ADAO’s 8^th Asbestos Awareness Conference brought together some of the world’s greatest minds to discuss the impact of asbestos on public health, the environment, and the economy. To get an idea of the exceptional speakers we gathered this year, you can now watch a video presentation of U.S. Representative Steve Cohen accepting his “Tribute of Hope” award at the conference.

U.S. Representative Steve Cohen serves the 9th Congressional District of Tennessee, and he is the Democratic Regional Whip for the region encompassing Arkansas, Louisiana, North Carolina, South Carolina, and Tennessee. Speaker Nancy Pelosi paid him the ultimate compliment by referring to him as the “conscience of the freshman class” in 2008. Prior to his election to Congress, Cohen served in the Tennessee State Senate for 24 years.  He has a B.A. degree from Vanderbilt University and a J.D. from the University of Memphis Cecil C. Humphries School of Law. ADAO applauds Cohen, who was a great friend to Warren Zevon, for introducing a resolution that supports establishing the first week of April as National Asbestos Awareness Week.  In the resolution, Cohen wrote that the special designation seeks to “raise public awareness about the prevalence of asbestos-related diseases and the dangers of asbestos exposure.”

Join us at next year’s conference in Washington D.C., March 22^nd-24^th, 2013.

In unity,

Linda

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“Doing Something Positive” – Steve’s Story

We have been touched by asbestos in individual ways, yet we are joined together by a common bond of community. As a testament to the strength of our global family, Asbestos Disease Awareness Organization (ADAO) is highlighting the courageous stories of our members with the “Share Your Story” feature on our website.

This week, we would like to honor the story of Steve, shared by his wife, Linda, who is a part of our ADAO family.

We encourage you to submit your personal stories by clicking here and following the simple instructions on the page. In sharing, comes healing. Remember, you are not alone.

“DOING SOMETHING POSITIVE” – STEVE’S STORY

Name: Steve

Date of Birth: 2-MAR

Country: Oxford, UK

Date of 1st Symptoms: APR-2009

Date of Diagnosis: 16-JUN-2009

Diagnosis: Mesothelioma

Treatment: Pleurodesis, radiation to “ports”, chemotherapy (Velcade drug trial plus Cisplatin)

How has Asbestos changed your life? (unedited):

Long before Steve was born, his father was exposed to asbestos dust when he worked in the Bristol shipyards.  Steve’s dad was diagnosed with mesothelioma soon after retiring and died about a year later.  As a result, unlike many mesothelioma victims, we were familiar with disease and under no illusion about what the future held when history repeated itself in June 2009, as Steve was told he had the same disease that killed his father.

I still vividly recall how it felt to hear that devastating news and the overwhelming roller coaster of emotions that followed – disbelief, anger, fear, numbness, helplessness, hopelessness and grief as we looked into the future and saw nothing but a black hole.  Although we had decided to be open about Steve’s condition, I found it very difficult to talk about it, with tears welling up in my eyes and a lump in my throat.  I poured out my emotions in an e-mail to a friend and it was like opening a release valve.  I felt so much better afterwards.  It was her idea to write a blog and I’ve been doing it ever since to keep family and friends informed of Steve’s progress, raise awareness and share our experiences in the hope that it will help others going through the same thing.

I won’t pretend that those initial negative feelings have ever really gone away – there are still there, lurking below the surface and they occasionally bubble up when we go through a bad patch, or an innocent incident becomes a trigger for the emotions to erupt. However, looking back at the blog, it was suprising how quickly our attitude and outlook changed to something more positive.

Scouring the internet for information, we soon discovered Graham Sherlock Brown’s PETAL philosophy for living with mesothelioma, which I would recommend to anyone!  Through a press cutting sent by a friend, we made contact with Debbie Brewer, a fellow mesothelioma sufferer in Plymouth UK, and were buoyed along by her zest for life.  Debbie introduced us to the Meso Warriors on Facebook, who have been a huge support and a mine of information.  Through this network we began to appreciate the scale and global impact of asbestos on the lives of innocent people, their families and friends.

Once diagnosed, Steve’s medical team acted swiftly.  Within a week, a treatment plan was in place.  Two weeks later he started a course of radiotherapy to zap the “ports” where the chest drains had been inserted during his pleurodesis operation, so as to minimize the risk of the cancer seeding in these vulnerable areas.  He was offered and accepted a place on a drug trial (a combination of cisplatin and Velcade, a biological therapy which inhibits cancer growth) and began the first of six cycles of treatment just three weeks after diagnosis.

