Posted on January 7, 2013

On behalf of the Asbestos Disease Awareness Organization (ADAO), I have the opportunity to frequently speak to Congress, health care providers, national and international organizations, and families about the deadly legacy of asbestos and the urgent need for a global asbestos ban. However, one of the most frequent questions I am asked is: “What exactly does your organization do?” Today, I would like to answer that question and provide a better idea of what ADAO does, from a typical day in the office to our long-term goals.

Who we are. Doug Larkin and I founded ADAO in 2004, after both of our loved ones had been diagnosed with mesothelioma, an asbestos-caused disease. As we cared for them, we met other patients and families whose lives were also devastated by asbestos exposure.  As we watched the people we cared for succumb to a deadly, yet preventable, disease, we began a journey of advocating to end asbestos exposure in the hopes that no one else would have to experience the pain we lived through. ADAO started small, and, slowly but surely, our organization grew as more and more victims, families, and communities affected by asbestos joined us. Thanks to volunteers, interns, supporters, donors, patients and their families, LeadershipScience Advisory Board, Prevention Advisory Board, and our National Spokesperson Jordan Zevon. ADAO, a 501(c)(3) non-profit, is the largest United States-based independent asbestos victims’ organization today. ADAO’s expansion has also been made possible through the creation of a leadership development program that enables ADAO to work with local undergraduate and graduate students studying business, communication, law, and public policy. Our network includes over 20,000 individuals eager to live in a world without asbestos, a known human carcinogen.

What we do. ADAO’s vision is to eliminate asbestos-related diseases, including mesothelioma. To achieve this vision, ADAO works with public health organizations and passionate leaders throughout the world to prevent consumer, environmental, and occupational exposure to asbestos.  ADAO is about much more than banning asbestos. We are a round-the-clock organization committed to three initiatives: education. advocacy, and community, as seen in our 2012 Year-In-Review.

ADVOCACY. ADAO collaborates with various national and international organizations to promote public health and

advocate for an end to asbestos use. Each April, ADAO organizes an annual Global Asbestos Awareness Week, which was launched following our successful initiative to pass Senate Resolution 389, which designates the first week of April as “National Asbestos Awareness Week” in the U.S. Additionally, since 2004, ADAO has hosted numerous staff briefings for the House of Representatives, the Senate, and the White House.

COMMUNITY. I will always remember the grief and deep isolation I felt when my husband Alan was diagnosed with mesothelioma in 2003 and it claimed his life in 2006. Since then, our ADAO community has grown exponentially.  With the use of social media platforms such as Facebook, Twitter, and LinkedIn, ADAO provides educational materials, support, and resources to patients and families around the world. Also, through personal storytelling campaigns such as “Share Your Story” and “6 Word Quotes,” ADAO has raised awareness about the dangers of asbestos, while also uniting patients and families for prevention and community support.  As a result, we have witnessed a dramatic shift from isolation to community as families and professionals offer support and resources to others in need.

EDUCATION. Every year, ADAO speaks at numerous international conferences and events, such as the American Public Health Association’s (APHA) Annual Meeting and Exposition and the United Nations Rio+20 Conference. These speaking engagements enable ADAO to collaborate with public health organizations and educate the public about preventing asbestos exposure. ADAO also hosts an annual International Asbestos Awareness Conference, where world-renowned experts and asbestos victims present the latest advancements in disease prevention, global advocacy, and treatment for asbestos-caused diseases. This year’s conference will be held on April 3 – 5, 2020 in Washington, D.C.

Additionally, ADAO designs educational graphics and answers countless questions from individuals, from “Do I have asbestos in my home?” to “What’s mesothelioma?” to “How can I help?” Every week, ADAO writes two to three blogs to educate the public about asbestos-caused diseases and correct misconceptions about asbestos. Our Science Advisory Board assures that the information we give is cutting-edge and accurate.

From the very founding of our organization, ADAO has abstained from providing any medical or legal referrals, which gives us a unique position in the victims’ community. ADAO remains an independent organization that is not influenced by outside sources, such as drug companies, law firms, or companies that manufacture or use asbestos.

Where we’re going. ADAO will continue to work towards preventing asbestos exposure by urging lawmakers to ban asbestos, supporting the community of individuals whose lives have been devastated by asbestos, and educating the public about asbestos disease prevention. Our goal is a world without asbestos and without asbestos-related diseases.  Join ADAO community and actions by signing up for our eNewsletter and following us on Facebook!

Together, change is possible,


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