Working to bring the PF and broader ILD communities together

No one would voluntarily join the pulmonary fibrosis (PF) community. After all, who would want to be a part of the rare disease world?

When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, the idea of a disease-specific community seemed elusive. Most people I knew weren’t familiar with PF. However, as I began to share my diagnosis, I met other people who were living with the disease or who had lost a family member or close friend to it. I also learned that lung fibrosis, or scarring, is present in many other forms of interstitial lung disease (ILD).

My sense of community was soon bolstered by support groups and organizations such as the Pulmonary Fibrosis Foundation (PFF).

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A focus on community

The PFF’s 2025-2030 strategic plan, called “The PFF is ME,” charts a five-year path to improving the lives of everyone in our community. It is organized around four pillars that reinforce one another. The first focuses on accelerating PF research, while the second aims to expand access to expert care. The third pillar,  improving the lives of patients now, is an opportunity to get involved and help deliver the important messages of PF. Finally, the fourth pillar focuses on bringing the community together — not just those affected by PF, but the broader ILD community as well.

I recently had the opportunity to interview Seth Klein, the PFF’s chief development officer, via Zoom. Klein is responsible for fundraising and marketing activities that directly involve and impact the PF community.

Klein defined community, as it relates to this pillar, as more than just patients and their families. It also includes caregivers, transplant recipients, researchers, doctors, clinicians, and nurses. He explained that an increased focus on other ILDs has led not only to growth in the community’s size, but also to greater acceptance and understanding of all types of ILD.

Even after my bilateral lung transplant in July 2021, I remain a part of the PFF community. A transplant is not a cure but a non-drug treatment, and recipients have a great deal of valuable information to share.

Community-building initiatives

Two primary initiatives support this fourth strategic pillar: adding more PFF Walks and ensuring that people with all types of ILD feel welcome.

PFF Walks aren’t just important fundraisers; they also increase awareness in local communities and on social media. This year, seven walks will take place in major metropolitan areas, plus a virtual National Walk Day. The newest location is Tampa, Florida, on April 18.

According to Klein, Community Walks have also become increasingly popular. Unlike the seven official PFF Walks, these are grassroots efforts led by community members. Klein explained that the events are driven by the organizers’ desire to raise awareness in their own neighborhoods. He noted that the Tampa walk was a Community Walk last year.

The second initiative involves connecting ILD patients with the PFF’s resources, which cover the various types of PF as well as autoimmune-related ILDs, hypersensitivity pneumonitis, and other forms of ILD. The foundation is currently reviewing its website and educational materials to ensure that patients with all types of PF and ILD feel supported. This is to be completed during the first year of the strategic plan. In years two through five, the PFF plans to roll out additional language to make everyone feel welcome.

Other community-led events are limited only by your imagination. Klein said that bowling fundraisers, bake sales, and even letter-writing campaigns all build a stronger sense of community.

Klein told me he spends much of his time working on planned giving, another way people can support the foundation’s work and contribute to our community’s future. Including a gift in your trust or will is one way to contribute to future research.

You can expect me to continue following the progress of the PFF’s strategic plan. It is through this vision that we can see ourselves in the foundation’s work — a partnership where we can all contribute to 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.