ADAO’s 20 Year Impact Report

ASBESTOS DISEASE AWARENESS ORGANIZATION

20 Years of Asbestos Awareness, Advocacy & Action asbestosdiseaseawareness.org

20042024

A MESSAGE FROM LINDA REINSTEIN CELEBRATING 20 YEARS OF ACTION & ADVOCACY ADAO is dedicated to preventing consumer, environmental, and occupational asbestoscaused diseases through national and international education, advocacy, and community initiatives.

Our vision is an asbestosfree world where no one suffers from asbestosrelated diseases.

Co-Founder & President In 2004, Doug Larkin and I co-founded the Asbestos Disease Awareness Organization (ADAO) in response to the devastating impact of asbestos on our families.

We met in Washington, D.C., during our advocacy efforts for loved ones battling mesothelioma—Doug’s father-in-law, Bill, and my husband, Alan. Their courage in the face of this preventable disease fueled our shared determination to drive change.

Together, Doug, our families, and I turned our grief and anger into action. We created ADAO to unite others affected by asbestos exposure. Doug, who tragically passed away from ALS in 2017, dedicated his life to this cause, and his legacy continues to inspire ADAO’s mission.

Thanks to many, what began as a grassroots effort has grown into a powerful movement, amplifying the voices of asbestos victims and building a legacy of prevention, justice, and hope for future generations.

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Asbestos Disease Awareness Organization

20 Years of Action

Education

“ADAO has deservedly earned its reputation as a reliable worldwide source for learning about the hazards of asbestos.”

— Arthur Frank, MD, PhD

In a world where prevention is the only cure for asbestos-caused disease, ADAO prioritizes public education and knowledge sharing with policymakers and the media.

ADAO has developed an extensive library of educational materials that are published online and through our partners. This year, ADAO launched Every13Minutes.org to emphasize the profound impact of asbestos disease and death in the United States, where a life is lost every 13 minutes because of asbestos. That adds up to 40,000 deaths per year and each of these deaths is entirely preventable.

ADAO’s annual Asbestos Awareness and Prevention Conference is a premier learning and networking opportunity for public health, medical, legislative, and labor leaders. In 2024, ADAO hosted its 19th annual conference in Washington, DC. ADAO leadership regularly presents and shares information at national and international conferences and congressional events.

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ADAO also hosts annual briefings for members of Congress and their staff in Washington, D.C. where ADAO is a well-respected source of information for members from both sides of the aisle. In 2025 we will host our 20th briefing.

These briefings support members and their staff in their policy-making efforts and keep them updated on the latest science, news, and regulatory policy changes related to asbestos and protecting public health.

Finally, ADAO is a reliable and frequently cited source for media that report on asbestos and public health. We have collaborated with investigative journalists and beat reporters to ensure they have a deep understanding of the threat asbestos poses to public health. As a result, ADAO has been featured in many of the decade’s biggest investigations into the dangers of asbestos.

Asbestos Disease Awareness Organization

20 Years of Action

Advocacy ADAO and colleagues advocate for a ban on the import and use of asbestos in the U.S. and around the world. While nearly 70 countries have banned asbestos, the U.S. has yet to act.

ADAO’s dual-track strategy focuses on both Congressional action and advancing regulation through agencies like the Environmental Protection Agency and the Food and Drug Administration.

The Alan Reinstein Ban Asbestos Now Act has been introduced in both chambers and has earned bipartisan support.

ADAO participated extensively in the development of the EPA’s asbestos rule-making and won several legal challenges that forced the agency to enhance public health protections.

ADAO has worked with Congress and the U.S. Surgeon General’s office to officially recognize the first week in April as Asbestos Awareness Week each year.

“Congress can do more with a pen, than I can with a scalpel.”

— Raja Flores, MD

In Congress: The Alan Reinstein Ban Asbestos Now Act The Alan Reinstein Ban Asbestos Now (ARBAN) Act is a comprehensive ban of all six asbestos fibers – chrysotile, crocidolite, amosite, anthophyllite, tremolite, and actinolite, plus Libby Amphibole (winchite, and richterite) in all conditions of use.

In Court: EPA Part 1 Asbestos Rule In September 2024, ADAO joined 17 co-petitioners in a case to force the EPA to strengthen their Part 1 chrysotile asbestos rule to prevent more needless deaths from asbestos-related diseases.

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Asbestos Disease Awareness Organization

20 Years of Action

Community Initiatives Resources and Support for Patients and Their Families The heart of ADAO is our community of “meso warriors” and those directly impacted by asbestos-related diseases. Their support and stories fuel our efforts and provide the deeply personal narratives that drive change.

In addition to providing resources and support for patients and their families facing asbestos-related diseases, we bring this community together through powerful virtual and in-person events.

Shared Stories: How Asbestos Changed Our Lives Forever For 20 years, ADAO has collected powerful personal stories from our community. In 2024, we released a compilation of 200 of these stories that capture the pain, loss, and resilience of those affected by asbestos.

