Thank you for visiting. Funding ROS1 research is very dear to me. I hope to organize various events throughout the year and donations are welcome anytime or in lieu of gift occasions. On behalf of my fellow ROS1ers, we appreciate all the support we can get!
Advocating for lung cancer was not my first choice. I run from the spotlight and prefer a quieter independent path. But along my own lung cancer journey I've met some amazing people, none who deserve a lung cancer sentence. Every day people like me are diagnosed with incurable lung cancer. I am a never-smoker, active tennis player, health conscious, mother, wife, sister, and daughter. I worked at a desk job and had no obvious risk factors, yet at age 45, I tested positive for the ROS1 mutation, the driver of my cancer. It's not hereditary. Anyone with lungs can receive this diagnosis. As bad as it was, it felt like winning the lottery to test positive for a known mutation that could be treated by targeted therapy. Targeted therapy is an oral medicine that allows cancer patients to live normalized lives; not normal, but a workable option. Currently there is only one FDA approved targeted therapy for the ROS1 mutation.
Limited treatment options make this journey downright scary. After a couple of years or as soon as a few months, the ROS1 fusion develops resistance to the medicine. Patients must then search for clinical trials they hope to qualify for, geographically have access to, and can afford to participate in. ROS1 patients are in the smallest sub-type which accounts for only 1% of adenocarcinoma lung cancer. Drug companies have little interest in funding research for such a small group. As I'm writing, there are only two clinical trials enrolling qualified patients. My friends need treatment options now and I want to do something to help.
It's Not a Dusty Piggy Bank
When I said I've met some amazing people in my ROS1 group, I meant it. A few of them got together and approached The Bonnie Addario Lung Cancer Foundation about the possibility of spearheading a ROS1 clinical trial. We're talking about a patient generated study. Using our combined data, tissue samples, and anything else we can give, we're making it happen! There's a strategic plan in place that needs funding now and that is why I have the strength to stand in the spotlight and ask for help. I want to see my fellow ROS1ers thrive. If not for us now, then at least for those who come after us.
Together we can make a difference! - Pamela