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Asbestos Disease Awareness Organization Newsletter )
July - 2007  (Bi-Monthly) Volume 3 Issue 4

  ONE WORLD

One World Dedicated to Unity and Action
By Linda Reinstein

ASBESTOS KILLS - PREVENT EXPOSURE

International victims' organizations around the world continue to gain strength from unity. For decades, advocates and health and safety experts have worked to prevent asbestos diseases. ADAO is new to the arena and respectfully follows their path. The pattern is undeniably clear; organizations continue to harness grief and anger to fuel advocacy efforts.

The past two months have been incredible for ADAO - as the Voice of the Victims. We have had the honor and opportunity to represent victims and their families in the U.S. Senate Committee on Environment and Public Works (EPW) hearing and British House of Commons, published article in Asbestos Management Auditing Company (AMAC) and been interview by Lloyds List in England. We have stood proud representing the United States as a leader in education, but embarrassed we are laggards in banning asbestos.

ADAO continues to offer resources and support to patients and their families around the world. With your help through tax deductible donations and volunteers efforts we can continue our effort to prevent asbestos exposure and eliminate diseases. We cannot bring back our dead, but in loving memory of those we have lost, we can make certain their lives were not lost in vain. Thanks to our volunteers, our ADAO accomplishment summary continues to grow.

  U. S. SENATE HEARING
Full Group

ADAO Leadership Testifies Before U.S. Senate

By Laurie Kazan-Allen, Guest writer

On June 12, 2007, the U.S. Senate Committee on Environment and Public Works (EPW) heard testimony about the health effects of asbestos. Senator Barbara Boxer, the panel's chairwoman, confirmed that in 2005, 2,530 metric tons of asbestos and 90,000 metric tons of asbestos-containing cement products, gaskets, brakes and clutch parts were imported into the U.S. Furthermore, she added: "Worldwide production of asbestos actually increased in 2005, from 2.36 million metric tons in 2004 to 2.4 million metric tons in 2005." Expressing her support for Senator Patty Murray's bill, S.742, the Ban Asbestos in America Act of 2007, Senator Boxer concluded that in the face of the "terrible price" paid by ordinary Americans for the use of this toxic substance and in light of the availability of safer non-asbestos alternatives, the use of asbestos in the U.S. should be discontinued.

Senator Murray described the six year fight to get her bill enacted and asked: "How many more Americans have to die before our government finally does the right thing and bans asbestos?" Paying tribute to three of the other witnesses, Dr. Barry Castleman, Dr. Dick Lemen and Linda Reinstein, Senator Murray summed up the facts as follows:

  • asbestos is deadly
  • it's devastating families and communities
  • and every day that we wait to ban it, we're sentencing more Americans to an early and avoidable death.

READ ENTIRE STORY WITH MORE PHOTOS

Pictured above L to R are: Dr. Richard Lemen, Herman Hamilton, Linda Reinstein and Dr. Barry Castleman

  U.S. SENATE AND WHITE HOUSE MEETINGS
Group D.C.

For more than three years, ADAO has been strengthening our Congressional relationships. ADAO's independence, credibility and resources give us the ability to meet with our members of Congress to discuss the important issue we face.

We shared your stories, photos and names of support in each Senate office. The Voice of the Victims is being heard and felt.

Linda Reinstein (ADAO Executive Director and Cofounder), Doug Larkin (Communications Director and Cofounder) Dr. Richard Lemen, (ADAO Science Advisory Board Co-Chair), Herman Hamilton (ADAO Executive Assistant) and Dr. Barry Castlemen met with key Senators, Chiefs of Staff and EPW Staffers last week. We met in the offices of, Senator Durbin (D-IL), Senator Crapo (R-ID), Senator Alexander (R-TN), Senator Mikulski (D-MD) Senator Lautenberg (D- NJ), Senator Voinovich (R-OH), Senator Klobuchar (D- MN), Senator Isakson (R-GA), Senator Schumer(D- NY) and with President Bush's Domestic Policy Council in the White House for the 3rd time. We had more offices requesting meetings than our volunteers had time to arrange.

