Dr. Wilfredo De Jesus Rojas runs with a purpose honoring patients with HPS at Bay to Breakers, 2025
Dr. Wilfredo De Jesus Rojas ran the 15K Fun Run, called Bay to Breakers, in honor of the Hermansky-Pudlak Syndrome community during the American Thoracic Society’s international meeting, May 16 – 21, 2025 in San Francisco, CA. Let him tell us about it in his own words:
As a pediatric pulmonologist, my daily work centers on the breath—on helping children with rare and chronic lung diseases take each breath more freely. But on this day in San Francisco, I ran not for myself, but for those whose breaths are often labored, limited, or lost to time and misdiagnosis.
Participating in the iconic Bay to Breakers race, I proudly wore the message “Dare to Be Rare” across my chest in honor of my patients with Hermansky-Pudlak Syndrome (HPS)—a rare genetic disorder that affects the lungs, among other organs. For these patients, every step can feel like a marathon. So I ran those 15 kilometers carrying their stories, struggles, and hopes.
Running through the streets of San Francisco, I wasn’t just chasing a finish line. I was advancing a movement—for awareness, for earlier diagnosis, and for better care. HPS is more than a medical condition—it’s a challenge of equity and recognition, especially in underserved communities.
Let this run be a call to action: to clinicians, researchers, families, and policymakers. Rare diseases are not rare to those living with them. Together, we must raise awareness, empower our communities, and ensure no child’s breath goes unheard – Wilfredo De Jesus Rojas, MD, FAAP, Pediatric Pulmonologist
