Asbestos Disease Awareness Organization


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The Asbestos Disease Awareness Organization

The Voice of the Victims”

Asbestos Disease Awareness Organization

Asbestos is a public-health crisis, not a bankruptcy crisis.

July Newsletter

Asbestos Disease Awareness Organization Science Advisory Board

Asbestos Disease Awareness Organization is pleased to introduce our Science Advisory Board, lead by Dr. Richard Lemen and Dr. Arthur Frank.  Their combined safety and medical experience represents more than fifty years. 
Asbestos Disease Awareness Organization Scientific Advisory Board Goals:

  • Raise public awareness about asbestos exposure and asbestos related diseases and their prevention.

  • Educate the public about diagnosis and treatment of asbestos related diseases.

  • Provide accurate and newly emerging independent asbestos related disease information and analysis.

  • Review ADAO medical educational and prevention materials.

  • Facilitate patient support groups.

  • Advise regarding new treatment and research needs for asbestos related disease.

  • Support the ban on asbestos and asbestos containing materials worldwide.

Dr. Richard Lemen

Assistant Surgeon General of the United States, USPHS (Retired), Deputy Director and Acting Director of the National Institute for Occupational Safety and Health (Retired), Centers for Disease Control and Prevention (CDC)


Dr. Arthur Frank, MD, PhD

Professor of Public Health, Drexel University School of Public Health

Keeping Him In Our Hearts – With Much Gratitude

Two auctions were held on the Warren Zevon Bulletin Board ( recently as fundraisers for ADAO. The items auctioned were a gold record honoring sales of 500,000 copies for The Wind, Warren’s last record, and an autographed photograph. While bidding was competitive, in the end, $2625.00 was raised for ADAO. Jordan Zevon, the son of the late rocker and National ADAO Spokesperson, moderated both auctions and has promised more in the future.

In addition, Jordan has kicked off his own recording career with a self-titled EP. Distribution will be arranged through and iTunes. The EP will be available through his own website,
Warren Zevon passed away in 2003 after a year’s battle with mesothelioma.
ADAO sincerely appreciates the Warren Zevon family of friends and fans who have joined our efforts to end asbestos diseases.

July 12, 2005 – Deadline for EPA Committee Hearing

August 1, 2005 – Sponsorship information available online for the 2nd Annual Asbestos Disease Awareness Day in Buffalo, New York
ACTIONS SPEAK LOUDER THAN WORDS … Our fight for asbestos disease awareness and fair and balanced legislation needs YOU…yes all of you.

President Bush has nominated Granta Nakayama, a partner in a law firm whose clients include W.R. Grace, BP, Dow Chemical and DuPont, to lead the Environmental Protection Agency's far-flung enforcement division.
ADAO opposes the nomination of Granta Nakayama –The U.S. Senate Committee on Environment and Public Works meets on July 12, 2005. Senator James Inhofe, R-Oklahoma, chairs this committee. Please voice your opposition.
The recent Specter – Leahy draft of S. 852 is available online at:

The Collegium Ramazzini again call for an International Ban on Asbestos.

Update on Grassroots Campaign

ADAO’s legislative efforts have been strengthened by a robust petition letter-writing campaign by volunteers from every state in the Union. During their consideration of S. 852, the “FAIR Act,” last month, members of the Senate Judiciary Committee received hundreds of letters from ADAO supporters in response to appeals from ADAO legislative representatives. Some supporters went to extraordinary lengths to help others submit their letters. One volunteer in Pennsylvania, Senator Specter’s state, used her own computer to help send letters from several other supporters who lacked Internet access.

Victims’ stories continue to come into ADAO by e-mail and phone calls. ADAO provided a number of victims’ stories to Judiciary Committee staff, in support of ADAO’s proposed changes to the bill.
During the Judiciary Committee debate, these tactics provided reinforcement to the advocacy efforts of senators who wish to see a bill that truly protects and supports victims. As the battle moves to the full Senate, an expanded grassroots letter campaign will continue to provide a base of support for the political forces opposing the current bill. A similar effort will be undertaken as the House of Representatives considers similar legislation.
While keeping up this effort, ADAO is planning to expand the grassroots campaign to the state government level, to counter a trend toward state legislation based on medical criteria that would strip the right to a trial from many victims of asbestos-related disease.
Key opposition points to Senate Bill 852:

  • Faulty medical criteria used for determining compensation

  • Inordinate compensation delays and ineligibility for the victims
  • Inadequate funding for not only compensation, but also research, education, prevention and outreach

  • Inadequate funding model that will lead to insolvency of trust fund

  • No opt-out clause for the victim

Oppose S. 852, sign and circulate the petition at

Share your story with Congress…

Asbestos Disease Awareness Organization ( and Public Citizen ( are looking for individuals, other than residents of Libby Montana, who have been diagnosed with asbestos-related diseases but who cannot document occupational exposure or who have no knowledge of having been subjected to any such exposure either directly or through a live-in family member.

