Mesothelioma Awareness Day, established by Mesothelioma Applied Research Foundation volunteers in 2004, has been the driving force behind the movement to bring more attention and funding to mesothelioma.
Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
Posts about "ADAO"
Every year following Lung Leavin’ Day, I write a recap of the evening. This year I wanted to do something a little different. I know the event has a huge effect on people, and in the last couple of years people have shared their feelings about the night with me. I thought I would ask a few friends about their thoughts on the tradition and share them with you.
As a society, we put a huge emphasis on our children’s “firsts”: baby’s first tooth, baby’s first steps. The first birthday, the first day of school. Oh my, how I remember that day with Lily! So many of her firsts were milestones simply for the fact that I was not supposed to be alive to see them. I treasured each of those firsts, and marked the occasions with pictures and videos. I even still have her first tooth somewhere.
When I was diagnosed with mesothelioma, I felt more isolated than I ever had in my life.. I was a mere 36 years young and told I had an incredibly rare cancer that, in most cases, was diagnosed in much older men. I felt utterly alone and defeated.
I always credit Linda Reinstein from the Asbestos Disease Awareness Organization (ADAO) with giving me my voice. Four years ago, it was Linda who started me on this crazy journey of speaking and sharing my story with others when she approached me to speak at her conference.
Every year, 3000 people are diagnosed with mesothelioma.
In 2005, I was one of them.
I had never worked with asbestos, but my father did, and secondhand exposure as a child was enough to make me sick decades later. I was lucky, able to make a miraculous recovery through surgery. But I experienced for myself the fear, pain and suffering this disease can cause, and I believe I’ve found my calling fighting for victims of mesothelioma and other asbestos diseases.
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This is the third time I have attended ADAO’s Annual International Asbestos Awareness Conference. I still remember how I instantly felt like family when I attended my first conference in Atlanta, GA in April 2011. I found myself at home with others whose lives had been affected by mesothelioma and asbestos. It was wonderful sharing my experiences with others and hearing their stories as well.
I've said it before, my mesothelioma cancer was all at once the worst thing and best thing that has ever happened to me. Getting the diagnoses when my baby was only 3 1/2 months old was certainly not in our plans. I planned on being a working mom, but this cancer changed all that. I get to be a stay at home mom, I get volunteer with my daughter’s school and help out when I can. I actually enjoy it far more than I thought I would. When I worked in the salon, I used to joke that they would have to pry the shears out of my cold, dead hand before I ever quit, but I guess someone had other plans for me. Some days I do miss going to work, but all I have to do is sit and read some of the comments on my blog or Facebook page to know that I am doing the right thing-- I'm making a real difference in people's lives.
I cannot remember the moment I became aware of other mesothelioma warriors around the globe, but, sometime in the last few years, my friendship base grew from a couple of people I knew from Boston to many people from all over the world—the United Kingdom, Australia, Brazil; the list goes on and on. A few in particular stuck out because of their fierce passion against this disease and what it has done to their lives and to others’ lives as well. “Turn anger into action,” they say. Sadly, many have passed, succumbed to this dreadful disease and mourned by people worldwide. Many are doing well, fighting hard, and making it known that they won’t give in. I was lucky enough to meet one of these brave women this last weekend when my husband and I attended the Asbestos Disease Awareness Organization’s annual conference in Los Angeles, CA.
This past weekend I traveled to Los Angeles, California to attend the Asbestos Disease Awareness Organization's international conference, “Asbestos: An International Public Health Crisis”. From March 30 to April 1, I was surrounded by renowned experts and other asbestos victims and survivors like myself. It is an amazing event that brings us together to share our experiences and learn about how we can help spread awareness and education about the disease and learn about new treatment options.