@dragonspark, I started here. 🙂 My next step came from giving presentations at work, which led me to our local cancer institute's director of patient support and pre-screening. She told me about GO2 for Lung Cancer, go2.org, which advocates for more lung cancer research funding. They have an annual "Voices Summit" in Washington, D.C., in early March. They offer scholarships (transportation and funding) for patients who are attending for the first time. They started accepting applications in late November last year. My wife and I and another survivor from our state went to our Senate and House representatives and advocated for more lung cancer research funding. I'm still following up with my state representatives.

Through the GO2 Summit, I learned about the Congressionally Directed Medical Research Program (CDMRP) Lung Cancer Research Program (LCRP) and its desire for civilian reviewers. That work consists of reviewing research proposals to provide the patient/caregiver/community perspective on potential impact. The papers are very technical. I have to look up some of the medical terms, but they use the same statistics we engineers use.

At the Summit, I also learned about the International Association for the Study of Lung Cancer (IASLC), which is an international group of oncologists, radiologists, and other lung cancer specialists. As a cancer survivor, you can join for free. I applied to and was accepted into their Supportive Training for Advocates on Research and Science, Patient Research Advocates (STARS PRA) program. I'm still going through the five months of training that it takes to become a PRA. The advantage is that when drug companies want to hear the patient's perspective, they come to groups like the PRAs to see if anyone is interested. Being a research advocate for pharmaceutical companies is all about networking.

The IASLC is hosting the World Congress for Lung Cancer next month in San Diego. Registration, either virtual or in-person, is free for patients. It's also their 50th anniversary. As an international organization, the WCLC rotates between North America, South America, Europe, and Asia, so it won't be back in this country for another 4 years. This Congress, and the annual ASCO meeting, which I missed this year, are great networking opportunities.

I've also joined the American Society for Clinical Oncology (ASCO), though I haven't done anything with them yet. I've filled out a form for the American Lung Association for advocacy with them, but they haven't followed up, and I haven't had time! I know someone who also works with Lungevity, which is a great source of lung cancer information.

Those leads should keep you busy for a while! Once you get started, you'll run into the same people who get to know you, and word spreads. The important thing to remember is that lung cancer doctors, researchers, and companies WANT to hear from patients, caregivers, and communities. I've made this a long reply in case anybody else is interested in getting involved. We need to make sure our voices are heard!