It was a grueling three weekly schedule – hospital twice a week for two weeks, followed by a rest in week 3 which included returning to hospital for a scan every other cycle.  In spite of the side effects of chemotherapy – fatigue, nausea, occasional vomiting, increasing peripheral neuropathy (numbness in fingers and toes) – we got out and about at every opportunity, making the most of good weather, enjoying the small pleasures of life and catching up with family and friends as often as possible, with Steve pacing himself and resting whenever necessary.  We began to understand that it’s possible to live with mesothelioma, rather than die because of it.

We had been hoping that Steve’s mesothelioma would shrink as a result of the treatment, so I admit we were disappointed when there was no change at the end of six cycles of treatment.  He was booked in for an assessment every three months thereafter to monitoring his condition.  And three months later, there was still no change.  And no change three months after that, and again no change three months later….and so it went on.  We realized that stable is GOOD.

As I write, Steve’s next assessment is in mid-June 2012, almost three years to the day since he was first diagnosed.  As always, we will be hoping for good news, but mentally preparing ourselves in case it’s not.  This is how we live our lives now – we rarely commit ourselves to anything important beyond the date of Steve’s next assessment.  However, once the assessment hurdle is passed, there’s no holding us back.

In the last three years or so, we have traveled widely in the UK and Europe finally seeing those places we had planned to visit “one day”.

After years of promising to be more sociable but not quite making it, we have enjoyed visiting friends, having people visit us and organizing social gatherings. In the “old days” we might have hesitated about doing something new.  These days, if offered the opportunity, the answer is usually yes, provided we can fit it in before Steve’s next assessment.  Hot-air ballooning; Steve at the controls, looping the loop in a Chipmunk airplane; dancing over the waves on a high speed boat; trying our hands at clay pigeon shooting; going to a classic horse race, international rugby matches, festivals of speed, exhibitions, theatre trips….Enjoying life to the full, together, while Steve is still able to do so.

When Steve was first diagnosed with mesothelioma, I wondered whether he would still be alive for some important milestones in our lives – significant events like our daughter’s 21st birthday, our son’s 30th birthday; both of us reaching state “retirement” age – even though we are more active now than pre-diagnosis!  He has been there to enjoy all of them so far. The next big milestone is our 40th wedding anniversary, less than three weeks away as I write.  Another milestone within our grasp!

We know that this state of affairs won’t last forever and times will get very tough indeed.  However, when that day comes, we will have some wonderful experiences in the memory bank to look back on and enjoy, and we know there is a community of real and virtual friends who will be there for us, whenever we need them.

Things have changed so much for the better since Steve’s father was diagnosed with mesothelioma 20 years ago.  We can only hope that there will be a medical breakthrough in the next 20 years, the sooner the better, for those whose mesothelioma journey has already begun, although it may be decades before they become aware of their condition.  We also hope that during this time there will be a global ban on the manufacture, import, export and use of asbestos, and that the world will wake up to the threat from the asbestos that’s already woven into the fabric of our daily lives and take this threat seriously.  We owe this much to the victims who have gone before and those who are now fighting for their lives.  We send our love to each and every one of you.

You can read more on http://doingsomethingpositive.blogspot.com/

* * *

View our previous stories HERE

ADAO is excited to present this Saturday, May 12 at the 2^nd International Symposium on Lung-sparing Therapies for Malignant Pleural Mesothelioma. This Symposium brings together renowned mesothelioma experts such Dr. Robert Cameron, Dr. Raja Flores, Dr. Courtney Broaddus, Dr. Anne Tsao, and Dr. Jim teWaterNaude, to highlight a few, to advance education for the treatment of mesothelioma.

I will be presenting on “Global Trends and Challenges in Preventing Environmental and Occupational Asbestos Exposures,” which will be available online via SlideShare beginning Monday.

Stay tuned for updates from ADAO including a recap of the symposium and more information on the latest developments in the medical field on malignant pleural mesothelioma.

Click here for the Symposium’s official brochure

In unity,

Linda

Linda Reinstein’s Social Networks

ADAO Social Networks

View and share the ADAO “Asbestos: See for Yourself” photos

ADAO’s Asbestos: See For Yourself campaign has been well received, and we are very grateful for the opportunity to share pictures of asbestos, the invisible killer. Tony Rich, an industrial hygienist who has provided photographs for the campaign, effectively reveals that asbestos is no invisible killer, but a real threat that everyone can see. Through the course of his occupation, and personal endeavor, Tony has developed a collection of asbestos-related photographs, product materials, artifacts, historical books & manuals, industry documents, and other associated media.

