Turning Loss into Purpose: Running for PHACE and LUMBAR Research
In this episode of PeDRA Pearls, Denise Metry, MD, shares how mentors, patients, and unexpected opportunities shaped her career and commitment to PHACE and LUMBAR syndrome research. She discusses the power of multidisciplinary collaboration, patient-guided priorities, and the upcoming 2027 PHACE Syndrome Community research and family meeting. She also reflects on transforming personal loss into purpose through her 2025 Boston Marathon fundraiser, which raised $40,000 for future research.
Keywords: PHACE Syndrome, LUMBAR Syndrome, Patient Advocacy, Rare Disease, Infantile Hemangiomas
Program Guest

We gratefully acknowledge Palvella Therapeutics for their presenting sponsorship of the PeDRA Pearls Podcast.











