We are so glad you’re here! We want this page to be your home on the web where you can come to learn about the latest news affecting ROS1 fusion positive cancer patients and get support from stories shared by other patients.

One of the most important things you can do upon a cancer diagnosis is to get all the information on your cancer type from trustworthy sources. Another powerful way to cope is to connect with others who are on the same journey- reading through their experiences will help you feel empowered and better prepared for your own experience.

Facebook

Several ROS1ers have gotten together on a private group on Facebook, where discussions range from diagnostic & treatment experiences, clinical trial options, and other information that you or someone you know may find helpful. Please Facebook message Tori Tomalia, Lisa Goldman, or Janet Freeman-Daily if you would like to join.

Smart Patients

Smart Patients has a ROS1 Cancer community. Relevant discussions are tagged “ROS1” to make them easy to find.

Blogs

Several ROS1ers are active bloggers, sharing their diagnostic and treatment journey, and providing a space for connecting with others who might be going through something similar.

by Beth Stroud

Stage III/IV NSCLC ROS1+

dx January 2013 at age 43

by Corey Wood

Stage IV NSCLC ROS1+

dx May 2014 at age 22

by Edgar Dinkelaar

Stage IV NSCLC ROS1+

dx May 2014 at age 33

by Elizabeth Dessureault

Stage IV NSCLC ROS1+

dx April 2015 at age 26

by Allisen (for Gwen Orilio)

Stage IV NSCLC ROS1+

dx January 2015 at age 31

by Janet Freeman-Daily

Stage IV NSCLC ROS1+

dx May 2011 at age 55

by Jim Brown

Stage IV NSCLC ROS1+

dx January 2015 at age 47

by Lisa Goldman

Stage IV NSCLC ROS1+

dx January 2014 at age 41

by Luna Okada

Stage IV NSCLC ROS1+

dx December 2012 at age 54

by Lysa Buonanno

Stage IV NSCLC ROS1+

dx December 2011 at age 40

by Marisa

Stage IV NSCLC ROS1+

dx October 2015 at age 30

by Merel Hennink

Stage IV NSCLC ROS1+

dx January 2014 at age 46

by Stephanie Polecastro

Stage IV NSCLC ROS1+

dx November 2013 at age 28

by Tori Tomalia

Stage IV NSCLC ROS1+

dx May 2013 at age 37

by Arne Steding

Stage IV NSCLC ROS1+

dx October 2012 at age 30

Translated Flyers

Please click below to download ROS1ders flyers translated into French and Dutch.

Dutch ROS1ders Flyer

French ROS1ders Flyer

ALCF Support Team

The Bonnie J. Addario Lung Cancer Foundation Patient Support team. We want you to know that we are here for you, along every step of the way! If you have questions about information we have here, navigating the complex path of cancer treatment, or anything else, please don’t hesitate to get in touch with us. Your message will be delivered directly to Danielle Hicks (Sr. Director of Patient Services and Programs), Michele Zeh (Patient Navigation and Services Coordinator), and Guneet Walia, PhD (Sr. Director of Research and Medical Affairs). They are always happy to hear from you.

Mailing List

We have created a separate mailing list for ROS1ers through which we keep ROS1 fusion positive cancer patients, their caregivers and family members posted on all the latest developments in the space in the ROS1 research space, as well as the ROS1-specific research and clinical studies the Foundation is developing.

Join the ALCF ROS1er Mailing List