Resources

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

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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 May 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 Wittebort
Stage IV NSCLC ROS1+
dx October 2015 at age 30
by Merel Hennink
Stage IV NSCLC ROS1+
dx November 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

ALCF Support Team

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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

Join the ALCF ROS1er 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.