The IASLC Cancer Care Team Award honors multidisciplinary teams, as nominated by the patients they serve. Exceptional care teams offer the patient seamless and informed communication, as well as an individualized treatment plan based on not just the patient’s needs, but the patient’s wishes. The Cancer Care Team Award aims to highlight this kind of worldwide, outstanding care. The IASLC Cancer Care Team Award was established in memory of Marilyn Holman, who passed away from lung cancer in 2016. By recognizing Cancer Care Teams across the globe, we hope to spread awareness and speak to the out ..read more

Sorry I haven’t posted much in the past few years. It’s not because I’m sick — I still have no evidence of disease on scans after 10 years on the same targeted therapy for my ROS1+ cancer. It’s because I’ve been busy with living and with research advocacy projects. Research advocacy brings the patient voice to research. By sharing the patient perspective with those engaged in cancer research, research advocates help keep research focused on what matters to patients with the goal of improving outcomes for patients. For those interested in what research advocacy looks like, here’s an example. I ..read more

Lung cancer research gives patients hope, time with loved ones, and better quality of life. Ten years ago today, I entered a targeted therapy clinical trial for my ROS1+ lung cancer, taking an oral drug called crizotinib (trade name Xalkori). I’m still taking it (it’s now approved by the FDA and in many other countries) and have had no evidence of disease since I started it. Pretty amazing, since I had been given an expiration date of 2 years at the outside for my metastatic non-small cell lung cancer. In honor of Lung Cancer Awareness Month, please donate to lung cancer research. The ROS1der ..read more

Proud to have co-authored this print article about expert patient contributions as educators, advocates, and research partners! Thanks to Collaboration for Outcomes using Social Media in Oncology (COSMO) for the opportunity. You can read the full article online here: https://ascopubs.org/doi/full/10.1200/OP.21.00763 ..read more

The IASLC STARS program invites STARS alumni and anyone interested in cancer research advocacy to join us for a webinar about cancer drug development.  When:               Monday August 29, 2022, at 11:00AM Eastern Time Title:                Advocacy Opportunities in Cancer Drug Development and Regulatory Approval Speakers:          Upal Basu Roy, PhD, MPH, Executive Director of Research, LUNGevity Foundat ..read more

This presentation was given on April 6, 2022, by Janet Freeman-Daily (a lung cancer patient research advocate) at the IASLC 2022 World Conference on Lung Cancer (#WCLC22) in Vienna, Austria during the “Social Media + Communications Workshop ..read more

Lung cancer patient advocates share purpose, laughter, and tears. On #World Lung Cancer Day, I celebrate efforts to improve outcomes & quality of life for people living with lung cancer. Most of us have/had lung cancer. Many have died. Still, we persist because … we see how we make a difference. #LCSM #WLCD Below I’ve listed several large, established nonprofit organizations engaged in some aspect of lung cancer patient advocacy. All provide medically validated information about lung cancer, offer patient supports, and/or fund lung cancer research. Many individual patients (like me) and s ..read more

GO2 Foundation for Lung Cancer (with the support of the entire lung cancer community) has submitted an appropriations request of $60M in the FY23 Defense Appropriations Bill with a goal to increase funding for the Department of Defense Lung Cancer Research Program (DOD LCRP) to $60M from its current $20M. The entire lung cancer community is joining forces to make it happen! It takes only a couple of minutes to make your voice heard. But when all our voices join together, it becomes a ROAR. Please click the link below and follow the instructions to tell your US Senator & Representatives to ..read more

“All good things must come to an end.” Please join us for our last-ever #LCSM Chat on Thursday December 2, 2021 at 5 pm Pacific. Take time to check in, reminisce & come together as a community one last time. I’ve been a co-moderator for #LCSM Chat since shortly after it started in 2013. I must admit, it’s hard to see it end. I created its website. I wrote/posted most of its blogs. I worked with guests to create patient-friendly content. I’ve made many friends and connections. But it’s time for this to happen. It just represents a change in priorities–I have more than enough advocacy, writ ..read more

In May 2011—over 10 years ago–I was diagnosed with advanced lung cancer.  At that time, chemo and radiation were the only approved first line treatments for advanced or metastatic lung cancer. Despite undergoing chemo and radiation (twice), my cancer spread to my other lung and became metastatic. I was not inspired by the five-year survival rate for metastatic lung cancer patients back then—it was around 2%. However, in early 2011 a small clinical trial for a targeted therapy pill called crizotinib (trade name Xalkori) had begun for ROS1 positive (ROS1+) lung cancer. This cancer is drive ..read more