More than 230 people gathered in Washington, D.C., last week to attend the 6th Annual International Symposium on Malignant Mesothelioma, presented by the Mesothelioma Applied Research Foundation. This was the largest attendance to date for the event, and 170 of that number also participated in Advocacy Day events, visiting their Congressional delegates on Capitol Hill.

This annual symposium is “for everybody” affected by mesothelioma. This includes patients, caregivers and family members, and those who have lost a loved one to mesothelioma, as well as advocates and scientific and medical experts. The event is designed to provide education about new research and treatment, to assist meso patients and their families and loved ones with coping skills and a network of support, and provide advocates with the tools to help make an impact in the effort to raise awareness about mesothelioma and the dangers of asbestos exposure, and to raise funds for research.

“I don’t think any community knows more about holding onto hope in the midst of difficult circumstances than mesothelioma patients and their families, ” said MARF executive director Chris Hahn. “But there is still a perception of mesothelioma as an orphan disease. It is overlooked, by the government, by the average person, despite the huge presence of asbestos in our society,” he said.

Mesothelioma is a deadly cancer that affects the lining of the chest wall or, more rarely, the abdomen, and, in very rare instances, the heart. It is caused by exposure to asbestos, and may have a latency period of up to 40 years or more from the time of exposure until symptoms manifest. It is difficult to diagnose, and often is misdiagnosed until too late for effective treatment. Even if diagnosed early, treatment is often difficult, and there is currently no known cure.

The Mesothelioma Applied Reserach Foundation is the largest independent program for mesothelioma reserach and support in the world. It operates a competitive grant program that awards up to 10 grants, or $10 million, each year to research projects most likely to lead to better treatment.

The Foundation is a non-profit organization whose main mission is dedicated to “eradicating the life-ending and vicious effects of mesothelioma.”

MARF needs funding. This is the only organization dedicated to the research and treatment of mesothelioma, but it is facing the same struggles that many other charitable foundations are facing in this tough economy – donations are down, funding is stretched thin. The foundation received 59 grant applications in 2008 – programs that WANT to explore and investigate mesothelioma in search of earlier diagnosis, better treatment methods and, ultimately a cure. But the Foundation was only able to fund five new programs in 2008.

It is estimated that 3,300 new cases of mesothelioma will be diagnosed each year.

Mesothelioma, once considered an industrial disease affecting primarily older men, is being diagnosed in younger and younger people. In 2008, a 3-year-old girl was diagnosed with mesothelioma. Mesothelioma is everybody’s problem. We cannot afford NOT to support mesothelioma research.

For more information about the Mesothelioma Applied Research Foundation and how to make a donation, visit them online.

The Foundation also needs volunteers. There are a number of ways you can help, from advocacy efforts to planning a fund-raising event, to simply helping put out the word about mesothelioma and the effects of asbestos exposure. You can find that information on their web site, too.

This was my first experience at the Symposium, and it was emotionally and intellectually exhausting, and inspiring, and motivating. I met some amazing people who, despite being personally devestated by mesothelioma, are determined to keep fighting. I’m amazed by this great group of folks.

I plan to add many more stories from information presented at the conference, and from the people I met there, in the next several days, so please check back! It’s too much to tell in one post!

I am in Washington, DC, to attend the 2009 International Symposium on Malignant Mesothelioma, which is being presented by the Mesothelioma Applied Research Foundation. This morning a group of us will go to Capitol Hill to talk to our legislators about a complete ban on asbestos in the U.S., and funding for mesothelioma reserach and treatment. Thank you to everyone who signed the petition to ban asbestos! If you have not yet signed, it’s not too late! Click on the link on the home page and add your name and, if you like, some thoughts on this issue.

More updates to come – the Symposium continues through Saturday afternoon.

In researching for my upcoming visit to Washington, D.C., to attend the International Symposium on Malignant Mesothelioma, I was encouraged to find some news from the office of Congressman Dennis Kucinich (D-OH). He has recently gone on the record with strong objections to the continued use of asbestos in America and around the world. Asbestos, of course, is linked to mesothelioma as its only proven cause.

In a news release from his office on Capitol Hill, Kucinich says, “Asbestos is a highly toxic material that has no place in construction projects here or anywhere else, especially when viable alternatives are available.” In the past, asbestos was used for fire protection, but there are other modern materials available now that preclude the necessity for using asbestos. Still, it is included in many construction materials today, including roofing shingles.

The statement was spurred by a letter of inquiry that Kucinich spearheaded, to urge The World Bank to finalize a construction guidance that would drastically reduce the use of asbestos in new construction projects. The report was commissioned in 2006, and completed in 2008, but its release has been stalled. Kucinich, joined by four other members of Congress, urged World Bank to release the guidance immediately.

