As part of the International Symposium on Malignant Mesothelioma, held last week in Washington, D.C., 13-year-old Lexi Miletto presented a keynote address to more than 200 top-level cancer researchers, scientists and physicians, as well as mesothelioma survivors, caregivers and their families. The Symposium is an annual event presented by the Mesothelioma Applied Research Foundation (Meso Foundation). Lexi’s grandfather, Joe Miletto, died from mesothelioma three years ago.

When her grandfather passed away, 9-year-old Lexi, who lives just outside Allentown, Pennsylvania, channeled her grief into a letter-writing campaign, hoping to raise awareness of mesothelioma. According to an article in The Morning Call, a publication that serves Pennsylvania’s Lehigh Valley, Lexi wrote medical research organizations, political leaders including President George Bush, and even television celebrities like Oprah Winfrey, hoping to spread the word about asbestos danger and mesothelioma.

This year, the Meso Foundation invited Lexi to give the keynote address Friday, June 27, at its International Symposium. The Morning Call quotes Chris Hahn, the foundation’s executive director, as saying, ”We wanted to show the full spectrum of the disease’s effect on families. How inspiring it is that this young gal going into eighth grade has this concern for a much bigger national problem.”

The Mesothelioma Applied Research Foundation (MARF) will hold its International Symposium on Malignant Mesothelioma 2008 in Washington, D.C., June 26-28. The annual event 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.

According to Rob Grayson, director of marketing for the Meso Foundation, the event actually started as a purely scientific event, geared toward researchers and scientists, with technical presentations. However, at the time, there were no informational or educational events like it, and they found that patients, families and caregivers wanted to attend.

“Initially, these people would come and sit in on these high-level presentations by scientists, with very technical presentations. We saw the interest and our meeting has now evolved into more of a patient meeting, the scientists speak in more layman’s terms, and we’ve added programs to reach out to people who are also interested in the community of support and the activism that takes place,” Grayson said.

The advocacy element is a new piece of the symposium, added last year when the meeting coincided with debate in the Senate on the Ban Asbestos in America Act, S. 742, sponsored by Senator Patty Murray (D-WA).

“The day we lobbied, they took an administrative vote, and it passed in the Senate. So we’re going back to Washington this year,” Grayson said.

Advocacy efforts this year will include a rallying cry to the House of Representatives to move quickly to pass the legislation in the House, which bans asbestos and provides research funding for mesothelioma. Last week, the Foundation issued an action alert in support of The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007 (H.R. 3339), the companion to the Senate bill. The bill includes $10 million for mesothelioma research.

“Normally we’d hold the Symposium in a different city each year, but it’s almost the same timing as last year, with the bill pending, this time in the House, so we’re back to Washington,” Grayson explained.

Those attending the Symposium can register to participate in the advocacy efforts, and the Meso Foundation will arrange for them to meet personally with their congressional delegate, and will provide a training session to help advocates prepare for the meeting.

In addition to lobbying for passage of the House bill, Symposium advocates will request that the Senate’s Defense Appropriations Subcommittee maintain, for the second year, mesothelioma’s eligibility to compete for medical research funding from the Department of Defense. In 2007, the DoD appropriated $50 million and included mesothelioma as a research priority for its Peer Reviewed Medical Research Program, effective in the 2008 budget. The Meso Foundation is working for continuing and increasing funds for mesothelioma research in the 2009 defense appropriations bill.

“There currently is no ban on asbestos, so companies can use it however they see fit. We’ve pretty much stopped mining here, but asbestos is still used in about 3,000 products that you could go out and buy right now. Even if we banned asbestos tomorrow, it probably won’t change the rate of sickness for the next 50 years, due to the latency period of asbestos. That’s why the funding for research is so important,” Grayson says. “Advocacy and the call for a ban on asbestos raises awareness, and raises money for research, which is what we need to deal with the illness itself,” he said.

In addition to advocacy, the Symposium again will feature an educational program, with sessions covering topics including Peritoneal Mesothelioma, Pleural Meso Surgical Options, Emerging Therapies, Optimizing Patient Care, and Scientific Advances in Meso Research. Other educational programs will provide 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.

A Gala Dinner will honor those people living with meso, and recognize outstanding volunteers and advocates for their hard work and dedication to raising awareness. The dinner will feature a unique guest speaker - Seventh grader Lexi Miletto, the granddaughter of Joseph Miletto, who died in 2005 of peritoneal mesothelioma.

