Involving ROS1-Positive Cancer Patients in ROS1 Research

Hey ROS1ers: This is an IMPORTANT REQUEST!

We all want to find a CURE for our disease, right?

To do this, we need to know how many patients are willing and able to participate in ROS1 research. The results will hopefully motivate more patients to join us, generate more interest in collaborative ROS1 research, and attract more funding to ROS1 research.

PLEASE COMPLETE THIS BRIEF 10-QUESTION POLL AS SOON AS POSSIBLE.  Just click on the link below to get started! It only takes about 5 minutes.   Results of the poll will be posted on this website, and the Bonnie J. Addario Lung Cancer Foundation (ALCF) ROS1 website.

SurveyMonkey Poll: Patient Interest in ROS1 Cancer Research

patients-banding-together-for-research

AND …

If you haven’t already, please complete the ROS1 patient survey on the ALCF ROS1 website. We need more responses–COMPLETE responses (all questions answered)–to have statistically valid data. It’s a long survey (might require an hour), but the length is necessary to accomplish its goals. The survey examines ROS1 patients’ diagnosis and treatment journey, family cancer history, patient exposure to toxic environments and materials, and other factors that might have contributed to the development of ROS1 cancer.  A poster about the survey was presented at the IASLC Chicago Multidisciplinary Symposium In Thoracic Oncology in September 2016.  The preliminary results of the survey will be presented at the IASLC World Conference on Lung Cancer in Vienna in early December 2016.

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Gray Connections

I was diagnosed with non-small cell lung cancer in May 2011. The cancer became metastatic in October 2011. No, I never smoked anything (except a salmon). I've had no evidence of disease since January 2013 thanks to precision medicine, clinical trials, and other patients. ANYONE can get lung cancer. Using my engineering degrees (MIT SBME 1978, Caltech Aeronautics MS 1984 and ENGR 1986), I enjoyed a 20-year career in aerospace systems engineering as a technical translator of sorts: I researched a scientific or engineering subject and helped others understand how this new gizmo could benefit them. In the time I have left, I want to use my skills to help others who have lung cancer, and increase the visibility and knowledge of lung cancer among those who don't. I also study brain research, enjoy traveling, write science fiction, and geek out about all sorts of science stuff.

3 thoughts on “Involving ROS1-Positive Cancer Patients in ROS1 Research

  1. Hi,I have stage 4 non small cell lung cancer(adenocarcinoma,EGFR wild type,ALK immunochemistry negative,KRAS G12D mutant.
    Living in Darwin Australia.
    Can you do something for me please?

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    1. Hi Nicolien,
      We have ROS1 patients in Australia who are active advocates and aware of Australian clinical trials. If you send us your request via our “Contact Us” page, one of them will be able to respond to you via email.
      Janet Freeman-Daily

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    2. Hi Nicolien, I’m from Sydney Australia – diagnosed with stage 4 NSCLC (ROS1+). I’m also a lung cancer advocate. Is there anything in particular that you’re after?

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