The World Bank is not a bank in the usual sense, but  is a source of financial and technical assistance to developing countries worldwide. It is made up of two development institutions owned by 185 member countries. The World Bank carries out projects and provides a wide variety of analytical and advisory services to help meet the development needs of individual countries and the international community.

Regarding asbestos, the 2009 Guidance says, “Health hazards from breathing asbestos dust include asbestosis, a lung scarring disease, and various forms of cancer … Mesothelioma, a signal tumor for asbestos exposure, occurs among workers’ family members from dust on the workers’ clothes and among neighbors of asbestos air pollution point sources. Some experimental animal studies show that high inhalation exposures to all forms of asbestos for only hours can cause cancer.”

Kucinich says, “Global asbestos use is on the rise at the very time it should be eliminated.”

Read the full text of the 17-page Guidance on Asbestos.

As those of you who follow this blog probably already know, I’ll be traveling to Washington, D.C., next week to attend the 2009 International Symposium on Malignant Mesothelioma, which is being presented by the Mesothelioma Applied Research Foundation (MARF). On Friday morning, a regular part of the conference is a Tribute Ceremony to honor those who have lost their struggle against mesothelioma. This is a poignant time to recognize those who were so needlessly lost, and to provide a way to communicate the urgent need for funding for research and treatment.

During the Tribute Ceremony, MARF will create a collage of photos of these loved ones who have passed away. I would be more than honored to carry your photo to Washington to add to this Tribute. You may send your photo electronically, by email, and I will make color prints to add to the collage. Please let me know if you would be interested in this. You can email mymeso@gmail.com or email me directly at wendi.lewis@beasleyallen.com.

On Thursday, I also will have the opportunity to visit Capitol Hill to ask our congressional representatives to provide federal funding for mesothelioma research and treatment, and for the ban of asbestos. Please take a moment to sign the petition for these endeavors – there is a link on our home page.

I look forward to attending the Symposium next week, and will be blogging from the conference, which will provide a wealth of information about the latest progress in mesothelioma research and treatment. The conference begins on Thursday, June 25, with the visits to Capitol Hill, and continues through Saturday featuring distinguished physicians, researchers and advocates. I’m sure there will be a lot of valuable information to share.

God bless you all!

Last week I shared the story of Shanna Kurtz, a 30-year-old woman in Texas who was diagnosed with peritoneal mesothelioma in 1999. She is battling the disease, and recently underwent a surgery to remove some tumors from her abdomen and her liver. She was in the hospital in Washington, DC, for more than a month before finally returning home on May 7.

Shortly after her return, abdominal pain sent her back to the hospital. She was good enough to email me to let me know she had suffered from a condition called illeus, which is when the intestines become paralyzed. She stayed in the hospital in Texas for a few days until finally coming home again on May 13. She said she’s focusing on getting stronger and gaining weight, but is frustrated by the  setback after all her hard work to recover from her surgery.

You can check in on Shanna’s progress by reading her journal on the CaringBridge web site and email her some encouraging words at goddesslorraine@aol.com. I know she’d really appreciate hearing from some folks in the meso community!

There was a fundraiser in her honor last weekend, and there’s an ongoing effort in Texas called “Cooking for the Cure” to help raise money for Shanna’s treatments.  Cheri Travis, who is one of the organizers of Cooking for the Cure, reports Shanna is scheduled for another surgery in August, so fund raising efforts continue.

Cooking for a Cure was started by Cheri and two other friends who like cooking, and wanted to use their interests and talents in the kitchen to raise money for Shanna. They gather at one person’s house and prepare food, which they distribute in exchange for donations.

“It’s really spread by word of mouth of people who buy our food,” Cheri explained in an email to me. “Plus, we have fun doing it and helping raise funds for our friend.”

The group is based near Victoria, Texas, so if you live in that area, check out this unique project!

Cheri said there also is another fund raising benefit in Shanna’s honor planned for September 18 in Victoria. I’ll let you know the details when I have them.

In the meantime, if you live near Victoria and would like to purchase food from Cooking for the Cure, you can email Cheri at cetfrog@gmail.com.

Or, if you would still like to make a donation to help with Shanna’s treatment, you can send it to:

Cooking for the Cure
17114 Eagle Hollow Drive
San Antonio, TX 78248

Today I came across the story of a courageous young woman in Texas who is battling peritoneal mesothelioma, an extremely rare form of the cancer that affects the lining of the abdomen. More common is pleural mesothelioma, which affects the lining of the lungs.