Pictured above L to R are: Doug Larkin, Herman Hamilton, Dr. Richard Lemen and Linda Reinstein



BAN ASBESTOS PETITION LINK

Please circulate the ban asbestos petition link to your family, friends, co-workers. The power of the pen is forceful in Washington D.C. and needed to pass S. 742 the Ban Asbestos in America Act.



Pictured L to R: Sen. Harry Reid (D-Nev), Sen. Patty Murray (D-Wash) and Sen. Mark Dayton (D-Minn).


U. S. CAPITOL TUNNEL WORKERS

ADAO met with the Tunnel Rats as they call themselves. We need to support these workers who have been unfairly treated and poisoned by asbestos. Please watch for action alerts in the coming months.






"DR. FRANK SPEAKS IN INDIA"

Dr. Arthur L. Frank, ADAO Science Advisory Co-Chair, returned to India this month to speak about the hazards of asbestos to students of Dr. T. K. Joshi in New Delhi. Dr. Frank will also speak at a joint management/labor safety meeting of the steel industry in Calcutta.

Pictured L to R: Dr. Arthur Frank, Dr. T.K. Joshi, Dr. Barry Castleman and Dr. T. Jaybalan

  ADAO SPEAKS BEFORE UK PARLIAMENT
Westminster Gate

By Kim Larkin, Step-daughter of Mesothelioma Victim

ADAO as honored with an incredible opportunity to unite the organization's two founding families during a special trip to London to speak before the House of Commons.  The trip represented a unique chance to present important facts to the UK Parliament, while further briding the ever shrinking gap that exists among asbestos victims' groups worldwide.

Co-founders Linda Reinstein, ADAO Executive Director, and Doug Larkin, ADAO Communications Director, both testified at a special educational asbestos seminar hosted by the All Party Parliamentary Asbestos-Subcommittee. Also on the agenda were representatives of the Forum of UK Asbestos Victims' Groups (Forum) and the Asbestos Diseases Society of Australia and individual medical experts, scientists and victims from across the globe who shared their critical research and poignant stories. The seminar for Members of Parliament was preceded by a meeting of victims' groups at which the work of the ADAO was recognized by the Forum which presented Linda with a plaque to honor her tireless efforts to fight for the rights of victims of asbestos in the United States and globally.

Linda's daughter, Emily and Doug's wife, Kim, also participated, further uniting two grieving families who have come together with countless other families worldwide to create a future that no longer knows the tragedies of asbestos. On the day before the seminar, the group toured the beautiful and historic Houses of Parliament and noticed a special exhibit being erected to honor the abolition of slavery. Linda made an immediate connection between this injustice and the corresponding injustice of asbestos. She stated, "The Parliament passed a Resolution in June, 1806 about the abolition of slavery, but its message could easily be replaced with a message about the abolition of asbestos. I would like to see leaders across the globe recognize asbestos 'to be contrary to the principles of justice, humanity and sound policy and hereby utterly abolished, prohibited, and declared to be unlawful.' Clearly, this is a message we need to implement worldwide - that the use of asbestos will not be tolerated and that victims deserve justice and lifesaving treatments."

Pictured above L to R: Kim Larkin, Linda Reinstein, Emily Reinstein and Doug Larkin in front of Westminster Gate to UK Parliament

  LOOKING AHEAD - 2008 AAD CONFERENCE
Karmasnos

The Asbestos Disease Awareness Organization's 4th Annual Asbestos Awareness Day Conference will be held on March 29 - 30, 2008 in Detroit, Michigan.

