Why We Participate in the Lung Cancer Voices Summit

Elizabeth and Sven de Jong discuss coming together with other advocates with a common purpose.

After Elizabeth de Jong was diagnosed with stage IV ALK+ non-small cell lung cancer in September 2016, she and her husband Sven set out to embrace the advice given to them by her doctor to “keep making memories.” That has foremost meant spending as much time as possible with family and friends. But it’s also led them to be advocates for the cause, raising funds for lung cancer research and speaking out about being a lung cancer survivor. Elizabeth has also served as a consumer reviewer for the Department of Defense’s National Lung Cancer Research Program and a National Lung Cancer Roundtable participant.

As dedicated advocates for the cause, Elizabeth and Sven have also participated annually in GO2 for Lung Cancer’s Lung Cancer Voices Summit. We talked to Elizabeth and Sven about what brought them to their first Voices Summit (previously National Advocacy Summit), what keeps them coming back, and their advice for others considering joining the Voices Summit this spring.

What prompted you to participate in your first Lung Cancer Voices Summit?

We attended our first Voices Summit in 2018. After Elizabeth was diagnosed, we made a commitment to raise awareness about lung cancer and raise funds for lung cancer research. We participated in a 5k to raise money for a lung cancer charity in 2017—and, as time went on, we knew we wanted to do more.

A friend told us about the Summit. We thought it would be a great opportunity to fulfill our commitment and to meet new people in the lung cancer community while learning more about how research is funded at the federal level.

What’s your favorite part of the Voices Summit?

Our favorite part is seeing the lung cancer community come together for a common purpose and a common voice. There are educational sessions and opportunities to learn new skills (including how to have a productive conversation with your elected officials)—but there is also the common voice that is raised to move lung cancer research forward. As a community, we need to actively share that voice publicly more often and to wider audiences.

Why would you recommend other people with lung cancer and caregivers attend the Voices Summit?

Each of us touched by lung cancer knows that the diagnosis changes our perspective on life—and it hammers home that we don’t know how many tomorrows we have. Yet, at the same time, as patients, caregivers, loved ones, physicians, researchers, and clinicians, we know that the average life span after diagnosis has increased in the last five years because of research advances.

As a patient, I reiterate this a lot so that patient voices can continue to be heard. We have to let Congress know we are important and that the research funded by the government is key to extending my life and my fellow patients’ lives. We need to raise our voices to be heard among the many demands for funding so we can keep funding lung cancer research that helps extend our lives. And maybe one day, we can say it is saving our lives.

Is there anything else you feel is important when you think about advocacy?

It’s important to note that effective advocacy with elected officials cannot be viewed as a one-day event. It must be continued throughout the year. When funding requests are fulfilled, follow up and thank your elected officials; when they fail, politely contact them and share your disappointment. Do periodic check-ins and tell them how you are doing and why their support for funding and research initiatives matters. Always use a kind and gracious tone, but make this personal because they need to remember your name and your story.