Shanna Kurtz was diagnosed in 1999, at age 20, after suffering from several years of unexplained abdominal pain. Doctors who originally suspected a fibrosis tumor discovered a grapefruit-sized tumor in her abdomen, which was diagnosed as peritoneal mesothelioma.

Shanna’s journal on CaringBridge.org documents her experiences through the last several years as she has fought to keep this cancer at bay. It is heartbreaking to read about someone so young who has to face this experience. In one journal entry from October 2008, she reflects on how it feels when people tell her how strong she is, when she doesn’t have any other choice. She states frankly that she is jealous of people who have the option to choose what they will do with their lives, and reflects on so many doors that are closed to her.

Despite the inevitable depression, Shanna is remarkable. Upon her diagnosis told her only about 20 percent of patients survive beyond a couple of years. Determined to be in that 20 percent, she is beating the odds.

Most recently, Shanna’s journal chronicles a surgery on March 26 in Washington, DC, at the Center for Surgical Oncology at the Washington Cancer Institute, Washington Hospital Center.  Dr. Paul Sugarbaker removed a number of tumors, including one that had covered part of her liver. Following the surgery, the doctor filled her abdomen with chemotherapy medication in a process called postoperative intraperitoneal chemotherapy. The solution comes into contact with areas the tumor has touched, in an effort to erradicate those cells and prevent recurrance.

Shanna was in the hospital for a little over a month, finally returning home to Cuero, Texas, on May 7.

This weekend, there will be a benefit in her honor, to help offset the medical expenses of the surgery. The event will feature a bike ride and barbecue. The bike ride will leave from Grace Lutheran Church in Victoria, Texas, on Saturday, May 16, at 2 p.m., and will be followed by an evening of dancing, an auction, food and music, which will start around 4 p.m. at Lindenau Dance Hall, which is about 33 miles from Victoria. Cost to participate is $30.

If you are in the area, please attend this event!

In addition to the weekend event, there is an ongoing project called “Cooking for the Cure,” in which three friends prepare food in exchange for a donation to help Shanna. In its first month, the project raised more than $1,100.

For more information about Cooking for the Cure or the Shanna Kurtz Benefit Barbecue, or to make a donation to help Shanna, contact Cheri Travis at cetfrog@gmail.com.

Libby, Montana, residents were devastated Friday afternoon when a jury returned a judgment aquiting W.R. Grace & Co. of criminal charges regarding its asbestos mining facility in the town. The case began in 2005 when a federal grand jury handed down an unprecedented indictment, alleging a 30-year conspiracy to defraud the government and knowingly endanger the residents of Libby. The indictment alleged Grace company officials knew they were exposing Libby workers and residents of the nearby town to asbestos fibers, and that they knew the exposure posed a dangerous health risk to those workers and residents. Grace denied the claims, saying they were diligent in efforts to protect workers and to meet government regulations for managing the substance.

Asbestos exposure causes serious disease, including asbestosis, a severe scarring of the lungs that worsens with time and impairs the ability of its victims to breathe, and mesothelioma, a deadly cancer that affects the lining of the lungs and, more rarely, the stomach and heart.

According to the report in The Missoulian, statistics compiled by the Center for Asbestos Related Disease (CARD), located in Libby, indicate that to date 227 community members have died from asbestos disease, and there are more than 1,800 active cases resulting from exposure to the deadly fiber. The newspaper notes that “the study also attributes scores of deaths to non-occupational asbestos exposures, and finds that 77 people who never worked at Grace’s mine in Libby have died of asbestos disease since 1998.”

David Uhlmann, who is former chief of the Justice Department’s environmental crimes section, who was instrumental in developing much of the early indictment against Grace, said the Government’s case against Grace was severely limited by the court, which did not allow much of the evidence to be presented to the jury. This included some of the most incriminating internal memos, he said.

The Post quotes Uhlmann as saying, “The verdict is a fair reflection of the evidence that jurors were allowed to hear. But the question that hangs over this case is what would have happened if the government were allowed to present all of the evidence that it had amassed in this multi-year investigation.”

According to a report in The Washington Post, in a court filing the government acknowledged it “has committed discovery violations in this case,” which led to many rulings excluding its evidence and weakening its case against Grace.

The Missoulian reported the reaction of two Libby residents familiar to our readers – Gayla Benefield, who was perhaps the first to raise the outcry about the dangers of deadly asbestos in the town, said the company has “gotten away with murder.” And the paper quotes our friend Mike Crill, who worked in the asbestos mine and has lost family members to asbestos related disease and suffers himself from asbestos disease.

