The roots of the Bonnie J. Addario Lung Cancer Foundation (ALCF) trace back to a shooting chest pain that led to a CT scan and a 2004 diagnosis of stage 3B lung cancer for Bonnie Addario. From that moment on, her life was redefined and a powerful patient voice was born.
At age 56, Bonnie was a wife, mother, grandmother, president of an oil company and leader in breaking through the industry’s glass ceiling. She also became one of millions facing a 16% survival rate. Her initial prognosis was grim. Most doctors provided little hope, but Bonnie eventually found a thoracic surgeon willing to help, telling him, “If I am going to die from this disease, I don’t want it to be because I did nothing!” After a 14-hour surgery, multiple rounds of chemotherapy and radiation, Bonnie became a survivor with a new purpose in life.
Despite losing family members to lung cancer, she knew little about the disease. She wanted knowledge, but her search uncovered little credible information. Everyone said, “Cancer is a journey,” but no one had a roadmap. Bonnie was determined to create one.
With 1.5 million people affected by lung cancer, Bonnie also wanted to become a voice for patients facing this highly stigmatized disease, the world’s number one cancer killer annually. U.S. death statistics indicated approximately 450 deaths daily, but lung cancer received the least amount of funding for research. Where was the outrage about this injustice?
On 3/6/06, news broke that Dana Reeve (Christopher Reeve’s wife, age 44) died of lung cancer. Bonnie said, “Enough is enough!” It was time to go into high gear fighting lung cancer.
The patient-founded, patient-first Bonnie J. Addario Lung Cancer Foundation was born in 2006 to advance innovative research, provide free education/support resources, and champion advocacy to erase stigma and advance early detection. One of ALCF’s first initiatives was an awareness program on buses and billboards across the country. Working globally and collaboratively, ALCF empowered patients, giving them a voice in conversations where leaders in medicine, industry and policy could make decisions that affect their lives.
To ensure that patients have a roadmap throughout their journey, ALCF’s resources included the first-ever comprehensive patient education handbook; the shared data Patient Registry; one-on-one counseling; and the monthly Living Room Education/Support & Speaker Series & Worldwide Livestream. Since 2008 the series and other programs, archived in ALCF’s Video Library, have reached close to one million people in 144 countries. Through community outreach, ALCF also touched thousands yearly through its national 5K series and other events.
Because ALCF was committed to accessibility for underserved, at-risk, vulnerable populations—regardless of where they live, socioeconomic status, health literacy, education, language— materials were offered in Spanish, Chinese, and English. ALCF also established a much-needed multidisciplinary standard of care through its growing Community Hospital Centers of Excellence Program at 30+ sites in 14 states nationwide.
Over time ALCF also evolved into the first international collaborative entity of its kind, raising millions for research and patient/family support programs. In 2008 ALCF founded a second nonprofit organization, the Addario Lung Cancer Medical Institute (ALCMI), an international research consortium to advance innovative studies, including the first-ever study of lung cancer in adolescents/young adults under age 40.
Anyone can get lung cancer and anyone can have a positive impact on the world. From the moment Bonnie was diagnosed and founded ALCF, her personal experience inspired their patient–focused mission, helping thousands to navigate the disease and gain access to the best standard of care. ALCF also provided patients and families something that is critical, indefinable, but essential. . .HOPE.