Tomorrow (January 10, 2024) I will speak on an FDA panel as one of the patient advocates, along with clinical investigators and oncologists. The discussion will highlight transformative oncology drug approvals in 2023 including one for ROS1+ cancer (my type of cancer). Topics we will discuss include patient and investigator perspectives on their experiences with these drugs, impact on patient’s prognosis and quality of life, how these drugs will change the treatment landscape, and barriers to access. Hope you will tune in! You can register at: https://www.surveymonkey.com/r/FTYFN3H FDA plans ..read more

This year’s Targeted Therapies in Lung Cancer Patient Forum is happening online Saturday June 15, and it’s FREE! Great way to learn about current treatment options for those eligible for targeted therapy. This signature, live, virtual, interactive patient education event includes presentations and panel discussions covering general subjects relevant to all targets as well as breakout sessions on specific mutations of lung cancer. Save your spot here: [https://give.cancergrace.org/…/targeted…/e490332](https://t.co/8TDXsdjyp5 ..read more

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

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

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

In early June, the American Society of Clinical Oncology held its 2022 Annual Meeting (#ASCO22) in Chicago. This was the first in-person annual meeting since the pandemic began.  While attendance was smaller than usual, McCormick Place (the largest convention center in North America) still hosted 30,000 oncology-related clinicians, researchers, healthcare professionals, patients, and advocates from all over the world.  To address the risk of COVID-19 transmission, attendees were required to prove they were fully vaccinated against COVID-19. Attendees also were required to have a ne ..read more

Today marks 11 years since I was first diagnosed with advanced lung cancer. Eleven years with the mostly deadly cancer. Imagine that! When I was diagnosed, my life expectancy was 2 years on the outside, and that was higher than the average because I was relatively young and otherwise healthy. The majority of lung cancer patients died within a year of diagnosis. Thanks to online patient communities, targeted therapies, biomarker testing, clinical trials, and dedicated clinicians like Dr. Ross Camidge, whose smiling face appears next to mine in this picture, I’m still here. These things, along ..read more