For the past 18 years, Tony has specialized in asbestos-related work, including: inspections, abatement monitoring, project management and regulatory compliance, air sample analyses, and worker training. He has also received training from the McCrone Research Institute for the microscopical identification of bulk asbestos via polarized-light microscopy (PLM). In promotion of asbestos awareness advocacy, Tony has made available many of his asbestos-related images, provided asbestos product materials for research and education purposes, and created asbestos training display aides for various organizations worldwide (including an exhibit in Washington D.C.).

Tony’s collection reveals the prevalence of asbestos in homes, offices, and other everyday places. The Asbestos: See For Yourself campaign is about the pictures and the experience of seeing millions of deadly asbestos fibers. We want to share, and we want you to share, the reality of asbestos. The asbestos is real, and it’s time to see the deadly mineral for yourself.  Prevention remains the only cure.

In unity,

Linda

Linda Reinstein’s Social Networks

ADAO Social Networks

Credit: Gervasio/SCO/STF

UPDATE May 10, 2013 - Pressure against the asbestos industry continues with a Brazilian Senator, Congressman, and Governor under fire http://bit.ly/KK6G0q

“They are Senator Demosthenes Torres (DEM-GO, until April 4), Congressman Carlos Alberto Leréia (PDSB-GO) and the governor Marconi Perillo (PSDB-GO).The three are part of the “bench of chrysotile.” They are legislators who, in exchange for defending the fiber carcinogen in parliament, supported financially by the asbestos industry in their campaigns. Chrysotile or white asbestos, is the existing type and still allowed in the country.”

This morning, May 8^th, an article was brought to us by our ADAO friend and Brazilian anti-asbestos advocate, Fernanda Giannasi, about the current state of the asbestos industry in Brazil. Corruption has run rampant as industry officials have worked for years with members of Parliament in their pocket, but now it finally seems that things are being done to put a stop to this. I encourage you to read the article for yourself, and learn about asbestos abroad. I recommend using opening the article in Google Chrome, as it will automatically translate from Portuguese to English, or by using one of the many free translation sites available online. The article can be read in its entirety, here: http://www.viomundo.com.br/denuncias/operacao-monte-carlo-atinge-em-cheio-lobby-parlamentar-do-amianto-perillo-demostenes-e-lereia.html.

Fernanda had this to say about the article: ”The closing of the most influential asbestos lobby - the Chrysotile Institute in Canada – and the denouncement of the involvement of the so called “Chrysotile Parliamentary Team” at the National Congress with big shots arrested in one of the most important police operation in the last years to combat illegal gambling games, corruption, money laundering and traffic of influence in the millionaire business of governmental constructions, is the coup de grâce for the asbestos industry. After this, it will be very difficult to the asbestos lobbysts speak out again or  present themselves publicly as they have done all these years to defend the indefensible asbestos”

Thanks again to Fernanda Gianassi for bringing this article to our attention!

Here is previous coverage from ADAO about Eternit in Europe and board member Stephan Schmidheiny’s plans to speak in Brazil at Rio +20

In unity,

Linda

Linda Reinstein’s Social Networks

ADAO Social Networks

June 2011: Linda and Larry at the MARF Symposium

I wanted to share two recent Facebook posts from Larry, one of the most courageous mesothelioma patients I have ever met during these past nine years.  The old Chinese Proverb must have written this for Larry and our ADAO family, “Out of the hottest fire comes the strongest steel.”  Larry, we all love you!   In unity, Linda Reinstein

*Note – the below are UNEDITED*

ADAO- is the World’s leading force on Banning Asbestos manufacturing and use in the USA- Eventually, Uncle Sam will realize USA has covered up and lied about how deadly Asbestos is. Pay off’s / corruption since 1928- must end now. Having ADAO is an inspiration to me. Please support the Asbestos Disease Awareness Organization.  Also contact your Senators and Congressman to push for a Total Ban on Asbestos- It is so bad that Asbestos industry and insurers have even paid off a Member of our Supreme Court- It is not just a Democratic or Republican problem-Both Parties on the take. End result- more deaths and little research money for a cure.

