L3 Foundation Article
Following is an article from the August 2009 L3 Newsletter. L3 Leadership is a membership organization for leaders who want more. For more information on L3 click here.
Addario’s Latest Mission: Helping to Streamline Lung Cancer Research
L3 member Bonnie Addario says that by October she hopes to have a centralized lung cancer tissue bank in operation, thanks to the efforts of her recently created and second lung cancer foundation—this one focused on research and science.
So far, seven research leaders have committed to the Addario Lung Cancer Medical Institute or ALCMI (pronounced “alchemy”) to lead the foundation and provide and share information on lung cancer tissues. The tissues will be stored in a repository in Los Angeles after they are screened for genetic biomarkers—a practice that, unlike with breast cancer, is uncommon for lung cancer tissue today. Bonnie sits on the ALCMI Scientific Advisory Board and her husband, Tony, also an L3 member, is the chief executive officer of ALCMI.
Bonnie, herself a lung cancer survivor who lost a lung to the disease 5 years ago, founded her first foundation, the Bonnie J. Addario Lung Cancer Foundation, in March 2006. Today, it is one of the nation’s largest philanthropies devoted exclusively to eradicating lung cancer. The foundation works with physicians, organizations, and individuals to find solutions to the disease through research, early detection, education, prevention, and treatment.
Why start another foundation? In 2007 “we [the foundation] held a summit in which we asked about 75 thought leaders in lung cancer from around the world, ‘If money was no object, what’s the one thing you would do to change the 5-year survival rate, which is currently only 15%?’” Bonnie says. “It was agreed that establishing a national lung cancer institute with a specimen repository would advance research by leaps and bounds.”
To Bonnie, the most exciting part of this new effort is that it’s fundable. “We’re going to community hospitals because they’re not set up to harvest tissue, store it, and transfer it properly,” she says. “If you have cancer and you have cancer surgery at a community hospital, the tissue is thrown away. But just like heart tissue, it has to be packaged properly and shipped immediately. Community hospitals have no reason to do that. It’s amazing to think about all those tissues that have been thrown away instead of used for research.”
With ALCMI’s focus on both research collaboration and community hospitals, Bonnie is hopeful that the foundation eventually will receive federal funding. The foundation is presently applying for a grant from the National Institutes of Health, and by this October Bonnie hopes to have sample tissues in the repository. “This is a work-in-progress, but we’re moving at a rapid speed,” she says, adding that plans are also under consideration to establish a centralized database for the information. “Understandably, I’m in a hurry for all lung cancer patients.”
Despite such progress, both foundations face some longstanding challenges, particularly with messaging. The fact is that in the United States, 450 people die of lung cancer every day. According to Bonnie, lung cancer is the “biggest killer out there,” having surpassed breast cancer as the top killer of women in 1987.
Although powerful, this message is difficult to convey to an American public who for decades has learned to link smoking with lung cancer, even though in reality half of lung cancer patients quit smoking long before their diagnoses or have never smoked at all. To educate the public, the Bonnie J. Addario Lung Cancer Foundation advertises on busses and billboards in several U.S. cities—including Atlanta, Chicago, Los Angeles, New York City, and San Francisco—thanks to generous sponsorship by CBS Outdoor, an out-of-home media provider, and other private funding sources.
My main message is that people who never smoke can get lung cancer, too,” Bonnie says. “There’s a false sense of security out there in the world, especially for people who don’t smoke, that they can never get the disease, so they ignore symptoms” such as coughing, back pain, or a shooting pain across the chest.
“I highly recommend that if you have lost relatives to lung cancer if you have smoked, that you talk to your doctor and ask for a spiral CT scan,” says Bonnie, who concedes that controversy surrounds CT scanning in the medical community. She says that her own cancer was discovered through a full-body CT scan that she, not her physicians, pushed for.
As for her message to fellow L3 members, Bonnie recommends they take immediate control over their health. “Like you, I’ve been blessed. Early on I was a divorced mom who had [once] lost my house and car. I was blessed with three incredible kids and I had a couple of jobs [to] put a roof over our heads and food on the table, and I never looked back. But then my life really got incredibly wonderful. I remarried a wonderful man and I had a great job and ended up being president of a little oil company. I’ve always had this nagging feeling that there’s something that I needed to do that I haven’t done. And this is it. Like all L3 members, I truly believe that it is our responsibility to leave the world a better place.”
Thinking of starting a foundation? Bonnie Addario recommends that you:
• meet with as many private and public foundations as you can to find the one that best meets your needs
• have a “real one-on-one with yourself” about the time and effort this will require of you. Starting a foundation is a full-time pursuit, so you may want to begin by supporting or serving on a board of a foundation.
• think through your expectations and desired outcomes—and stay focused
Bonnie can be reached at bonnie@lungcancerfoundation.org
Tony can be reached at taddario@alcmi.net
