Rob Densen

Rob Densen

Adversity: Wife diagnosed with lung cancer in 2010

Advocacy: Co-founded “Leaders of the Lung Cancer Free World” campaign

Knowing that I did what I could, with what I had, to help as many people as possible – that’s why I do it.”

Rob Densen felt blindsided when his wife was diagnosed with Stage IV lung cancer. But he quickly took action and with his daughter, Arielle, founded Leaders of the Lung Cancer Free World. “The day or two after my wife was diagnosed it was, ‘Woe is me. How could this happen?’ But we flipped the switch and drew upon our training as journalists and advocates and turned adversity into advocacy. …At the end of the day, I think the most powerful statement you can make is, ‘I have no regrets.’ Whatever happens to my wife I want to be able to look her in the face and say we did what we could, we left nothing on the table. That’s our motivation.”

Leaders of the Lung Cancer Free World is designed as a network of leading nonprofit lung cancer groups including the CHEST Foundation of the American College of Chest Physicians, the National Lung Cancer Partnership, and Uniting Against Lung Cancer. “I didn’t want to create just another nonprofit,” Rob says. “I wanted to bring my and my daughter’s skill-set to bear to benefit all lung cancer organizations – creating an environment for greater understanding and support. If we can do that, every lung cancer organization will benefit.” Despite 160,000 lung cancer deaths annually in the U.S., lung cancer research remains under-funded. “It’s not just under-funded, but grossly under-funded,” Rob says. “For every $1 of government funding that goes to lung cancer, $20 goes to breast cancer. And when you include private funding – it’s probably 50 or 100 to 1; no one really knows.” One of the reasons, he says, is the smoking stigma attached to lung cancer; another is the abysmal survival rate. “It may be a sense of throwing good money after bad, but that just makes it a self-fulfilling prophecy,” he says. “The biggest issue is, who gives the most substantial share of the dollars for any affliction – it’s typically the families and friends of those touched by the disease. But because lung cancer is so lethal, the donor base is turning over every year or so. There are too few people to write the checks, not enough of us to go on the 5K walks. That’s a huge problem. We need to grow the circle of support, let more Americans know that they have a 1 in 14 lifetime risk of getting lung cancer.” In addition to raising awareness, Leaders of the Lung Cancer Free World has proven a community builder for those with the disease. “My wife says lung cancer is an incredibly isolating disease. There’s no cache, there are no pink ribbons, few support groups, particularly for women with lung cancer,” Rob says. “Lung cancer kind of goes on behind closed doors. People struggling with this horrible disease can feel alienated, embarrassed.” But the group’s Facebook site, with its 40,000-plus followers, has created an instant community. “People get to tell their story and know someone is listening, someone cares” he says. “That alone has created tremendous value.”

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January 27, 2014

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