The purpose of this search is to assemble a databank of examples that can drive home the inadequacy of the proposed asbestos trust fund because it fails to cover the millions of Americans who run the risk of being sickened by casual environmental contact with asbestos.

Each story is important to the asbestos trust fund debate. Please note on your story if you are available to speak to the press or travel to D.C. to speak with members of Congress. ADAO and Public Citizen will not disclose any personally identifying information about those who want to remain anonymous. Please include your name, address, phone, type of disease and exposure on your email to

Asbestos Victims Coalition

Victims of asbestos-related diseases, doctors and consumer advocates have united in opposition to the corporate bailout. The Coalition is working to raise awareness about the inequities in the asbestos trust fund legislation proposed by Senators Arlen Specter (R-PA) and Patrick Leahy (D-VT). This growing list will be available online to all organizations and the media.

To add yourself or your organization to the list, please email including the name, address, phone, website and, if an organization, the name and title of the person requesting the listing. Only the name of the organization or individual will appear on the list and no other identifying information will be published.
The following organizations and individuals oppose the Specter-Leahy asbestos bailout bill, S. 852.
This newly launched list will be frequently updated.

The following organizations and individuals oppose the Specter-Leahy asbestos bailout bill, S. 852.

  • Asbestos Disease Awareness Organization

  • Asbestos Diseases Advisory Services of Australia

  • Asbestos Diseases Society of Australia

  • Asbestos Victims Organization

  • Ban Asbestos and Eliminate Mesothelioma

  • Committee to Project Victims of Mesothelioma

  • David Egilman MD, MPH, Brown University

  • Environmental Working Group

  • International Ban Asbestos Secretariat

  • Mesothelioma Support Organization

  • New York Committee for Occupational Safety and Health (NYCOSH)

  • Palmer Electric Company

  • Public Citizen


  • Society for The Advancement of Occupational and Environmental Health (SAOEH)

  • Terry Trent Biologist/Asbestos Activist

  • The World Trade Center Environmental Organization (NY)

  • USAction

  • White Lung Asbestos Information Center

  • White Lung Association

  • 9/11 Environmental Action

Coalition Press Release

ADAO is committed to honoring the courageous and innocent victims who have lost their fight against asbestos related diseases. Margy, our ADAO Nevada representative, lost her father to mesothelioma. In honoring his memory, she has provided a name/photo tribute website for all victims.

If you would like Margy to add a photo of your loved one, please email her directly at
The tribute can be viewed at:


Ray Turpin, Chairperson

On April 1, 2006, the Second Annual National Asbestos Awareness Day, ADAO will present an International Asbestos Awareness Conference to be held in Buffalo, New York.

This International Asbestos Awareness Conference will provide education and outreach to affected families, employers and employees throughout the world.
World-renowned doctors and speakers will present current and up-to-date information regarding the status of Asbestos in the United States, Canada and worldwide. Sessions include:

  • Asbestos History

  • Medical: Detecting and Treating Diseases

  • Regulatory Aspects: Enforcement, Education and Training
  • National and Global Legislation

  • Victims’ Support and Resources Panel

The prestigious ADAO tributes will be presented to honor people who demonstrate the values of “Unity”, “Hope” and “Inspiration” during the Awards Luncheon.

Exhibitors will be on hand to provide the latest information in the Asbestos fields.
Sponsorship information will be available on August 1st. Email your questions to

Registration will begin in January 2006.

Conference information can be view at

Our ADAO, “Asbestos Kills”, slideshow is being requested by leading safety advocates around the world. For more information, please email

ADAO’s informational handouts are free and available to the public by emailing
"Reflections" is an online medical and historical publication, featuring articles from Dr. Richard Lemen, retired Assistant Surgeon General,

Dr. Philip Landrigan, Dr. Michael Harbut, Dr. Robert Taub, Dr. Arthur Frank, Paul Brodeur and a photographic essay from Bill Ravanesi. Reflections is available free online at
In our efforts to save and protect lives, "Reflections" includes:

o Identification of high-risk occupations

o List of early warning symptoms

o Strategies for preventing exposure

o Articles focusing on detecting and treating diseases

o The tragic history of asbestos

In Pennsylvania…Marilyn - ADAO Pennsylvania Representative

In honor of Joe Amento, beloved husband, father and friend, Marilyn, ADAO PA Representative, sponsored the 19th Hole for the School's golf outing. Not a fundraising event, but AWARENESS raising. Marilyn continues to receive requests for additional information. Congratulations to Julie, Joey and Marilyn for taking asbestos disease awareness to the next level. As we know, prevention is the only cure.