Scholarships for Symposium registration fees, as well as for transportation and accommodations, are still available for patients, family members and caregivers who would like to attend. Contact the Meso Foundation at www.curemeso.org or call 805-563-8400 for details.

The Mesothelioma Foundation was started in 1999, by attorney Roger Worthington. Unfortunately, Grayson says, there was an initial stigma because of his association, with people suspicious the Foundation was attempting to gather clients for his firm, so he removed himself from the Board of Directors and the Foundation was re-established as a non-profit, 501(c)3 organization. Today, with 8 staff members, the organization raises $2.5 million annually and funds more than $1 million in research projects.

“Currently, most of our funding goes to seed money to help researchers who have good ideas for treatment to validate their work, and take it to the NIH to get additional funding for the next step of the research,” Grayson explained. “We hope very soon that we’ll be able to fund clinical trials.”

This week the Mesothelioma Applied Research Foundation (MARF) announced that a National Mesothelioma Virtual Bank (NMVB) is now operative. The Meso Foundation’s advocacy efforts, in cooperation with medical and academic institutions, helped make this tissue bank a reality.

According to a release on MARF’s web site, the Virtual Bank, which was four years in development, is the first mesothelioma research resource of its kind. The NMVB provides mesothelioma tissue samples from a variety of institutions, clinically annotated in a readily accessible database, to researchers in all mesothelioma investigations.

The Meso Foundation is the national organization dedicated to eradicating mesothelioma as a life-ending disease by funding the highest quality and most promising research projects from around the world through our rigorous peer-reviewed process; helping patients connect with national meso experts and obtain the most up-to-date information on treatment options; and advocating in Washington, D.C., for federal mesothelioma research funding to stop this national tragedy.

The Foundation has funded more than $5 million in mesothelioma research projects around the world, to date.

According to the MARF release, the NMVB is a collaborative effort of multiple organizations, including the Center for Disease Control and Prevention and the National Institute for Occupational Safety and Health, which together provided the initial $1 million grant for starting the tissue bank.

The release goes on to describe the NMVB as a bioinformatics system that combines assorted data from mesothelioma-related specimens into a single, annotated engine. The goal of the tissue bank is to expedite the discovery of preventive measures, novel therapeutic interventions and ultimately cures for mesothelioma.

For more information on the National Mesothelioma Virtual Bank, visit www.mesotissue.org.

The Meso Foundation will host its annual symposium to educate patients and families on the latest advances in meso research and treatment this year in Washington, D.C., June 26-28.

Amy Peterson of the Lung Cancer Alliance posted to the LCA message board / support group on Inspire.com yesterday to let cancer survivors know about a new program that aims to provide hope and cheer during a difficult time. The LCA is partnering with Compassionate Communications, a company dedicated to connecting people in need of support and encouragement with people who want to reach out to them.

Compassionate Communications will operate a web site, which will be launched sometime this month, that will feature photos and information about people struggling with cancer, including mesothelioma, and other life-threatening illnesses. Visitors to the site can view profiles, and if they choose to register (for a fee of $25), they will receive five Hallmark greeting cards with pre-paid postage, to send to patients to encourage them, and other support materials. Twenty-five percent of the registration fee will benefit patient-serving organizations.

There is no charge for a patient to register his or her profile. The program operates in cooperation with Hallmark Business Expressions (a subsidiary of Hallmark Cards, Inc.).

Patients may download an “opt-in” registration form and waiver directly from the web site, or call 888-337-6416. The waiver must be completed and returned by mail or fax to Compassionate Communications, which will then provide participants with an account so they can set up their personal profile on the site. There is a place on the waiver form for patients to designate the patient-assistance organization they would like card-sender registration fees to benefit.

You may also get more information or ask questions by emailing Amy at the Lung Cancer Alliance at apearson@lungcanceralliance.org.

As part of my work to raise awareness about mesothelioma, other asbestos related diseases and lung cancer, I talk to a lot of people facing these diagnoses. I also read a lot of message boards and forums that deal with these issues and provide a sounding board for patients, families, caregivers and even medical professionals working in this field.

A couple of the best forums, in my opinion, are the Lung Cancer Alliance Survivors Support Community, and the many forums sponsored by the LUNGevity Foundation. Recently, both groups have been tackling a difficult topic - how to find joy in daily living when faced with a diagnosis that is often grim.

