Every September during Pulmonary Fibrosis Awareness Month (PFAM), my family packs up and heads north to the Mogollon Rim near Payson, Arizona—a place my parents loved to camp—for our annual Pulmonary Fibrosis Foundation (PFF) walk. For us, it feels less like a walk and more like a hike. It’s cooler there than in the Phoenix desert, with tall pines and a creek running beside the trail. We go for the weekend, wear our matching shirts, hand out bracelets and flyers about pulmonary fibrosis (PF), and talk to as many hikers as we can. It’s our tradition, our tribute, and our way of keeping my mom’s memory alive.

We call ourselves “Grandma’s Outlaws.” The name came from my mom—she used to jokingly call her grandkids “the little outlaws.” She loved being a mother, grandmother, and great-grandmother, and she cherished it all—chaos included. Now, our walk team includes family traveling from two different states to honor her by raising awareness for PF, the disease that took her from us.

The walk is a lot of fun for our family, even though it's rooted in something quite painful. We enjoy a picnic, we laugh, we play in the creek, but most of all we remember her. The kids are the stars—they love handing out wristbands from the Pulmonary Fibrosis Foundation and getting people talking. Every person we meet, every conversation we start, is another chance to spread awareness and maybe make a difference for someone else.

Our journey with the Pulmonary Fibrosis Foundation began back in 2018. My mom was diagnosed with PF in 2014, but by 2017, she wasn’t doing well—and in 2018 we were desperate for help. That’s when I found the PFF website. Through the Foundation, and with my sister’s help, we connected with a PFF Care Center and a new care team that specialized in PF. That changed everything. They understood the disease. They had answers. Thanks to them, and by the grace of God, we had another three precious years with my mom. She passed away in 2021, but those extra years were a gift we’ll always be grateful for.

After losing her, I wanted to get involved. I started by becoming an advocate and participating in PFF Hill Day, then I became a PFF Ambassador. Volunteering helped me turn my grief into action. It gave me purpose. And it gave our family a way to channel our love for my mom into something that could help others.

Pulmonary fibrosis is a terminal disease. Before my mom’s diagnosis, I had never even heard of PF. That’s why awareness matters so much. Because the more people know about PF, the more support, research, and resources we can build. Awareness can save time. It can save lives.

And getting involved is easier than you might think.

We started small. For example, we installed blue porch light bulbs during PF Awareness Month in September and let neighbors ask about them. I share information on social media. I talk about PF in everyday conversations. The PFF makes it easy to take action, whether it’s texting a friend, posting a link, or writing to elected officials about the Supplemental Oxygen Access Reform (SOAR) Act. When you’re involved with the Foundation, you’re never doing it alone.

We’ll be back up on the Rim again this year, the weekend of September 13, just a week before the PFF National Walk Day, when people fundraise and walk in their neighborhoods and parks across the U.S. We’ll wear our shirts, hand out bracelets, and tell my mom’s story. Because we don’t want anyone else to go through what we did without support. We want people to know there’s help out there—and hope.

We are Grandma’s Outlaws, and we walk to keep her memory alive and to fight for a future without PF.

About the Pulmonary Fibrosis Foundation
At the Pulmonary Fibrosis Foundation, we are dedicated to making a difference in the lives of those affected by pulmonary fibrosis (PF), a form of interstitial lung disease (ILD). Pulmonary fibrosis is a process that causes lung scarring, in which fibrotic tissue blocks the movement of oxygen from inside the tiny air sacs in the lungs into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause people with pulmonary fibrosis to feel short of breath, particularly when walking and exercising. Over 250,000 Americans are living with PF today. Approximately 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from idiopathic pulmonary fibrosis (IPF) each year.
As the largest organization committed to raising awareness and providing support, our mission is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.