I’m fine, just busy with research advocacy

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’m pleased to share that I will be presenting at the International Society for Biological and Environmental Repositories (ISBER) 2023 Annual Meeting on May 4, 2023, in Seattle. I’m one of the speakers in a session titled “Prioritizing Diversity, Equity, and Inclusion in Biobanking.”

I’ll be sharing my views on biobanking to enable research based on my advocacy experiences. These include serving on the External Scientific Panel for the NCI Cancer Moonshot Biobank; collaborating with The Broad Institute’s Rare Cancer Dependency Map Initiative; establishing the ROS1 Cancer Model Project; and learning about human research protection regulations and ethics during a term on The Secretary’s Advisory Committee on Human Research Protections (SACHRP).

If you’re an established lung cancer patient advocate and are interested in learning more about research advocacy, please consider applying for the IASLC STARS program.