The Power of Advocacy

Sven de Jong wants elected officials to see the faces of lung cancer.

Sven de Jong knows that personalizing lung cancer matters.

After his wife Elizabeth was diagnosed with stage 4 (IV) ALK+ non-small cell lung cancer in September 2016, the couple was determined to raise awareness and advocate for more funding for lung cancer. She reached out to a friend, who recommended they connect with GO2 for Lung Cancer. The couple attended their first Lung Cancer Voices Summit in Washington, D.C., the following spring.

“People have images in their mind of what a cancer patient does or doesn’t look like, or why somebody does or doesn’t get lung cancer,” says de Jong. “None of those hold true.”

This is a story about the value of lung cancer advocacy. We talk about it a lot, but telling your story on Capitol Hill does make a difference. Sven and Elizabeth de Jong’s advocacy efforts have spanned multiple states. For example, both of the West Virginia senators are cosponsors of the Women and Lung Cancer Research and Preventive Services Act. Four years ago, after living in WV for many years, they made the move to Pennsylvania and their advocacy extended to PA, as well. Still, they continue to meet with the WV staff annually to help move the needle.

Building support on Capitol Hill

As soon as the couple knew they were heading to Washington for their first Voices Summit, Sven de Jong reached out to their close friend, a former WV state senator and friend of Senator Shelley Moore Capito to ask her to make time to meet with the de Jongs.

De Jong recalls that when Senator Capito met his wife, she said, “You’re near my daughter’s age. And you don’t look like you have cancer.” That meeting completely reframed how the senator thought of the disease—and educated her about the disparate impact of lung cancer on women.

“We also did consistent follow-up and stayed in touch with Capito and Manchin’s offices as well as other elected officials,” says de Jong. “I would send them updates about Elizabeth. I would tell them what we were doing personally from a fundraising perspective so they knew we weren’t just going to D.C. begging for taxpayer dollars. After Elizabeth passed, Elridge Proctor, GO2’s Senior Director, Government Affais, informed Senator Capito and Manchin’s offices. Senator Manchin called me to extend his condolences. To me, that illustrates the impact advocacy can have.”

Shining a Light at the next Voices Summit

Sadly, Elizabeth de Jong passed away from lung cancer in July. While Sven grieves, he’s also determined to continue to raise awareness and much-needed dollars for lung cancer research.

And he will be attending the next Lung Cancer Voices Summit, scheduled for March 3-5, 2024. At the Shine a Light dinner that opens the summit, he will present his wife’s WebMD video, “One Day, Hour by Hour, with Lung Cancer.” He will then lead participants into GO2’s signature Shine a Light on Lung Cancer program, honoring and memorializing loved ones with a moment of silence as participants light up flashlights.

Finally, de Jong urges others to consider attending the Voices Summit. “Elridge Proctor, [GO2’s senior director of government affairs and public policy], and her team provide all the advocacy training for you. So, it’s a really easy process. And personalizing the conversation gets elected officials to actually do something.”