They ask, “what is the positive side of lung cancer? IS there a positive side?”

Many people credit the forums themselves as a positive, providing a network of new friends, and helping them to find a place where they can be uplifted by other people’s stories of success. They say forums like these help them find relief by sharing their own fears and finding answers to their questions, and by helping them learn they are not alone.

Many echo each other in their feeling that their experience with cancer has taught them to value each day, and not to wait for tomorrow to accomplish goals. That surely would be a blessing for all of us to learn, wouldn’t it?

Some lung cancer survivors handle their challenges with humor. Yesterday I mentioned Debbie, who lives in the UK, who started her own web site about her battle with mesothelioma, and who nicknamed her tumor “Theo,” and provides reports on his condition and sometimes addresses him personally in her blog.

A poster on the LUNGevity forum recently found the humor in a YouTube video, in which two teenage girls spoof a Justin Timberlake rap song, “My Love,” with their own version, “My Lung,” in which they express their affection for their lung health. It seems they made the video as part of a high school health project.

On a similar track, a friend who knows I write about lung cancer sent me a link to an odd little web site called “I Heart Guts,” which features, among other things, plush toys and t-shirts depicting happy, smiling internal organs, including a shirt bearing the slogan “I Lung You.”

What about you? If you have been diagnosed with mesothelioma or another asbestos disease or lung cancer, or if you are helping a family member or friend, how do you find peace and inspiration? What helps you?

One of the things I’d like for this site to do is to provide a resource for people struggling with meso, and a place to network and share ideas. Post your story to the Meso Map, or leave a comment to let me know what inspires you. Tell me if there’s another forum you like, or a web site with good information that I should add to my page’s blog roll.

This site is here for you.

Public Justice recently filed suit in federal and California state courts against CBS Broadcasting, Inc., Planet Toys, Inc., and several retail manufacturers in response to their production and marketing of CSI toy kits containing asbestos. Asbestos has been linked to mesothelioma, a deadly lung cancer, as well as other cancers, asbestosis and pulmonary fibrosis.

CBS licenses the toy, which is based on its popular CSI: Crime Scene Investigation ™ television program. Planet Toys is the manufacturer.

According to a Public Justice press release, the federal complaint, filed in U.S. District Court in Los Angeles, alleges that CBS and Planet Toys were negligent in their quality control measures and that they promoted the CSI toys although they contained a hazardous and potentially lethal carcinogen.

In November 2007, the Asbestos Disease Awareness Organization (ADAO) released results of a study of a number of products, including the CSI: Crime Scene Investigation ™ Fingerprint Examination Kit. It was found that the CSI toy’s fingerprinting powder contained asbestos. The fingerprinting powder containing asbestos also can be found in related CSI toy kits, the CSI: Crime Scene Investigation ™ Field Kit and the CSI: Crime Scene Investigation ™ Forensic Lab Kit.

The story was covered in the news media, including CNN, in December 2007. On Feb. 21 CNN did a follow-up report and noted that the Planet Toys had not yet issued a recall.

Public Justice reports that in a meeting including representatives from ADAO, CBS and Planet toys in December 2007, CBS and Planet Toys agreed to remove some of the toys from store shelves, and to work with Public Justice to further test the toys. However, Public Justice reports that months later, there has been no joint testing, Planet Toys continues to deny the products contain asbestos, and there has been no recall.

The Public Justice press release quotes Linda Reinstein, executive director of ADAO, who says, “Our pleas for the companies to do the right thing have fallen on deaf ears. It is unacceptable and unnecessary to have asbestos in toys, and especially in powder form, its most dangerous state. Most Americans falsely believe asbestos has been banned, but our recent product testing results prove asbestos remains a threat to public health.”

The federal complaint is a class action suit that asks the defendants to “provide refunds to consumers, pay for asbestos testing of toys that have been opened, and pay for appropriate medical treatment for consumers who have been exposed to asbestos,” according to the release. The state lawsuit “seeks civil penalties for violations of the law, in addition to injunctive relief.

Read the full text of the Public Justice press release here. This site also contains links to the federal and California state complaints.

Public Justice is a membership-supported law firm with more than 3,500 members, comprised of trial lawyers, other attorneys, and public interest advocates worldwide.