The Missoulian says Mike cried upon hearing the verdict. The paper quotes him: “What did they die for? What am I dying for?” Crill sobbed. “They are guilty of killing us.”

The folks who run this web site were excited to take part in a special event on Saturday, April 4, to raise awareness of mesothelioma, and share information about the dangers of asbestos exposure. The event was the “Bite the Tail Off Cancer” crawfish boil, and it was sponsored by the Junior Executive Board of the American Cancer Society here in Montgomery, Ala.

The timing of this event was perfect, as it coincided with Asbestos Awareness Week, which is April 1-7. The week has been recognized nationally by U.S. Senate Resolution, and also locally by Montgomery Mayor Todd Strange. Thank you, Mayor Strange, for supporting Asbestos Awareness in the Capital City! The Mayor signed a proclamation on April 1 in recognition of the special week.

At the crawfish boil event, which was held in Downtown Montgomery at Riverwalk Park, we were able to provide information about asbestos exposure and safety, as well as information about mesothelioma. I talked to two gentlemen who have been exposed to asbestos, both in their jobs. We also visited with a woman who recently lost her husband to lung cancer, as a result of smoking and also asbestos inhalation in his work.

Many people were surprised to learn that asbestos is still not completely banned in the United States. We provided a petition they can sign, which I will take to Washington, D.C., in June when I attend the Mesothelioma Applied Research Foundation’s International Mesothelioma Symposium. During that event, I will have the opportunity to meet with my Congressional delegates to lobby for an asbestos ban.

We’re adding an online petition to this site, too, which should be up in the next couple of days. I’ll let you know when it’s active, and I would love to have everyone sign!

The Mesothelioma Applied Research Foundation has announced the date for its 2009 International Symposium on Malignant Mesothelioma. The annual event will be held June 25-27 in Washington, D.C.

The Symposium highlights the latest advances in research and treatment for patients and caregivers, offers psychosocial support to them as well as those who have lost someone to the disease, and provides significant advocacy and volunteer opportunities for those who are intent on eradicating mesothelioma.

Activities usually include educational forums on a number of medical topics related to mesothelioma, as well as instruction on outreach topics including volunteerism, fundraising, peer support and advocacy, to help those who want to make a difference learn how to be most effective.

While specifics on this year’s event have not been announced, last year’s event also included opportunities for attendees to lobby their congressional delegation on behalf of asbestos and mesothelioma awareness and funding. There also was a gala dinner to honor those living with meso, and recognize outstanding volunteers and advocates for their hard work.

As in past years, scholarships for Symposium registration fees, as well as for transportation and accommodations, are available for patients, family members and caregivers who would like to attend.

For more information, visit www.CureMeso.org.

The Environmental Protection Agency (EPA) Science Advisory Board (SAB) Asbestos Committee held public meetings July 21 and 22 in Washington, D.C., to discuss changes in the way it measures the risk posed by inhalation exposure to asbestos. Results of this meeting are coming under fire, as environmental groups, labor safety leaders, physicians, scientists and politicians object to the EPA’s proposed revised evaluation standards.

According to recent report in the Seattle Post-Intelligencer, there were 20 experts appointed to the SAB’s asbestos panel, charged with evaluating the validity of the EPA’s plan to change how the toxicity of the six types of asbestos regulated by the government differ in danger. Its findings would be submitted to the White House Office of Management and Budget (OMB).

According to the PI report, scientific advisors say the EPA used the asbestos panel to submit new studies that contradict longstanding research into the dangers of asbestos. The new studies say chrysolite, in particular, the most common type of asbestos, isn’t dangerous and doesn’t cause mesothelioma.

PI quotes Dr. David Egilman, an occupational medicine specialist, who testified at the public meeting, as saying the new study was financed by mining and other asbestos-related industries, and said the studies have no scientific credibility.

Another vocal spokesperson at the hearing was Sen. Patty Murray, who sponsored S. 742, the Ban Asbestos in America Act of 2007, which passed the Senate on Oct. 4, 2007. Currently, it is the companion bill to H.R. 3339, the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act, sponsored by Rep. Betty McCollum, which currently is in committee in the House of Representatives.

Sen. Murray has long been an advocate for a total asbestos ban, calling for better worker protection. The PI quotes Sen. Murray as telling the committee, “I’d like the political appointees at the EPA to look into the eyes of a mesothelioma patient and say that asbestos isn’t dangerous. It appears that this administration is once again putting politics before public health.” Murray is currently chairwoman of the Senate Employment and Workplace Safety Subcommittee.

The EPA asserts the new system is needed to improve how asbestos-contaminated Superfund sites are evaluated. The organization can move forward with its proposal without approval from the OMB or the SAB, if it so chooses.