The Barbara Ann Karmanos Cancer Institute, a leading comprehensive cancer center in the U.S. will be the venue of the ADAO Conference, Global Mission: Call To Action To Prevent, Detect Treat Asbestos- Related Diseases & Trauma. This event is being made possible by the co-sponsorship of the Barbara Ann Karmanos Cancer Institute, the National Center for Vermiculite and Asbestos-Related Cancers, also based at Karmanos, and the International Ban Asbestos Secretariat (IBAS).

National Center for Vermiculite and Asbestos-Related Cancers Co-Directors are internationally renowned physicians Karmanos President and CEO John C. Ruckdeschel, M.D. and Michael R. Harbut, M.D.,MPH, FCCP, and chief, Center for Occupational and Environmental Medicine.

Conference participants will learn about the most advanced medical, occupational and environmental information available about asbestos related diseases. Presentations will focus on occupational and non- occupational exposure, public health and environmental aspects, early warning symptoms, treatment, trauma and end of life issues.

This important international conference is being held to increase awareness of asbestos-related diseases, which kill at least 100,000 workers globally every year.

Watch for more conference agenda and registration in the fall. For more information, contact AAD@AsbestosDiseaseAwareness.org.

  ADAO TO LAUNCH ONLINE VIDEO LIBRARY
video graphic

The ADAO online Asbestos Video Library (AVL), featuring 2007 AAD conference presentations, will be available online at the ADAO website on August 1st 2007.

This video library will put the important information and tools in the hands of policy makers, physicians, and advocacy groups around the world.

"We are building the ADAO video library to help save lives, comfort those in pain, and console those who suffer," said Dr. Richard Lemen.

"We are thrilled that our technology can help galvanize a community to raise awareness and funds to serve the greater good," remarked Sue Ann Taylor, President of ZeelTV, the company that produced and launched the ADAO Channel.

ZeelTV believes that the ADAO Channel will serve as a shining example of how the combination of video and internet technology can solve communication issues for hundreds of groups facing the same issues.

  IN MY WORDS
Julie

"LIVING WITH MESOTHELIOMA"
By Julie Gundlach, Mesothelioma Patient and Mother

On June 8th I had my second, and hopefully final, surgery for the treatment of my peritoneal mesothelioma. While I was told upon awakening, that the results were "good", I have been waiting a week for the "Complete Pathology". I was waiting to hear "Cancer Free". Instead I heard, "95% good", "2 spots", "no more action right now", "watch, and wait and see." I have not received bad news. Intellectually, I have received good news. The mesothelioma won't kill me--right now. Asbestos won't be the cause of my death--yet. My friends and family keep seeking from me some emotion of how I feel to be through the ordeal-- of the surgeries, the chemos, the treatment, but mostly I am just dumbstruck at the feeling that this will never be over for me, and that my fight with asbestos will continue for a long time. Asbestos diseases will chase those of us affected for the rest of our lives.

Pictured with Julie is husband Dan and lovely daughter, Madeline.

"RAISING ASBESTOS AWARENESS"
By Valerie Schwartz, Daughter of Mesothelioma Patient

To honor my Father's battle against mesothelioma, I have become very involved in asbestos awareness. When I received the letter regarding Linda's testimony in Washington D.C., I knew that this was something that was exceedingly important to me and my family, but there was less than 24 hours to submit the names!

Almost immediately I sent an email to friends, family, and my father's union asking for support for my father, and victims past, present & future. In the email I described exactly what we were going through (most already knew) and asked for not only support from them, but for them to pass the email on to people they felt would also support this cause.

What I received in response was an overwhelming and emotional response enabling me to submit almost 240 supporter's names. Over a week later I still had names pouring in hoping that it was not too late. Knowing that it is possible to make even a slight difference being a part of the movement supporting the Ban Asbestos in America Act is very rewarding to my entire family.

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead

Pictured with Valerie is her Dad, Joseph Turnbull.

