Our story

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
2009

… 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!

Many thanks,

Kristan Knoble Rice
Executive Director, IPF Foundation

Our mission

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?
The Idiopathic Pulmonary Fibrosis Foundation is a volunteer organization dedicated to saving lives through medical research and educating the public about the need for more research and clinical trials. We’re bringing much-needed funding to a disease that’s under recognized and under-studied.
How do you decide what research to support?
Most research on IPF has looked for a genetic cause, and relatively little research has been done on the topic of the microbiome or bacteria and viruses as significant risk factors for IPF. Accumulating evidence points to strong associations between bacteria and viruses and IPF. We believe answers and more questions will come from the big data resulting from the CleanUP IPF trial. We will continue to identify the most promising research to accelerate pulmonary fibrosis cures. However, more research and funding is needed.
What percentage of funds raised goes to directly to research?
We will direct 100% of your online donation directly to the CleanUp IPF trial.
Why is it important to support the CleanUP IPF trial now?
Timing! The sooner we complete the trial using antibiotics to treat IPF patients, the sooner we will discover answers. The CleanUP IPF team is taking advantage of what is being called an exceptional scientific moment, using innovative and cutting-edge technology to look deeper than ever before – enabling precision testing at the molecular level. Our investigators will also look wide and longitudinally, collecting an unprecedented amount of data, allowing identification of statistical patterns and identifying changes in the lung microbiome before and after antibiotics to better understand the progression of IPF. By donating or participating in the CleanUP IPF trial, you will be making a real difference in our understanding of the disease. 
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?
We are here with a singular purpose – to support medical research to identify causes and cures to end pulmonary fibrosis. We are currently fundraising and advocating for the CleanUp IPF trial, which includes many of the same talented investigators sitting on the medical and scientific boards of the Pulmonary Fibrosis Foundation. We hope to raise enough funding to allow interested and qualified medical centers, investigators, and their patients to have an opportunity to participate in the CleanUP IPF trial.

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.”