This is the first in a series of posts we plan to publish in order to help raise further awareness of lung cancer. We hope to highlight the work of the 20+ lung cancer patient advocacy organizations collaborating with us on our recently launched Lung Cancer Genetics Study.
A lung cancer diagnosis is often overwhelming, bringing with it a flood of questions — some practical, some deeply existential. From treatment options to family support, patients are often left searching for answers amid difficult news.
For Ilana Stromberg, a mother of five who was diagnosed with lung cancer in 2019, those questions felt all too familiar. She knew firsthand the isolation that can come with this diagnosis and the desire to connect with others who understand. So when an oncologist friend called asking if she’d talk to one of his patients, Susan Troper, Ilana immediately agreed to reach out.
The two women had more in common than just their diagnosis: they were close in age, each raising five children, and shared a Jewish heritage. “We talked about a lot of things, often our kids, but also about symptoms, fears, treatments, doctors…. We became friends.” But there was something deeper they also shared — a determination to change the future of lung cancer for the next generation.
The Urgent Need for Lung Cancer Research
Lung cancer remains by far the number one cause of cancer death in the United States. In 2020, more people died from lung cancer than breast, colorectal, and prostate cancer combined, according to the American Cancer Society. Despite this fact, lung cancer receives only about nine percent of federal cancer research funding, and much of that research doesn’t incorporate genetics.
While most of us know that smoking increases one’s risk, between 10–20 percent of people who develop lung cancers have never smoked or smoked less than 100 cigarettes in their lifetime. Two-thirds of these people are women, like Ilana and Susan.
Both Ilana and Susan shared concerns about the lack of options for patients and the need for more genetic research. They worried for their children, wanting to understand if genetic markers could reveal early signs of the disease. It was out of these conversations that the idea for a large-scale genetics study began to take shape.
Ilana’s lung cancer journey had motivated her family to start a non-profit called The Happy Lungs Project in 2021. The goal of The Happy Lungs Project is to advance research that leads to dependable treatments and a cure for RET-positive, non-small cell lung cancer. RET is a gene that acts as a biomarker — a sign of a specific subtype of cancer. When the RET gene is mutated, it can drive the uncontrolled growth of cancer cells, acting as the primary “driver” of cancers in people like Ilana. RET-positive lung cancer is relatively rare, accounting for about two percent of non-small cell lung cancers. There are many other genes (or biomarkers) associated with different lung cancer subtypes. For some, new treatments help slow the progression of the disease. However, scientists are still wrangling with understanding all the contributing factors in lung cancer.
It quickly became clear to Ilana that patient participation in research was critical for improving understanding of the disease and eventually developing new treatments. Through her work with The Happy Lungs Project, Ilana connected with leaders from other lung cancer advocacy groups, and she heard a common theme — an effort by many to create lung cancer registries, or databases containing detailed information about many people with lung cancer. Ilana recognized that a dedicated, national lung cancer registry serving all of these groups could be a game-changer for research, helping recruit patients for studies more quickly and investigating genetics along with other information about a patient’s cancer.
Although there were efforts in the past to create a broad lung cancer registry, there just wasn’t the means of making it happen, at least not until Susan’s involvement.
A Vision Grows: From Conversation to Collaboration
Susan Troper Wojcicki, who had an impressive career as a former CEO of YouTube and one of Google’s early employees, was also the sister of Anne Wojcicki, 23andMe CEO and co-founder, and Janet Wojcicki, PhD, an epidemiologist and professor of pediatrics at the University of California, San Francisco. Ilana asked Susan if she thought Anne and 23andMe would be interested in partnering on a lung cancer registry, speculating that 23andMe might already have in place the recruitment resources and privacy parameters to ensure robust enrollment and a safe and secure experience for patients.
Excited about this possibility, Susan spoke to her sister Anne about the idea of creating a nationwide genetics study for lung cancer, one that could unite scientists, patients, and advocacy groups in a mission to understand the genetic factors behind the disease.
In early 2023, Ilana got a text from Susan saying it was a go! Troper Wojcicki Philanthropies — the family foundation of Susan and her husband, Dennis Troper — would fund a collaborative effort, and Susan’s sister Anne’s company, 23andMe, could create a lung cancer registry and genetic research study. “Just like that, it was happening,” Ilana said. “It was born out of Susan’s unbelievable resourcefulness, untamed imagination, and staggering generosity.”
Building a National Registry with Patients at the Center
The aim of the Lung Cancer Genetics Study is to uncover genetic insights that could enable earlier detection, more effective treatments, and potentially even prevention strategies for lung cancer. What sets the study apart is its patient-centered approach. From the outset, Ilana and Susan recognized that meaningful change requires input from those directly affected, and they wanted to make sure that patient voices guided the design and implementation of the study.
Marcia Horn, president and CEO of ICAN, International Cancer Advocacy Network, leads several organizations that focus on specific lung cancer biomarkers. She recalls talking with Ilana about a patient registry and lung cancer genetics study that not only would involve all the non-small cell lung cancer biomarker organizations, but that Susan would convene a meeting for all the relevant organizations to participate in the planning.
This collaborative spirit brought together scientists, clinicians, advocates, and caregivers from across the country. At a special summit, expert researchers and representatives from 12 lung cancer advocacy organizations met to hash out the initial vision for the study.
“Ilana and I wanted to make sure that all the major players in non-small cell lung cancer biomarker support groups were invited to this meeting,” Marcia said. It was the first time that all the biomarker patient advocate leaders had ever been in the same room at the same time. “That was very exciting, and we’ve developed closer relationships and collaborations because of that meeting.” Since then, the number of advocacy organizations supporting the study has grown to nearly two dozen, with more than 25 patients and advocates participating as advisors.
After months of hard work, the study launched in July 2024 and enrolled 1,000 participants in less than six weeks, with a goal of reaching 10,000. In order to help more researchers make new discoveries, the de-identified data from the study will be made available to approved nonprofit researchers and institutions at no cost through a controlled-access database starting in the summer of 2025. De-identified data in the scientific database will include genetic data, data from surveys on participants’ lung cancer experience and, in some cases, data from medical records and tumor testing. Combining all these de-identified data types will help researchers investigate how genetics, environment, and other factors impact lung cancer risk and progression of the disease over time. The study is approved by a third-party ethics review board known as an institutional review board, or IRB.
According to Marcia, the Lung Cancer Genetics Study is a gift to patients, care partners, families, clinicians, and biomarker organizations everywhere.
“The results of the study will no doubt dramatically impact the field of lung cancer and could lead to the development of therapies that aren’t even conceived of right now,” Marcia said.
Susan’s Legacy Lives On
Just as the Lung Cancer Genetics Study was taking off, Susan’s health declined, and she passed away in August 2024. Her legacy, however, lives on through this initiative. Her drive to create something lasting and transformative is a testament to her commitment to patients, families, and future generations.
Ilana reflects on the study’s creation with gratitude for the friendship that sparked a powerful movement. “She never gave up. Susan remains the ultimate force of good in our world,” Ilana said. “Susan is a daily reminder of how to live this precious and fragile life, and I feel so very blessed to have known her.”
Today, the Lung Cancer Genetics Study stands as a beacon of hope in lung cancer research. By involving patients, families, and the scientific community, it holds the promise of uncovering insights that could reshape the future of lung cancer care.
To learn more about the 23andMe study, our collaborators, and eligibility criteria, visit the Lung Cancer Genetics Study landing page.