Asbestos Awareness Bracelets In Memory of My Dad ~By Julie Amento

Here's a toast to my Dad who earned "Honors" by scoring best on the last golf hole - Life. May we all learn great lessons from his life and death. My Dad was kind and gentle and had never-ending patience. You would never hear a mean word from him or see a frown on his face. His sense of duty and selfless loyalty to our family, church, and coaching are examples of the "quiet good" that he did during his life. He was a great Dad to me and Joey. I miss him a whole bunch.

My Dad died at the age of 53 because he was exposed to asbestos as a kid. He used to visit his Dad at the Ambler Asbestos Pipe Plant. He played there on the asbestos scrap pile. On July 26, 2003, my Dad died from asbestos-caused mesothelioma - a disease for which there is no treatment or cure. Know that in 2005, asbestos is still legal in the United States and is used in thousands of products. For the sake of your family and community, learn what you can about asbestos. Read the Asbestos Disease Awareness Organizations on-line booklet, Reflections, at:

In St. Louis… Shelly - ADAO Missouri Representative

On June 24, tanks in the Praxair caught fire and exploded, sending contaminated debris to surrounding neighborhoods. Shelly, ADAO Missouri

Representative, was responsive and vigilant in her efforts to raise awareness about deadly asbestos exposure to the media and local and state officials. Missouri's John Whitaker, an on-scene coordinator for the state’s Department of Natural Resources, was concerned that asbestos had been released as the fire burned, not simply from the fallen tank pieces. Although, officials began testing for airborne gases and toxic chemicals after the explosion, they did not test for asbestos. Whitaker said the state will do its own testing. The St. Louis Post-Dispatch has been a leader in excellent journalism and accurate reports about the history and hazards of asbestos. To read the full article please refer to
In Michigan…

Relay for Life

American Cancer Society Signature activity

Lee Gianinni, along with her friends and family, are honoring the memory of her beloved husband John, by participating in their local Relay for Life on July 16 & 17 in Michigan. Relay For Life represents the hope that those lost to cancer will never be forgotten, that those who face cancer will be supported, and that one day cancer will be eliminated. To find out when this event is being sponsored in your area and details of how you can help raise funds to fight cancer, please visit:
In England…

Mick Knighton Mesothelioma Research Fund ~ By Anne Craig in England

I joined forces with the Mick Knighton Mesothelioma Research Fund in May 2003 one year after my husband David Craig succumbed to Mesothelioma. The aim of the fund, which is run entirely by volunteers, is to promote a greater awareness and also to sponsor research into the disease.


At the Funds Third Anniversary Dinner on May 21st, a cheque for £112,000 was presented to The British Lung Foundation. In celebration of achieving this fantastic amount we launched 1,000 balloons containing the personal wishes of many of our loyal supporters, over the Millennium Bridge on the banks of the River Tyne. This was an emotional but very enjoyable event.

NOTE: Anne sold nearly 100 Asbestos AWARENESS wristbands during her recent fundraising efforts.

In California … by Michael Bowker, Asbestos Victims Organization (CA) & author of "Fatal Deception"

Land development in areas where asbestos (which is a mineral) occurs naturally in the ground is a new and serious danger that could endanger hundreds of thousands of Americans in more than 20 states. Three steps must be taken immediately by the federal and state governments to help prevent a new epidemic of asbestos related diseases in these areas.

First, these regions must be surveyed thoroughly and development halted in areas, which cannot be mitigated.

Second, a uniform risk assessment model - developed by blue ribbon panel of independent scientists - must be created. This is critical to establishing safe development procedures in areas where naturally-occurring asbestos (NOA) occurs.

