From Personal Loss to Research Advocacy

How the IASLC STARS Program empowered advocate Sofía Jubany to turn lived experience into meaningful impact in lung cancer research.

For many people affected by lung cancer, advocacy begins with a deeply personal story. For one advocate from Argentina, that journey started long before she imagined becoming involved in research advocacy.

Sofía Jubany’s connection to lung cancer began when she was 16 years old, when her father was diagnosed with the disease and passed away just six months later.

Years later, lung cancer would once again profoundly shape her life. In December 2023, her mother was diagnosed with non-small cell lung cancer during an evaluation for skin cancer. Despite prior imaging and meeting criteria for screening, the diagnosis came nearly a year later, after the disease had already metastasized to the brain, liver, and both lungs.

“That moment changed everything for me,” she says. 

As an only child balancing work and caregiving, she began searching for ways to better understand lung cancer and become involved. One unexpected resource became a lifeline: the Lung Cancer Considered podcast.

“I could keep working while learning everything I could about lung cancer,” she says. “I listened to every episode and began connecting with patients and caregivers from around the world.”

Through those connections and later through the IASLC, she discovered patient advocacy as a structured, impactful discipline.

“In Argentina, and in much of Latin America, patient advocacy as a formal concept barely exists,” she explains.

“My goal became absorbing as much knowledge as possible from countries where advocacy is well established and translating that experience into my local and regional context.”

That search led her to the IASLC STARS Program, which equips patient advocates with the scientific knowledge and tools needed to contribute meaningfully to lung cancer research.

“I wanted my country and my region to be better represented within IASLC,” she says.

Through STARS, she developed the scientific literacy and confidence needed to collaborate with researchers and clinicians.

“STARS has given me the tools, language, and confidence to represent Argentina and advocate more effectively for patients and families.”

One moment during the program proved especially transformative. During an early session, someone told participants: “You already have your own PhD — a Personal History of Disease.” “Hearing that in an academic and scientific space was a turning point,” she says. “For the first time, I understood that my personal experience was a legitimate form of expertise.”

Today, she applies what she learned through STARS to expand advocacy in Argentina. She founded pulmon.ar, an initiative that connects patients and caregivers, provides reliable information, and strengthens collaboration between patients, clinicians, and researchers.

“Everything I do is shaped by STARS”

She hopes her story encourages other advocates, especially those from underrepresented regions, to step forward.

“Every region deserves to be at the table,” she says. “The more perspectives we bring, the better we collaborate and the greater the impact for patients.”

This September, Sofía will serve as a guest speaker at the 2026 World Conference on Lung Cancer.

If you’re inspired to make a difference in lung cancer research and care, the IASLC STARS Program offers two unique opportunities to help you amplify your impact. Take the next step. Apply today and become part of a global movement transforming lung cancer research from the inside out.

For more details, visit the IASLC STARS Program website: STARS PRA Program or STARS Scholar Program