Larry wrote: “Staying Mad at Uncle Sam is fueling my desire to beat Mesothelioma and deal with the endless amount of politicians that either don’t care or have taken trips and money from asbestos industry- The biggest fools have been University Professors that have been given money to write articles saying asbestos is safe- Chief Justice Stephen Breyer has written Mesothelioma victims are faking the disease- He leads the pack – HARVARD (Educated ) – Corrupted by Insurance money and false information- He is an embarrassment to our country and our hard working men and women.- Other folks that have shown arrogance and made no effort to help are Senator Joseph Lieberman CT and Sen. Bill Nelson FL- Both sent me the same form letter response to my plea for help. The letter must have been by the asbestos industry for them. The weakness in our Government shows more everyday- the corruption of power using $$$ is evident even to uneducated grunts like me. As a veteran I have contacted the American Legion Heads- They are just plan Stupid- don’t need any pay offs.”

We have been touched by asbestos in individual ways, yet we are joined together by a common bond of community. As a testament to the strength of our global family, Asbestos Disease Awareness Organization (ADAO) is highlighting the courageous stories of our members with the “Share Your Story” feature on our website.

This week, we would like to honor the story of George, shared by his wife, Donna, who is a part of our ADAO family.

We encourage you to submit your personal stories by clicking here and following the simple instructions on the page. In sharing, comes healing. Remember, you are not alone.

“REFLECTION OF A LIFE TAKEN” – GEORGE’S STORY

Name: George

Date of Birth: 22-JUL

Date of Death: 7-FEB- 2008

Date of 1st Symptoms: OCT-2007

Date of Diagnosis: 30-OCT-2007

Diagnosis: Mesothelioma

Treatment: Had 1 treatment of chemo

State: CO

How has Asbestos changed your life?: Life was taken from this man who had given his life as a hard worker. He started his apprenticeship when he was 18 or 19 as a pipefitter, a union pipefitter. So, he was exposed to this poison, pipe insulation very young. He worked in the trade all his life. He owned his own business the last 25 yrs and was going to retire and our son was going to take over the business. Who I  might say has been a pipefitter also for many years. Now, we are praying and praying he will be ok. He is missed so much by so many people. It has been 4 yrs but seems like only yesterday that he passed away. The sorrow and hurt is still so raw. You don’t get over being together 50 years very easy. We were very young when we married. We have 3 children, 6 grandchildren and 9 Great grandchildren with 2 more on the way. I have so many mixed emotions about all of this. I think the one I can’t get past is the way he died. It was not necessary if the law makers would have done their job many years ago. Just knowing that so many people knew that this asbestos was a killer and they were allowed to sell it anyway is hard for me to forgive. Some how the law has to get changed about this poison. Somehow someone has to realize how many lives are being effected and do something. I hold them responsible and no one else. This is on their soul.

ADAO has just wrapped up working in Washington, D.C.!  Beginning on Wednesday, I was able to meet with Congressional leadership to continue our ongoing dialogue of how we can prevent asbestos exposure to eliminate occupational and environmental asbestos-caused diseases.  In addition to Hill meetings, I was invited to attend the “United for a Cure” medical conference, sponsored by the International Association of Heat and Frost Insulators and Allied Workers. It was a wonderful opportunity to join many well respected professionals in the medical and occupational health and safety field to maximize collaboration.  President Grogan and the International Vice Presidents lead an impressive conference, and again reinforced their tireless committed to protecting union workers and their families from asbestos-caused diseases.

ADAO would also like to give a shout out to the Mesothelioma Applied Research Foundation (MARF) for their unwavering commitment to research for a cure and invaluable patient support.

Stay tuned for pictures and more great news, including details from the Harvard Medical School “Current Concepts and Controversies in Asbestos Related Disease” conference in Boston this weekend.

Together, change is truly possible.

In unity,

Linda

Linda Reinstein’s Social Networks

ADAO Social Networks

We have been touched by asbestos in individual ways, yet we are joined together by a common bond of community. As a testament to the strength of our global family, Asbestos Disease Awareness Organization (ADAO) is highlighting the courageous stories of our members with the “Share Your Story” feature on our website.

This week, we would like to share the story of Jo, who is a part of our ADAO family.

We encourage you to submit your personal stories by clicking here and following the simple instructions on the page. In sharing, comes healing. Remember, you are not alone.

“FULL OF IMPOTENT RAGE” – JO’S STORY

Name: Jo

Date of Birth: 27-OCT

State: NY

Date of 1st Symptoms: Sept 2010

Date of Diagnosis: 8 Feb 2011

Diagnosis: Stage 4 Pleural Mesothelioma

Treatment: 6 rounds of chemo, Pemetrexed, Carboplatin currently March – June 2011. Phase 1 Drug Study 4 infusions done at Sloan Ketterings DTC center, Currently on Vinorelbine (chemo) have undergone 2 infusions so far.