Third, state and federal governments should adopt the "Safe Seal Program" developed by this coalition. Currently, homeowners are unwilling to test their homes for asbestos fearing that disclosure of positive findings will reduce home values. Under the Safe Seal Program - a volunteer program - homeowners who test and clean (if necessary) their homes of fibers are awarded a "Safe Seal." Thus, the homeowners - and potential buyers of the home - are assured the home is safe from asbestos. A "Safe Seal" will undoubtedly increase the value and sales potential of the home, especially in NOA areas.
AVO and ADAO are working to have the Safe Seal Program adopted nationwide. For more information please email
In Georgia… “A Story Worth Telling: An Asbestos Tragedy” by Becky Albarado

While "A Story Worth Telling: An Asbestos Tragedy" is a twenty-first century love story, it is also one of the first books to reveal the aftermath of asbestos exposure. It is the descriptive, true narrative of how asbestos exposures adversely changed the lives of a happy Georgia couple. The reader will know Ed and Becky Albarado and vicariously experience their trials with the illness from the first symptoms to diagnosis, treatment, and aftermath. This tragedy is an appeal to all people to learn about the dangers of asbestos and encourage public support to ban asbestos.

Purchase "A Story Worth Telling: An Asbestos Tragedy” from or major bookstores.
In Libby, MT and the Nation mourns - Memorial Day

Libby Montana - On Memorial Day weekend, just four years ago, 163 white crosses were displayed at the cemetery in Libby as family, friends and the community mourned the loss of their loved ones. This was the first year that asbestos victims were so publicly acknowledged.   2002 brought 38 more names and each year the numbers continue to climb.  As of May 2005 there are at least 250 souls who have been lost in this small community of approximately 3000 people.  Each life lost is a tragedy that could have been prevented.  As a former citizen of Libby, I would like to thank the volunteers who give of their valuable time to make sure that each individual is not forgotten.  On behalf of my family, and the families of other victims, I thank Gayla Benefield, Les Skramstad, their families and the many other volunteers for this heartfelt tribute.  We have all lost so much.  My dad's name, as well as names of many others I know, is among this sea of indescribable grief.

A message from Shelly

ADAO has provided support to countless victims of malignant and nonmalignant asbestos related diseases during these past months. To many victims and their families, ADAO has become their lifeline. My sincere thanks to our tireless volunteers who are sharing one of the greatest gifts of all, time and hope to others. Please email Shelly and/or Nancy if you need or would like to offer caregiver support.

My name is Shelly. My husband was diagnosed with peritoneal mesothelioma in July of 1998. Thankfully, with aggressive treatment he is doing well. However, when he was first diagnosed, there was a whirlwind of decisions to be made about a disease we knew nothing about.

My role as a caregiver was never an easy one. We had a 12-year-old daughter that we left in Missouri as we sought treatment in NY. I always felt guilty when I wasn't there for her and exhausted being the only one in NY to take care of Craig. Feelings of anger, loneliness, guilt and fear were always weighing in on my mind.
Now, I try to be a link of hope for men and women who are dealing with these feelings of desperation. Just hearing a voice on the other end of the phone, it sometimes all some needs to get through another day.


A message from Nancy

My name is Nancy and I am the caregiver of my husband Roy who has pleural mesothelioma. He was diagnosed by accident in July, 2003, was given the course of Alimta/cisplastin as compassionate care and operated with partial removal of his right lung with scraping of the diaphragm and esophagus.

Chemo of gemzar/carboplatin was administered in Feb-April of 2004. He had been NED until April of this year when the CT scan showed some changes and a needle biopsy showed meso in the chest wall. Presently we are looking into treatment possibilities to slow the growth. We live in Northern Michigan and have an oncologist who is willing to do whatever we suggest.

During this up and down two-year period there have been times when I felt that we were definitely alone in our struggle and desperately in need of someone to talk about the disease. The ACOR site has helped, but I still feel there needs to be a place where caregivers have a place to share ideas, cry on someone shoulder and just vent. Meso is such a terrible disease and is/was so preventable. Another thought: meso is a "we" disease. It takes over your life. As Dr. Pass told me following Roy's surgery, "Meso controls your life from now on".
Asbestos Conference in European Parliament
The use of asbestos was banned in all twenty-five Member States of the European Union as of January 1, 2005. Unfortunately, the repercussions of a hundred years of widespread asbestos use remain in contaminated national infrastructures, the environment and the lungs of European men and women. It has been estimated that in the current thirty-five year period, a quarter of a million men could die in Western Europe from mesothelioma, a type of asbestos cancer. These deaths are occurring in countries, many of which had regulations to minimize hazardous occupational exposures. How much worse will the death toll be in those countries, such as many of the new Member States, where such regulations did not exist or were poorly enforced?
The European Asbestos Conference: Policy, Status and Human Rights, which is being organized by a consortium of European left-wing political parties (GUE), and the International Ban Asbestos Secretariat (IBAS) will take place on September 22 & 23, 2005 in the European Parliament, Brussels. The objectives of this event include:

  • increasing politicians’ (especially MEPs from the new Member States) awareness of asbestos-related problems,

  • exploring options for pressing European multinationals to:

    • adopt corporate codes against using asbestos in their worldwide operations and

    • establish codes of practice for dealing with asbestos products in their infrastructures,

  • and examining strategies and planning future initiatives.