These powerful narratives illustrate the devastating impact of asbestos on individuals and families, while highlighting the enduring strength of the asbestos warrior community. It is a tribute to their battles and a reminder of the ongoing human cost of asbestos.

Candlelight Vigils ADAO organizes annual Candlelight Vigils to honor those who battle asbestos-caused diseases and remember those who have passed away.

These events provide a powerful opportunity to share our stories, connect with each other and call for change.

"ADAO’s strength lies in its ability to unify the mesothelioma community and others suffering from asbestos-induced diseases, reminding each that they are never alone in their fight."

— Richard A. Lemen, Ph.D., MSPH

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Asbestos Disease Awareness Organization

20 Years of Action

Art & Advocacy ADAO combines the power of art and storytelling to amplify our advocacy efforts and inspire action in the fight against asbestos-caused diseases.

Notable collaborations with artistic icons such as our National Spokesperson Jordan Zevon, son of Grammy winner Warren Zevon; Steve McQueen’s widow Barbi McQueen; and award-winning photojournalist Earl Dotter—have been instrumental in revealing the diverse challenges and personal tragedies associated with asbestos exposure.

These alliances have illuminated the complex struggle against asbestos—from widespread environmental injustices to the profound personal impacts of asbestos-related diseases.

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Awareness Campaigns: Leveraging

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Age 10 - 30 Years

The digital era has expanded the scope of our advocacy, allowing broader engagement and connection in this crucial fight. Through compelling musical pieces, documentaries, political cartoons, and striking photo exhibits, we have united our community and inspired collective action.

ADAO is proud to know the artists and their families who have joined us to spread awareness and advocate for a ban on asbestos imports and use by lending their talents, their names, and their time to our shared cause.

“ADAO personalizes the plight of those suffering from asbestos disease so that their fight becomes our fight for a total and complete asbestos use ban here in the U.S.A." — Earl Dotter Earl Dotter’s “BADGES OF PAIN | VOICES FOR CHANGE: Photographic Poster Tribute to Asbestos Victims” highlights the crucial role of art in galvanizing support for a complete asbestos ban.

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Asbestos Disease Awareness Organization

20 Years of Action

Our Advisory Boards Science Advisory Board

Prevention Advisory Board

Our science advisory board reviews ADAO educational materials for medical and scientific accuracy.

Our prevention advisory board reviews ADAO educational materials for accuracy and occupational/consumer effectiveness.

They also provide medical and scientific background information to inform public policy development.

They also field inquiries and provide information; about asbestos prevention and abatement.

ADAO Science and Prevention Advisory Board Liaison Celeste Monforton, DrPH, MPH ADAO Science Advisory Board Co-Chairs Arthur L. Frank, MD, PhD Richard Lemen, PhD, MSPH

ADAO Prevention Advisory Board Chair Brent Kynoch

ADAO Science Advisory Board Members Brad Black, MD Barry Castleman, ScD Raja Flores, MD Michael Harbut, MD, MPH, FCCP Steven Markowitz, MD, DrPH Jacqueline M. Moline, MD, M.Sc. Christine Oliver, MD, MPH, MS Andrea Wolf, MD, MPH

ADAO Prevention Advisory Board Members Mark Catlin Claire Deacon Tom Laubenthal John Newquist Tony Rich Mark Winter

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Asbestos Disease Awareness Organization

20 Years of Action

Our Asbestos-Free Future As we enter our organization’s next decade, our work continues to evolve as we move towards a greater awareness of the dangers of asbestos and stronger protections to prevent unnecessary exposure and asbestos-caused diseases.

In 2025, we will continue our quest for a complete ban on all imports and use of asbestos by working with Congress to pass the Alan Reinstein Ban Asbestos Now Act. As EPA’s landmark asbestos regulations come into effect, we will work with the agency to make certain the implementation of these rules is as strong and protective as possible.

At the same time, we will continue to educate the public about the dangers of asbestos, especially the massive qualities of legacy asbestos, that threaten public health and safety. Our education efforts are anchored by our focus on preventing exposure to asbestos to keep every person safe from the threat of asbestos-caused disease.

Finally, we look forward to expanding our collaborative efforts with organizations and institutions.

These collaborations allow us to bring new allies into the fight against asbestos.

With Gratitude For 20 years, ADAO has relied entirely on the generous support of its sponsors and individual donors to fund its education, advocacy, and community initiatives.

The only two ways to end asbestos-caused diseases are prevention and a cure. With your support, we can get one step closer to our goals. Thank you for your continued support over the past two decades. We look forward to working with you to continue our impact as we look ahead to the future.

Get in Touch We welcome your ideas, your support and your questions as we continue our work. You can reach us at: 1525 Aviation Boulevard Suite 318 Redondo Beach, California, 90278

asbestosdiseaseawareness.org info@asbestosdiseaseawareness.org

facebook.com/ADAOAsbestos

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Asbestos Disease Awareness Organization

20 Years of Action