How has Asbestos changed your life? (unedited): I have lived on this planet for 63 years. I’ve faced a number of serious health issues in my life. The battle I am facing now is epic.  Why? I can’t answer that. I don’t know how I was exposed to asbestos. I have no idea. I was married for 30 years, raised two monumentally wonderful children whom I am ever so proud of and grateful for.  I was an active person; volunteering, traveling with my family, I had a career, I was an outdoorsy and active person; skiing, kayaking, bike riding, hiking, camping, traveling.  Today it is difficult to walk to my mailbox. Right now my daughter, at the age of 28, lives with me as my caregiver.  She is a godsend but I have so much guilt for it. She should be living her own life not acting as care giver for her mother. In the fall of 2010 I was on a 25-mile bike trip with my girlfriends, kayaking in Cape Cod Bay and skiing on the first winter snows. Recently I went grocery shopping with my daughter and the activity level of that caused me vomit when I got home.

I am retired now and I thought that might be lovely because I have a bucket list. There are so many places I’ve never seen and and always wanted to go to: Patagonia, New Zealand, Alaska, Bhutan, St. Petersburg, Crete… A few weeks ago I had to travel to Minnesota so my sister and I clear out my mother’s apartment and I was barely able to make it through the 5 days we were there and my sister did 85% of what needed to be done.  Did anyone ever think it could come to this? I am full of impotent rage with our government, big business, Canada, and the willful greed and the indifference to human life. I AM worth more then a dime or the thousands that end up lining the pockets of those unconscionable people who live and breathe money. Life is worth more then that.  Today my chances at life are waning. My only consolation in all of this is that I know I have time to tell my children all they have ever meant to me and all they ever will. Life is precious and I didn’t deserve this, neither did any of the other thousands who have become “warriors” in this fight. I am ever so grateful for those who tirelessly carry the torch for all of us in the fight to end this blight.

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View our other Share Your Stories here.

For Immediate Release:

April 30, 2012

REDONDO BEACH, Calif.- A Statement from Linda Reinstein, Co-Founder, President & CEO of the Asbestos Disease Awareness Organization regarding the Canadian Chrysotile Institute’s recent closure:

“On behalf of the Asbestos Disease Awareness Organization (ADAO), we are pleased to announce that the Montreal-based pro-asbestos Chrysotile Institute has officially announced its closure. ADAO travelled to Washington, D.C. in October 2011 to discuss the asbestos problem with Canadian Embassy officials and is thrilled to hear the news of the end of such a large pro-asbestos Canadian entity. The Institute, first formed in 1984, has for decades promoted the safe use of chrysotile asbestos on behalf of Canada’s asbestos mining industry. Poignantly, news of the institution’s closure first broke on Saturday, April 28, recognized around the world as International Workers’ Memorial Day, and subsequent phone calls discovered that the institute’s phone number was no longer in service. This signals a momentous step towards the cessation of the mining and exportation of asbestos in Canada, and symbolizes a promising future for the effort to globally protect public health.  According to the Montreal Gazette, Pat Martin, Member of Parliament, a former miner and longtime critic of the asbestos industry, said, “I see it as a real tipping point in the movement to get Canada out of the asbestos industry.”

On the heels of the Eternit criminal verdict for Stephan Schmidheiny and Louis Cartier de Marchienne in Turin, Italy, ADAO is confident in the global progress towards an end to asbestos. However, while the Canadian Chrysotile Institute was a hugely powerful government-sponsored supporter of asbestos and pro-asbestos rhetoric, it is important to remember that equivalent organizations still exist in asbestos-producing countries such as Russia and Brazil. The World Health Organization estimates that 107,000 people die every year from asbestos-related diseases and our battle is far from over yet.”

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About Asbestos Disease Awareness Organization
The Asbestos Disease Awareness Organization (ADAO) was founded by asbestos victims and their families in 2004. ADAO seeks to give asbestos victims and concerned citizens a united voice to raise public awareness about the dangers of asbestos exposure. ADAO is an independent global organization dedicated to preventing asbestos-related diseases through education, advocacy, and community. For more information, visit www.asbestosdiseaseawareness.org.

Media Contact:
Doug Larkin
Director of Communications
Asbestos Disease Awareness Organization (ADAO)
(202) 391-1546doug@asbestosdiseaseawareness.org
www.asbestosdiseaseawareness.org