Featured content courtesy of the Precision Medicine Podcast®. To subscribe and listen to all three seasons visit: PrecisionMedicinePodcast.com
In this Precision Medicine Podcast episode below, we talk with lung cancer patients Lisa Goldman and Tori Tomalia about the ROS1ders, an organization they created to support those with ROS1-positive cancer—a group that represents just 2% of lung cancer patients.
We were fascinated by how two women with no formal medical background could form such a highly respected and resourceful group for those with this rare type of cancer. The women told us that when they and a mutual friend Janet were diagnosed with ROS1-positive lung cancer, they came together to learn more about precision medicine treatment options by reaching out to one of their doctors with questions.
What they learned is that there wasn’t much information to be found, and, as the doctor said, they would need to bring together a critical mass of ROS1-positive lung cancer patients to enable better cancer models and the needle on research. That’s exactly what these heroic women did.
They leveraged a Facebook group they had started for sharing information to encourage other ROS1-positive lung cancer patients to donate biospecimens and further research. They also encouraged those with ROS1-positive lung cancer to donate excess biospecimens to specific research labs that were helping to build a ROS1-positive cancer model. The goal was for that model to be shared freely with other academic researchers and available for a fee to pharma research. As Lisa said of the effort, “We can't afford to have our biospecimens siloed. There just aren't enough of us. There aren't enough samples that we can have that luxury.”
These courageous women are part of a larger trend of patient advocacy groups that have become a vital resource to accelerate clinical trial awareness and enrollment for patients.
They believe deeply that collaboration is the only way to get the research to move faster and offer better precision medicine options to those with rare cancers.
In addition to sharing insightful tips for those newly diagnosed with cancer, Lisa and Tori inspired us with their tenacity at a time when many would feel like giving up. Tune in to the podcast to hear more about their incredible journey. You can also learn more about their life-changing organization at https://ros1cancer.com/