About The ROS1ders
The ROS1ders was founded in 2015 by a small group of ROS1+ lung cancer patients. We are now the largest collection of ROS1+ patients and caregivers in the world, with hundreds of members from dozens of countries. Initially, we partnered with other nonprofits to drive research into ROS1+ cancers of all types. In 2019 we incorporated and became The ROS1ders, Inc., a 501(c)(3) nonprofit corporation run by volunteers, most of whom are patients or caregivers living with ROS1+ cancer.
The ROS1ders is a global group of patients and caregivers
living with ROS1+ cancer. We seek to improve outcomes for
all ROS1+ cancers through community, education, and research.
Private Facebook group for patients and caregivers to navigate patient care and share research and treatment updates—to join, complete this form and ask to join the group
Online Zoom MeetUps to share experiences and knowledge
In-person MeetUps (coming soon)
Website shares evidence-based information on ROS1+ cancer, treatments, ROS1 clinicians, clinical trials, and living with our disease
Social media posts share news about ROS1+ cancer
Newsletter highlights progress and patient and caregiver tips
Webinars and conference
presentations disseminate information
Members donate fresh tumor specimens to create cancer models
Pursue real-world data collection
Host gatherings of ROS1 experts to sustain and promote research
Collaborate with key players to improve patient care and access to clinical trials
Fund seed grants to attract new research for ROS1+ cancer
Our Leadership Team
Janet is a cancer patient research advocate and activist who translates the experience and science of cancer for others. She was diagnosed with advanced lung cancer in 2011 and metastatic ROS1+ lung cancer in 2012. She collaborates, writes, and speaks with cancer organizations both internationally and within the USA, and blogs at Gray Connections. Janet previously worked as a aerospace systems engineer.
CoFounder, Vice President,
Lisa is a cancer patient/advocate. She was diagnosed with ROS1+ Stage IV NSCLC in 2014. She is a member of the Pfizer Lung Cancer Steering Committee and a Patient Advocate for the Lung Cancer Foundation of America. She speaks at medical conferences both internationally and in the USA and blogs at Every Breath I Take. Lisa previously worked as a fitness instructor and lawyer.
Upal Basu Roy
Upal Basu Roy is Executive Director of Research at LUNGevity Foundation, where he oversees the research strategy of LUNGevity Foundation. As a patient research advocate, Upal works with national organizations such as the US FDA and the NCI, patient advocacy groups, and pharma partners. Upal has over 10 years of translational cancer research experience in the laboratory. He received a Ph.D. in Cancer Biology and an MPH in Global Health Policy and Management.
Steve J. Weiss is an attorney with Hertz Schram who specializes in employment and business disputes as well as personal injury/medical malpractice. He received his JD from the University of Miami School of Law in 1980, and has been honored as one of the "Best Lawyers in America." He is married to Karen Weiss, who has stage IV ROS1+ cancer.
Amie Parker is an educator working to support teachers with their classroom technology. She was diagnosed with ROS1+ Stage IV NSCLC in 2017. She is active in the ROS1der community and provides support and resources to other ROS1ders.