You know how some conversations leave a mark on you—like, they quietly shift how you see things?
That’s exactly what happened when I sat down (virtually) with Deborah Jankowski, the founder of the CRPS Warriors Foundation, for an episode of Nonprofits Today. I didn’t expect it to hit so deep, but Deborah’s story? Her work? Her resilience? Let’s just say it stayed with me long after we hit “stop recording.”
Before we met, I barely knew what CRPS (Complex Regional Pain Syndrome) was. Now I can’t stop thinking about it. It’s a rare, often misdiagnosed condition sometimes referred to as the “suicide disease” because of how excruciating and relentless it is. Deborah lives with it. Full body. And still—still—she shows up every day to support others who are navigating the same pain.
What struck me was how she’s chosen to respond. She didn’t wait until life was “easier.” She didn’t wait to feel “ready.” She created something meaningful right in the middle of the hard. That takes a different kind of courage.
during nonprofit conversations, she opened up about:
- Building a nonprofit from her bed, during COVID, with the help of friends and sheer determination
- Why she structured her organization like a business—with departments and leaders—to reduce burnout and build sustainability
- How she empowers volunteers (many of whom also have CRPS) to lead in ways that support their growth and honor their limitations
- The heartbreaking reality of being denied treatment or support—and how her team still finds ways to care for each other, no matter what
We also talked about the very real challenges of funding, especially as their reach expands nationally and into 17 other countries. The need is growing faster than the resources, and that part got me. Because it’s clear: This foundation matters.
And here’s what I learned. I really want you to take away:
- ✨ You don’t need perfect health, a huge team, or a fancy title to start making a difference.
- ✨ Systems matter. Thoughtful structures create space for impact without burnout.
- ✨ Everyone has something to give—whether it’s $5, 15 minutes, or a word of encouragement.
If you’ve ever wondered how nonprofits stay strong in the face of overwhelming odds, or how someone battling daily pain can still lead with such fierce love—please, make time to listen to this episode.
🧡 Take a listen. Then share it. Someone out there needs to hear this story. Listen to the episode here.
