The Pulmonary Fibrosis Foundation will celebrate 25 years at summit

In just over a month, one of the largest gatherings of pulmonary fibrosis (PF) patients, caregivers, and health professionals will take place in Chicago, at the Pulmonary Fibrosis Foundation (PFF) Summit 2025.

My idiopathic pulmonary fibrosis (IPF) diagnosis in January 2017 thrust my wife, Susan, and me into a whole new world where we didn’t know anyone. It was the first time we’d heard of IPF. As we searched for reputable information about IPF, we discovered the Pulmonary Fibrosis Foundation.

It wasn’t the first source of PF information we found, and even after we discovered the PFF website, Susan continued to search for more information, which caused her great distress. At times, I’d walk into the room and she would burst into tears. So we decided that PFF would be our primary source of information about PF.

I missed the PFF Summit in 2017 because I’d just stopped working and was on disability. I had weekly appointments with my healthcare team, and my focus at the time was mostly medical testing. I attended my first summit two years later, in 2019.

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Finally, I’m back to a Pulmonary Fibrosis Foundation Summit

Finding my people

A few specific moments in my life are etched into my memory, such as the day I walked into my first PFF Summit. Patients, caregivers, and every type of medical professional were there. I quickly discovered that these are my people.

The first PFF Summit was held in 2011 and then on odd-numbered years since then. In 2021, during the COVID-19 pandemic, the summit went virtual, which is how I attended that year, just four months after my bilateral lung transplant.

I recently chatted with PFF President and CEO Scott Staszak, who noted that the summit has grown “not just in how many people attend, but also in the number of poster presenters.” He said that this year, the PFF has received the largest number of poster submissions ever, which is “a good indicator that more and more people continue to invest in research in this disease space.”

Attendees can view these poster presentations and talk with the researchers behind them, which is what I did the first year I attended. I made a point to thank them for their work.

The theme of this year’s program is “25 Years Together: Honoring the Past, Building on the Present, Innovating for the Future,” a nod to the PFF’s 25th anniversary. It will have something for everyone.

The summit, from Nov. 13-15, kicks off with an introduction to the PFF, a welcome reception, and an opportunity to browse poster presentations. On the second and third days, attendees can explore sessions that pique their interest, including ones aimed at both patients and caregivers.

Whether you’re a patient, caregiver, or healthcare worker, you’re bound to meet others who are on a similar journey as yours. The first year I attended, I shared a common bond with the people I met in networking events, on coffee breaks, and at dinner. Some of them have since passed due to this disease. I remain in contact with many others to this day.

The summit in 2023 was like a reunion of the people I met four years earlier, those I had met virtually in support groups, and even some who read my column here at Pulmonary Fibrosis News. If you plan to attend this year, please say hello.

What I’ve experienced and learned at past summits has been invaluable to me and my growth during this IPF journey. It’s one of the ways I make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.