From searching in the dark to healing in the light — how technology became a tool for prevention, policy, and change.
In the quiet hours after Alan’s mesothelioma diagnosis, I sat at my desk, the dial-up modem screeching to life as I searched for answers — any answers. There were no smartphones, no trusted databases, no central place to turn for help. Just fragmented pages, medical jargon, and an overwhelming sense of isolation. What began as a desperate search through grief and loss became something far greater.
With grit and an unshakable purpose, I embraced technology not just as a lifeline, but as a catalyst. Two decades later, digital tools now help drive prevention, influence policy, support healing, and connect communities around the world in the fight against asbestos. This is how advocacy evolved — from a caregiver’s heartbreak to a global movement powered by memory, mission, and modern technology.
Grief, Grit, and a Dial-Up Modem
In 2003, when my husband Alan was diagnosed with mesothelioma, there was no roadmap. No smartphones. No trusted websites. Just me, a sluggish computer, and the screech of a dial-up modem trying to load pages — one line at a time.
I can still hear the piercing sound of that modem.
At night, after caring for Alan and our 10-year-old daughter, Emily, I’d sit in my small home office, glued to the computer.
Looking for anything — clinical trials, treatment options, specialist names. The pages loaded painfully slowly. Links broke. The information was fragmented and jargon-driven. I never did find the answers I was looking for. And I was terrified.
Technology became my friend and lifeline. As the modem screeched and paved the way to broadband, ethernet, Wi-Fi, mobile browsers, apps, and gigabit speed, I evolved with it. In the blink of an eye, I transformed from a tired caregiver into a grieving widow, then witnessed the rise of a new digital world — one where voices, when united, could become a force for change.
The need for truthful, fast, and accessible information became my life’s mission — and has remained my driving purpose, long after Alan’s death.
Transforming Grief into Action
I didn’t set out to build websites, draft legislation, or lead global asbestos prevention efforts. I just wanted to save my husband’s life. And when I couldn’t, I wanted to make sure no one else had to go through what we did — alone and in the dark.
That’s how the Asbestos Disease Awareness Organization (ADAO) was born. In 2004, I met Doug Larkin, ADAO’s co-founder, at Senator Patty Murray’s Ban Asbestos Briefing. We connected instantly on an unspoken level — two people navigating similar heartbreak, the tremendous and terrible unifier. Doug’s father-in-law, Bill, was also undergoing treatment for mesothelioma.
From that moment on, we — and our families — joined forces to prevent others from suffering like Alan, Bill, and so many more. Both Alan and Bill passed away from preventable mesothelioma in 2006 and 2004, respectively.
I lost my dear friend and collaborator, Doug, to ALS in 2017. And while ALS appears to silence all those it touches, Doug’s voice, vision, and tenacity remain deeply embedded in everything we do.
Introducing The Source
I am proud to share a new project we’ve undertaken at ADAO.
We call it The Source — a multilingual chatbot built on two decades of experience and digital advocacy. The Source combines our most trusted science, stories, and strategies to prevent asbestos exposure and disease.
It’s fast, accurate, and available in over 100 languages. Drawing directly from ADAO’s four websites and more than 3,000 pages of verified content, The Source provides instant, reliable answers. Whether someone is searching for exposure risks, mesothelioma information, legal rights, prevention tools, or policy updates — The Source delivers.
And it does so in seconds.
Shared Stories — United for Change
Alan’s memory drove me to become an accidental advocate, which led to meeting Doug and founding ADAO — and his legacy remains a guiding force. Along the way, I’ve met many admirable asbestos warriors who have fought for a better world. They’ve inspired not only me, but also Congressional members and their staffers, friends, loved ones, and strangers around the world.
Often in different languages and from different life experiences, sharing stories can truly change lives. I’ve said it for years in speeches and classrooms: Every story must be heard, felt, shared, and remembered.
What Is Simple Isn’t Always Easy
In 2003, and again in 2004, I wrote to President George W. Bush, urging him to issue a proclamation to raise awareness and prevent asbestos exposure. His team responded that their focus was on obesity and heart disease.
Then, out of the blue, Senate Majority Leader Harry Reid’s office called me and said, “If you write the resolution, we’ll introduce it.”
So I did.
That resolution became the foundation of National Asbestos Awareness Day, held annually on April 1. A few years later, it expanded into a full week of recognition — National Asbestos Awareness Week — and a resolution honoring the week has now passed unanimously in the U.S. Senate for 20 consecutive years.
The simple fact remains: if we can prevent asbestos exposure, we can eliminate asbestos-caused diseases. That truth continues to drive our advocacy, education, and policy efforts to this day.
We launched The Source just ahead of this year’s Global Asbestos Awareness Week, knowing this tool would amplify efforts across more than 70 countries — and help fill a dangerous gap here in the United States, where, unbelievably, asbestos is still not banned.
Nearly 40,000 people die each year from asbestos-caused illnesses.
From Our Homes to The Hill
That’s why we continue to champion the Alan Reinstein Ban Asbestos Now (ARBAN) Act.
ARBAN is the strongest legislative path forward to end asbestos use in the U.S. — a comprehensive ban that closes loopholes, protects public health, and honors the lives already lost.
This work doesn’t stop when Congress is in session. It continues year-round — building relationships, holding briefings, and shaping policy.
Tools like The Source support that work by making facts accessible, empowering the public, and pushing decision-makers to act.
“If You Build It, They Will Come”
While creating The Source, I kept thinking about that line from Field of Dreams. I wasn’t building this for just one person — I was building it for anyone still searching. For those trying to understand a diagnosis. For those trying to stop another preventable death. For anyone seeking the truth and unable to wait.
After all these years, I was still building it for the helpless caregiver of a loved one with a cancer I couldn’t even pronounce.
The Source isn’t perfect — no tech is. But it’s strong, scalable, and strategic.
We hope its very existence will spark new ideas to improve and expand its abilities — attracting technologists, epidemiologists, anthropologists, cancer specialists — to help us finish the job we were handed in the darkest moments of our lives.
Inspiring the Next Generation of Advocacy
Before I co-founded ADAO, I organized charity runs and used a clunky word processor that crashed more often than it saved. But even then, I believed that when used right, technology could make advocacy stronger, faster, and surprisingly more human.
I didn’t come into this work as a trained lobbyist, lawyer, or tech developer — just a determined mesothelioma widow who knew that asbestos had caused one of the most significant man-made disasters in history. I taught myself everything — how to navigate federal legislation, build websites, and translate grief into action — because I had no other choice.
Over time, that self-taught path became a strategy — and ultimately, a legacy.
ADAO has spent 20 years researching, organizing, and fighting against asbestos. We have the knowledge to help others — and now, we have the ability to share that information with everyone, everywhere, with no barriers to access, thanks to The Source.
We’re writing the future, one story at a time.
Whether you’re a patient, a journalist, a policymaker, or someone simply searching for trusted asbestos information — this tool is for you.
But it’s also for Alan, and the hundreds of thousands like him. He was the reason I first sat down at the computer — searching for answers, hope, and more time. When Alan passed away in 2006, with Emily and me by his side, I never stopped.
Not just for him, but for everyone still searching — to prevent exposure, eliminate asbestos-caused diseases, and make sure no one walks this path alone.
The Source helps do that. Powered by 20 years of ADAO’s work.
We’re not done.