Talking with the Pulmonary Fibrosis Foundation CEO, part 1

First in a series.

Shortly after I learned I had idiopathic pulmonary fibrosis (IPF) in January 2017, I came to rely on the Pulmonary Fibrosis Foundation (PFF) as a reliable source of information. That relationship continues today, more than four years after my bilateral lung transplant in 2021.

I recently interviewed Scott Staszak, the PFF’s current president and CEO, via Zoom. I’ll share what I learned from him in columns this month, all in recognition of Pulmonary Fibrosis Awareness Month.

Staszak and I met in 2019, at that year’s PFF Summit in San Antonio. Now, almost six years later, I feel like I’ve had a front-row seat to watch his professional growth and the foundation’s development over time.

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He joined the PFF in January 2011 as its chief financial officer at a time when the organization, while established, wanted to  “move … forward and do more.” Before then, he said, he was “unaware of pulmonary fibrosis.”

Fast forward to July 2014. During a phone call with his mother, Bonnie Blaske, she mentioned — nonchalantly, he said — that she’d been prescribed oxygen. That’s when he learned she’d been diagnosed with IPF, which made his work more personal. A mere 15 months following her diagnosis, his mother died.

“What I learned from that was seeing how the disease impacts the patient and the decline in health and how debilitating it can be, the mental anguish that someone can feel because they’re losing control,” Staszak said. “And then those around them who don’t understand what’s happening, they don’t know how to help this person who they love. It just can be devastating to the whole family structure and friends around them.

“And so I’ve tried to take that negative experience that happened with my mother and my family and use that to inform how I engage with the community that we serve,” he said.

When Staszak became the PFF’s chief financial officer, the foundation had about seven employees with an annual budget of $1.2 million, he said. Today, he told me, that has grown to about 35 employees with an annual budget between $11 and $12 million. He eventually became the chief operating officer before assuming his current position in 2024.

While he didn’t name every member of the foundation for praise, he did cite two: Amy Case, who’s worked with the foundation since 2020 and is now the chief medical officer, and Kate Gates, who’s spent almost 10 years with the foundation and is now the chief operating officer. The relatively long tenures of the staff have contributed to its “positive growth trajectory,” he said.

“It’s important to me personally to create a culture at the organization where we allow people to have that career growth because everyone faces that through their journey, and I want to be the kind of organization that people want to stay working at,” he said.

25 years and counting

This year’s awareness month includes special recognition for the foundation’s 25th year. Incorporated on Sept. 6, 2000, the PFF has accomplished much — but until there’s a cure, Staszak said, there’s much left to do. Still, he highlighted several accomplishments in the fight against the disease:

• The PFF has awarded $7 million in research grants. “These are smaller awards, and they’re kind of what you would call bridge grants, or they’re career launches,” he said. The PFF researched those who received the awards and learned that they “went on to acquire $306 million of subsequent funding on the same research topics.”
• There have been studies of 157 investigational therapies in the U.S. for PF and other interstitial lung diseases.
• There are 137 PF support groups in 37 states and 13 international groups.
• The PFF’s pilot program of care centers began in 2013 with nine sites. Today, there are 85 centers in 39 states.
• The first PFF Summit was held in 2011, with the biennial gathering continuing in odd-numbered years. The numbers of attendees and poster presenters have grown, he said; in fact, this year’s summit in November will host the event’s largest ever number of poster presentations.

The PFF created a video recognizing not only the awareness month but also highlighting the foundation’s many accomplishments in its 25 years.

Next week I’ll share more of my interview with Staszak and the ways the foundation is working to help all of us 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.