How One Survivor Became an Advocate: Perspectives from a Voices Summit 1st-Timer

In March 2024, Oakland-based photographer Genevieve S. joined lung cancer advocates in Washington, D.C., to share her story and urge support for lung cancer research with members of Congress. We spoke with her about her experience as 1 of 109 first-time GO2 for Lung Cancer Voices Summit participants.

How did you become interested in attending the Voices Summit?

I hadn’t met any lung cancer survivors until I got involved with GO2. In the beginning, after I received my diagnosis of stage 3 (III) lung cancer, I was so overwhelmed. Only later, after I recovered from surgery and chemotherapy, I thought, “I really need to do some networking.”

My first GO2 event was the San Francisco 5K, where I met other survivors. Following the 5K, I attended GO2’s Gala and went to a Lung Cancer Living Room®. It was at the Living Room where I first heard about the opportunity to go to D.C., and I knew I wanted to do it right away. Once I decided to go, I felt so empowered. This empowered state has helped my health a lot.

What was your experience like? 

I learned a lot about lung cancer, research, and the disparity between lung cancer and other common cancers in terms of funding. Many of the people we met in congressional offices were surprised to find out that lung cancer is the deadliest cancer and the least funded of all major cancers.

On the short walk from the hotel to Capitol Hill, union members joined us, their jackets proudly embellished with patches identifying themselves as pipefitters. As we crossed the street onto the Hill, about 50 firefighters in their suspender pants led the way. Summit participants organized into small groups; I was part of the Northern California contingency. We first visited the offices of our representatives inside the Rayburn House Office Building.

While waiting for an appointment with my representative, we chatted with gynecologists in white lab coats. “Oh yes,” one said, “I’ve heard of the connection between women and lung cancer, but I didn’t know it was that strong!”

During the appointments, I was a little nervous telling my story but seeing so many every day people advocating for their passions really helped put me at ease. Being in meetings with people who are more experienced in talking about policies that impact people with lung cancer calmed my nerves. Now that I have experienced the Voices Summit, it seems like such a normal thing to do. I loved being part of democracy.

I also love the solidarity I now have with other advocates affected by this disease. It was inspiring to meet people who, for many years, have been advocating in D.C. for policies that improve the lives of people with lung cancer. We have so much skin in the game.

What is 1 key piece of advice you would tell lung cancer advocates who are thinking about attending?

Just GO! Don’t worry if you think you can’t do it. It is not this exotic thing that only certain people do or that you need special qualifications. Lung cancer advocates should go to see the benefits of networking, advocacy, and education. It was so cool to see that this is an every day thing that people do and is a key part of our democracy.

Is there anything else you would like to share?

At the Living Room, I met people who have been dealing with EGFR – my specific mutation – for a decade or more. My whole worldview shifted that night to, “I can do this.” Before being involved in the GO2 lung cancer community, I thought that if my disease progressed, it would be the end of the world. Now I realize that if the cancer progresses, I just keep going.