Stronger Together: Honoring Our Rare Disease Warriors at Kansas University Baseball

One of the most beautiful things about the rare disease community is how we show up for one another. When the CSNK2B Foundation invited us to join their awareness campaign with Kansas University Baseball, we were deeply moved by their generosity — and grateful to KU for providing such a meaningful platform to amplify rare disease awareness. Jacci’s son Cameron had the honor of throwing out the first pitch — in honor of his PPP3CA warrior sister Claire, and every child courageously facing a rare disease diagnosis.

But the day was about more than baseball. It was a reminder of what happens when two communities, bound by the shared experience of rare disease, come together with purpose. Our Director of Outreach, Jacci Pittz, sat down with her friend and fellow advocate Denise from the CSNK2B Foundation for an honest and heartfelt conversation about what it truly means to live life alongside a rare disease diagnosis — the challenges, the grief, the resilience, and above all, the extraordinary power of community to carry you through.

We invite you to watch their conversation below. Whether you are a parent, caregiver, researcher, or supporter, we think you’ll find something in their words that stays with you.

https://video.wixstatic.com/video/bca101_8519105de3b34615b590d3c72c825370/480p/mp4/file.mp4

We are so grateful to the CSNK2B Foundation for embodying what this community does best: lifting each other up in pursuit of answers and hope. Together, we are stronger.