  VOLUNTEER OF THE MONTH
Margy

Margy Urnberg - ADAO National Representative Director and Nevada State Representative

I joined ADAO in 2005 as the Nevada State Representative.   I grew up in Libby Montana and have learned a great deal about the pain and anger from those who suffer from asbestos related diseases.  Being a volunteer for ADAO is my way of "paying it forward" to those who no longer have a voice.  It has been a privilege to offer resources and support to those in need around the world, help organize the past two ADAO Conferences and assist in the program presentations as well as welcome new volunteers.



Long before "paying it forward" was a common phrase, my father demonstrated by example exactly what it meant.  He was a hard working, honest, charitable man who labored every day to support his family in an environment that was destined to take his life. Mesothelioma claimed him in 1987.  I have been angry at the asbestos industry, not only for what they did knowingly to my dad, but to thousands of others. I was privileged to speak with Les Skramstad, a well known asbestos activist, just prior to his death in January of this year and made a promise to continue to make the world aware.  Les and my dad both worked for WR Grace in 1959 on the same crew and it is my belief they both received their lethal dose of asbestos on the first day of their employment.

To honor the memory of my dad and others, I established a memorial tribute page.  It started with 4 names.  As of this writing, there are now 340 victims who are honored in memoriam from around the world as well as my hometown of Libby, Montana.  They will never be forgotten. You may view it HERE

  ASBESTOS VICTIMS SUPPORT GROUP FORUM UK
U.K.Forum

By Tony Whitston, Chair of the Asbestos Victims Support Group Forum, UK

In July 2005, nine asbestos victims' groups from the North of England and Wales formed a campaigning body called The Asbestos Victims Support Groups Forum (the Forum). While the impetus for the formation of this body was a proposal by Cape PLC (formerly Cape Asbestos), of which the groups were justifiably skeptical, the aims of the Forum transcended this one issue.

Forum members wished to improve the range of services and advice available to victims and create the opportunity for victims to share their experiences and offer mutual support. The Forum works alongside the Parliamentary Asbestos Sub-Committee to raise the profile of issues which affect the daily lives of asbestos victims and their families.

We welcome this opportunity to provide information about the Forum, which is a collective of nine asbestos victims support groups in England, whose purpose is to work collectively to provide one voice for asbestos victims.

We are open to all bone fide support groups in the UK. As independent charities, we are distinct from solicitors' interest groups, deriving our legitimacy from our work with, and for, asbestos victims. We work in close conjunction with leading doctors, nurses and researchers who treat patients with asbestos related disease, and who refer patients to us for advice and support.

Advising competently within a complex legal and state benefit system, we operate in condensed geographical urban areas to provide a bespoke home visiting service for, in particular, mesothelioma sufferers and their families. We provide a comprehensive home visiting, telephone or postal advice service for those affected by other asbestos related diseases.

Campaigning is an essential part of our remit, and our support group members, drawn from families of sufferers of asbestos related diseases, play a vital role. We raise money for medical research and we aim in particular for legal change to improve compensation, for improvements within the benefit system, and with others we campaign to eliminate asbestos worldwide.

  MEMORIAL TRIBUTES
TRIBUTE

ADAO is committed to honoring the courageous victims who have lost their fight against asbestos related diseases. Margy, our ADAO Nevada Representative has provided a name/photo tribute website for all victims.

If you would like Margy to add a name and/or photo of your loved one, please email her directly at: Margy- NV@asbestosdiseaseawareness.org

Tributes, may be viewed, Here.

 IMPORTANT LINKS

PURCHASE WRISTBAND AND DVD

ADAO WRISTBAND
Awareness Wristbands
Show your support of Asbestos Awareness and help keep ADAO alive by purchasing an official ADAO "Asbestos Awareness" blue wristband, Today.
USD $5.00 USD

ADAO SURVIVOR DVD
DVD
Though our 60 second "Survivor" commercial was created primarily for web distribution, we have had numerous DVD requests. We, now have them available.. Whether for your own personal use, as a training tool or just to show your support for ADAO. Order your copy Today.
USD $10.00 USD




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