My father died of Idiopathic Pulmonary Fibrosis in 2014, causing me to begin a search for answers into this devastating progressive lung disease. Within three years, my mother was also diagnosed with IPF and died only months later.
My curiosity was piqued and my quest to learn about the disease took on more urgency. I had been told by physicians that IPF is a rare genetic disease and that the odds of both spouses having IPF are infinitesimal—that my parents are statistical outliers. I discovered accumulating evidence indicating a strong association between bacteria, viruses and IPF.
As IPF was destroying my dad’s life, he struggled with the disappointment that no cure existed, and he looked for a way to support research that could lead to a cure. Having spent his entire career as a hospital CEO, he understood the importance of discoveries through clinical trials. It was frustrating to him that he was unable to find an avenue for the public to easily donate directly to much needed studies. The lack of outlets to support IPF research was the impetus for our foundation.
Jim & Carmen Knoble
… the magnitude and impact on families grows exponentially when you multiply that by as many as 500,000 deaths every decade in the US alone. Yet I remain hopeful.
I am driven by a strong desire to save lives and am struck by the obvious need for more research funding. I don’t want anyone else to go through the profound loss our family has experienced. IPF has hit my family hard, but the magnitude and impact on families grows exponentially when you multiply that by as many as 500,000 deaths every decade in the US alone. Yet I remain hopeful.
Exciting new technological innovations are enabling the scientific community to make discoveries that were not possible until recently. With the leadership and foresight of our CleanUP IPF researchers, we are at a pivotal point in better understanding the role of the lung microbiome in the development of IPF. Dr. Jerry Eu, former Program Director-Immunology/Fibrosis at the NIH, wrote, ” If micro-organisms are triggering and/or sustaining the disease and we are able to figure this out, then a cure should be in sight.”
Now more than ever, we have an incredible opportunity to make a difference by supporting much needed clinical research. But we can only accomplish this work together. Please partner with us to end IPF!
Kristan Knoble Rice
Executive Director, IPF Foundation
We advocate and fundraise for the most promising research to accelerate cures to end idiopathic pulmonary fibrosis.
Our foundation supports the CleanUP IPF trial, an innovative research trial investigating antibiotics in IPF patients.
Frequently Asked Questions about IPF Foundation
What is your goal?
How do you decide what research to support?
What percentage of funds raised goes to directly to research?
Why is it important to support the CleanUP IPF trial now?
Why donate to the Idiopathic Pulmonary Fibrosis Foundation?
There are more than 50,000 deaths a year in the U.S. from IPF. As many Americans die from breast cancer yet there has been significantly less ongoing IPF research. It’s time to empower the IPF community to help find cures for this fatal disease.
What is the mailing address for IPF?
All physical mail can be sent to:
Idiopathic Pulmonary Fibrosis Foundation | 21301 S Tamiami Trl Ste 320 PMB 226 | Estero, FL 33928
Is there a cure for IPF?
Unfortunately, 50% of people diagnosed with IPF die within 2 years, and 80% die within 5 years. In fact, while there are drugs that may prolong the disease or delay severity of symptoms, IPF remains a fatal disease. While that’s a depressing statistic, our foundation is focusing on what can be done to better understand the causes of the disease and find cures.
How are we different from the Pulmonary Fibrosis Foundation? Why do you need a separate foundation?
The Pulmonary Fibrosis Foundation raises awareness and provides very important education and support for those living and working with pulmonary fibrosis.
Dr. Jerry Eu, former Program Director-Immunology/Fibrosis at the NIH, wrote, “If micro-organisms are triggering and/or sustaining the disease and we are able to figure this out, then a cure should be in sight.”