiopathic pulmonary fibrosis (IPF) is often devastating. Many IPF patients have never heard of the condition and are alarmed by Internet statements that highlight the bleak prognosis, often quoting data on life expectancy prior to the anti-fibrotic era. It has recently been shown that Internet information on IPF is often highly inaccurate and this problem is exacerbated by the volume of information that is needed if IPF patients are to understand their condition. Ready access to expert IPF centers is not always achievable and may, in any case, fail to address anxiety, stress and loneliness due to uncertainty about the future. Face-to-face support group meetings (Zoom meetings during COVID-19) have a crucial role in helping to meet this need but are not always accessible.

In 2014, our founder, Bill Vick, realized that there were no support groups for pulmonary fibrosis patients that were given the support and information that patients needed to survive and thrive. Pulmonary fibrosis is considered a rare but deadly disease with no cure. Bill was an elite athlete and began to see how the best new therapies, medicines, fitness, and other lifestyle changes, helped him thrive in spite of his disease. Other patients and health care providers began to contact Bill about what he was doing and discussing other options to improve pulmonary functioning for patients. Bill created a website, Facebook page, bi-monthly meetings for anyone to attend in person or virtually featuring outstanding pulmonologists, physical therapists, psychologists, etc. who provided current information about treatments for pulmonary fibrosis. We started with 2 members, and are now the largest patient-to-patient support group in the world.

Our Needs

We are overwhelmed with the amount of growth we are experiencing just in North Texas. Our support group meetings in Dallas now have close to 75 members attending, and our Facebook page (where we post volumes of information about pulmonary fibrosis) is being followed by over to 2,000 people. Our message of hope is resounding in the pulmonary fibrosis community. We need more staffing, media expertise, and technical support to continue our mission. People with pulmonary fibrosis have been an overlooked group. We need to raise funds that will allow us to reach every pulmonary fibrosis patient in North Texas.