The ROS1ders Need More Research!

Join me in supporting real change. I was given the following cancer diagnosis in 2016: 1) non-small cell lung cancer caused by ROS1 gene abnormality, 2) stage 4 and 3) 6 months to live. ROS1+ lung cancer is rare, aggressive, non-hereditary, and has no cure. It occurs in only 2% of non-small cell lung cancers diagnosed yearly.

I am a 7.5-year cancer survivor because of ground breaking targeted therapy cancer drugs developed to fight this cancer. Most patients with this disease hope that they can find a drug that works and that it keeps on working until the next drug is available. There are only 2 FDA approved drugs and around 5 applicable drug trials for this cancer. When a drug isn’t available, the next line of treatment is usually chemotherapy. To date I’ve had numerous treatments to stay alive: 3 rounds of chemotherapy lasting 3 mo, 4 mo and 6 mo; 4 targeted cancer therapy dugs, including 2 drug trials and numerous hospital stays.

Is this effort worth it? I would wholeheartedly say yes as it enabled me to survive so I could care for my father for over 3 years from his Parkinson’s diagnosis to his death. It has also kept me alive to become my mom’s full time caregiver after she was diagnosed with Alzheimer’s.

The Ros1ders group was created by patients to support patients with a ROS1+ cancer diagnosis. As this cancer is so rare, we need to make our voices heard and we do that by raising money to support patient-partnered research into our own disease. We need your help to support our ongoing projects which are he ROS1 Cancer Model project, the ROS1 Real World Data project, and ROS1+ cancer seed grants.

The ROS1 Cancer Model Project enables people who have ROS1+ cancer to donate live cancer cells to make models to accelerate research. Through our efforts since 2017, we have helped to double the number of available cell lines and those cell lines have been shared with research institutions in the U.S., Canada, and Europe.

Our most recent project focuses on Real-World Data, which will develop ways to collect data from patients to get more information about their experiences with treatments and side-effects. In May 2022 we hosted a roundtable featuring an international panel of clinicians, researchers, patients, and caregivers experienced in ROS1+ cancer. Our goal is to create an international ROS1+ cancer Real-World Data project.

In addition, in 2023 we funded two $75,000 seed grants for ROS1+ cancer research projects. Our goal for 2024 is to be able to fund three $75,000 seed grants. With your help, we're so excited to move forward and help those with ROS1+ cancer improve outcomes! Visit our website to learn more about the ROS1ders patient-partnered research at The ROS1ders Global Initiative.

Just a small donation will go a long way to helping me meet my goal for The ROS1ders, Inc.