Father's Fight To Change Pediatric Brain Tumor Research

As a member of the DIPG Advocacy Group, Marcelo Ortigao fights for greater awareness and funding for DIPG, a devastating pediatric cancer often dismissed as "rare" but largely neglected.

Juliana Ortigao’s experience in a clinical trial for diffuse intrinsic pontine glioma (DIPG) was heartbreaking and ineffective, reflecting the urgent need for improvements in pediatric disease care. Her father, Marcelo Ortigao, a scientist with decades of experience in clinical research, turned his grief into advocacy after Juliana’s passing. He now dedicates his efforts to advancing pediatric brain tumor research and pushing for systemic change in clinical trial accessibility and government investment.

As a member of the DIPG Advocacy Group, Ortigao fights for greater awareness and funding for DIPG, a devastating pediatric cancer often dismissed as "rare" but largely neglected. He and fellow advocates have pushed for a national DIPG Awareness Day, only to face repeated legislative roadblocks. Ortigao also highlights systemic failures in disease care, arguing that the U.S. healthcare system prioritizes profit over patient well-being. He advocates for a shift toward systems medicine, collaborative clinical trial structures, and increased use of telehealth to alleviate the burden on families. Ortigao's mission is to transform clinical trials and pediatric disease care so that no family faces the same struggles his did.