5 nights in Chicago and a 5-year strategic plan for PF

The Pulmonary Fibrosis Foundation (PFF) Summit 2025 began for me with a nonstop flight from Washington, D.C., to Chicago during the longest government shutdown in the history of the U.S. I was resolved to be in Chicago for the summit, so I had backup plans that included taking the Amtrak train or driving 11 hours.

I arrived before the start of the summit to participate in an all-day meeting related to clinical trials and their endpoints. My role was to be the patient’s voice. Two other patients and I shared our perspectives on clinical trials.

I began participating in research, including clinical trials for investigational new drugs, shortly after my diagnosis of idiopathic pulmonary fibrosis in January 2017. There is no stronger proof that those involved in research, pharmaceutical companies, every type of medical profession, and the PFF want patient involvement in their work.

According to PFF President and CEO Scott Staszak, more than 1,000 people from across the pulmonary fibrosis (PF) community registered to attend this year’s summit, which kicked off Nov. 13. Early that first morning, as I walked through the conference hotel and ballrooms, there was a lot of activity. People were arriving for registration. Vendors and folks from the PFF were busy setting up their displays.

This year, the summit reached a significant milestone, celebrating the PFF’s 25th anniversary.

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Staszak and Wayne T. Pan, chair of the PFF board of directors, shared the organization’s new five-year strategic plan — titled “The PFF Is ME” — at the Dine and Delight Networking Night. It is a collaborative product of more than 350 members from across the PF community working with the PFF staff to craft a road map for the next five years.

The plan comprises four priorities.

• Accelerate research: Advance discovery through the PFF Registry, targeted funding, and partnerships that speed ideas from lab to clinic.
• Expand access to expert care: Grow referral pathways and care center capacity to enable more people to reach specialists, clinical trials, and trusted resources sooner.
• Improve the lives of patients right now: Deliver clear education, practical tools, and support services that help families navigate PF/interstitial lung disease today.
• Bring the community together: Elevate the patient and caregiver voice, strengthen peer connections, and mobilize advocates nationwide.

I was also able to see old friends from across the PF community and meet some new friends in person. Much of the community comes to know each other virtually, and meeting in person at events like this is invaluable to me.

I hope everyone who attended not only found value in networking with other patients, caregivers, and a wide variety of healthcare professionals, but also took advantage of the educational sessions.

If you attended the summit, I would love to hear from you in the comments below. What did you find to be the most valuable part of it? Do you see a sense of urgency in the strategic plan? I know when I leave the summit, I am energized, and that energy helps me make every breath count.

Note: I spoke with a senior Boehringer-Ingelheim representative regarding your questions about Jascayd (nerandomilast). Their corporate practice refers questions from a publication to the corporate media team. I am awaiting a response.

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.