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

Help me celebrate ELEVEN years of effective ROS1+ cancer targeted therapy by donating to The ROS1ders nonprofit through the Paypal Giving Fund ( NO ADDED FEES): https://www.paypal.com/donate/?hosted_button_id=DH4CD2W3QQUKC The backstory: In May 2011 I was diagnosed with advanced lung cancer. At that time, surgery, chemo and radiation were the only treatments available. However, a small clinical trial had already begun for a targeted therapy pill called crizotinib. This pill that sounded like an alien seemed to inhibit ROS1+ cancer in about 80% of people in the trial. That was amazingly effect ..read more

I’ve just personally encountered a new-to-me health disparity in the lung cancer space. I’m not aware of tools in the healthcare system that can deal with it. Lung cancer care was confusing and overwhelming for me when I was diagnosed at age 55–and I was willing and able to access my digital medical records, Google standards of care, and connect with online patient groups. Dealing with my medical appointments and side effects took over my family’s life during my first-line treatment. At least I had an available driver who could accommodate clinic visits that ran long, or could reschedule trans ..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

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