For more information contact Laurie Kazan-Allen, the IBAS Coordinator, by email:

If you and your family need support, please email. You are not alone; there are many resources and representatives offering support.


GLOBAL ASBESTOS NEWS ~ Courtesy of Ban Asbestos Canada / Bannir L'amiante Au Canada

Kyla and Derek, thank you for sharing your weekly eNews with ADAO.



Please join us in welcoming our new ADAO State and International Representatives:

Sandy - Canada

Nikolaos – Greece

Nancy – Caregiver Support
Our ADAO Representatives:

  1. Reduce the intense feelings of victims’ isolation, especially upon first diagnosis of disease

  2. Represent strength and unity in Washington D.C. and at a State and Local level (as needed)

  3. Disseminate ADAO information to our members via email

  4. Serve as a state contact person for the press (as needed)

For a complete list of volunteers refer to:

We all thank you each of you for your commitment to asbestos awareness and ADAO.
Refer to our complete list of ADAO Volunteers Representatives and Updates on our website.

To All ADAO State Reps:

From Marilyn Amento, ADAO's PA Representative


Greetings from Southeastern Pennsylvania! Since Joe died of mesothelioma two years ago (7/26/03) ADAO has become a wonderful way for me to channel my grief and anger over his death. Our job as State Reps. is to get the word out that asbestos is deadly yet legal. By educating the public about asbestos, asbestos-related diseases and symptoms, we are also letting people know that asbestos is still legal. I thought asbestos was illegal until Joe was diagnosed with meso just over 2 years ago. The public probably believes it's legal also.


Here are some things that I have done or others have done to get the word out:

        A friend of mine had a mesothelioma walk. My kids and I set up a table with an ADAO banner in front of it. We sold wristbands, gave out ADAO's "Asbestos Kills & It's Legal" brochures, and asked people to sign petitions. The banner is 58" wide x 24" long, cost $90 at a local sign shop. If you want to have a banner made locally, I can send you the "vector" file for the logo that your sign maker can use.

        I sponsored the "19th Hole" at my daughter's school's Annual Golf Outing (hors d'oeuvres). As a sponsor, I was permitted to give away "Asbestos Awareness" bracelets and hand out ADAO's "Asbestos Kills & It's Legal" brochures. Since then, many people have asked me for the bracelets and the brochures. For the program booklet I wrote briefly about Joe and how we should learn from "his life and his death."

        My high school is having a whole-school reunion around Thanksgiving and was looking for sponsors. I purchased the inside cover of the program booklet and wrote something similar as the "19th Hole" booklet.

        I obtained permission from High Plains Productions to have a public showing of the movie, "Libby, Montana". Apart from ADAO, this will be a fund raiser for mesothelioma research. I plan to rent out a local movie theatre, serve hors d'oeuvres.

        When you pay bills, write on the envelope and the bill stub, "Asbestos Kills & It's Legal --".

Do you have ideas you can share for "getting the word" out? Please drop me an email at and I'll add your ideas to our next newsletter. Thanks. Marilyn Amento, ADAO's PA Rep.


ADAO remains vigilant if our core goals to prevent asbestos exposure and increase awareness about asbestos related diseases. We have translated our prevention, early warning symptoms and high-risk occupations flyers into Spanish. Linda and I have attended numerous conferences to screen “Asbestos Kills” and address the critical issues of asbestos disease awareness. We had the honor of speaking on April 28th, Workers Memorial Day in Los Angeles. Government statistics estimate 50,000 workers die from occupational diseases and Latinos experience a disproportionate number of work-related fatalities. Millions more are injured on the job Through the Internet, we have shared our slideshow around the world, recently as faraway as the Philippines.


Two years ago, just before Alan’s EPP for mesothelioma, we participated in American Cancer Society, Relay for Life. The survivor walk and memorial luminaries make this event one we can all support. In reflection, ADAO has accomplished unimaginable goals is just a year. We have seen the power of unity, and witness that change is possible.

Archived ADAO Monthly Newsletters

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“United for Asbestos Disease Awareness, Education, Advocacy, Prevention, Support and a Cure.”

ADAO is a registered 501 (c) (3) nonprofit volunteer organization.

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