The Portrait Project: Marcelo Ortigao

Stories that follow science too often lose sight of the target: the people. For every groundbreaking innovation, there are thousands of individuals—patients, family members, doctors, researchers—who bring those discoveries past the finish line with clinical trials. We know little about who they are, why they’re involved in the trial, and how it’s impacted them. Through the Portrait Project, you'll meet the humans behind research in a candid and rarely published light.

In this story, we meet Marcelo, an infectious disease scientist, professor, pediatric patient advocate, and grieving father. Marcelo’s daughter, Juliana, tragically passed away in 2019 – just shy of 11 years old – from the most deadly pediatric brain cancer called DIPG (Diffuse intrinsic pontine glioma). Marcelo shares their difficult experience navigating clinical trials (and what he believes needs to change), his tireless work as a patient advocate, and his hopes for the future of pediatric clinical research.