ADAO is a nonprofit organization dedicated to the mission of “asbestos awareness, education, advocacy, prevention, support and a cure.”

Meso victims, unite! The Lung Cancer Alliance recently sent an Open Letter to presidential candidate Hillary Clinton following remarks she made pledging funding for breast cancer, asking her to also prioritize funding for lung cancer.

Following is the text of the open letter, along with information about how to contact Clinton’s office. The LCA is urging everyone affected by lung cancer, including mesothelioma, to join their voices in this effort to finally secure the funding that lung cancer has long deserved. It is time to make this a national priority!

An Open Letter to Presidential Candidate Hillary Clinton

April 9, 2008

Yesterday you announced what you would do for breast cancer should you be elected president. When will you announce what you would do for lung cancer?

The $300 million plan you unveiled yesterday to find a cure for breast cancer should be at least doubled for lung cancer since it is killing nearly twice as many women each year as breast cancer. Most women do not even know this.

You do, Senator Clinton, and you specifically cited that fact as part of the justification for Senate Resolution 87, which you co-sponsored and supported and which was passed August 2, 2007. The resolution was a strongly worded policy statement by the Senate calling on the President to declare lung cancer a public health priority and to implement a comprehensive interagency program to reduce lung cancer mortality by 50% by 2015.

The Resolution contains a page and a half of the grim statistics justifying the demand for priority action and specifically notes the enormous under funding of lung cancer research, which receives only seven cents for every federal dollar spent on breast cancer.

Of course we would like to see a cure for breast cancer as we would for all cancers. Thanks to the billions in federal dollars alone that have been invested in breast cancer research and early detection, the 5-year survival rate for breast cancer is now 88%.

Having been massively under-funded, as the resolution notes, lung cancer’s 5-year survival rate is still only 15%. That will no longer be tolerated.

We are not asking for a cure at this point. Just a 50% reduction in the mortality rate for lung cancer, the most lethal cancer, which is now killing more men and women each year than breast, prostate, colon, kidney, melanoma and liver cancers combined.

One in five women being diagnosed with lung cancer now have never smoked at all and they seem to be getting diagnosed younger. Why aren’t women demanding more research? Because they do not know the facts.

You spell out the facts so eloquently in S. Res. 87 and you lay out in the resolution a comprehensive program for lung cancer that is actually quite similar to the one you proposed yesterday for breast cancer.

When will you announce your comprehensive plan for lung cancer? We thank you and look forward to hearing from you on behalf of all those with and at risk for lung cancer, their families, caregivers and friends.

Lung Cancer Alliance

To contact Clinton’s office:

Hillary Clinton General Campaign Headquarters

4420 North Fairfax Drive

Arlington, VA 22203

Ph: 703.469.2008

Fax: 703.962.8600

comments@hillaryclinton.com

press@hillaryclinton.com

As I mentioned earlier this week, I spent the past weekend in Detroit, Michigan, at the 4^th Annual Asbestos Awareness Day Conference, presented by the Asbestos Disease Awareness Organization (ADAO).

The conference was held at the Barbara Ann Karmanos Cancer Institute, which is the location of the National Center for Vermiculite and Asbestos-Related Cancers, co-directed by Dr. Michael Harbut and Dr. John Ruckdeschel, both of whom spoke at the ADAO conference.

While it might seem obvious, Dr. Harbut said, a key to diagnosing and treating asbestos disease is an emphasis on a medical approach.

Dr. Harbut explained that the Karmanos program “approaches asbestos disease from a purely medical standpoint, which includes taking into account any risk factors, employing state-of-the-art scanning equipment and a multidisciplinary, research-driven approach to early detection and treatment. This includes consideration of non-mailgnant or sub-clinical asbestos disease.

“Diseases that are ‘not hurting you yet,’” he said.

Focus areas at the National Center for Vermiculite and Asbestos-Related Cancers include the establishment of a schema for high resolution CT (HRCT) classification, measurement of pleural plaque volume, examination of psycho-social aspects of asbestos disease, testing new treatments including osteopontin and SMRP, and compiling a comprehensive database of disease, diagnosis and treatment.

The Center encourages anyone at risk from asbestos exposure to seek testing for early detection.

Dr. Ruckdeschel said barriers to successful asbestos disease treatment include a sense of nihilism in the medical community, the idea of giving up on the patient when mesothelioma is diagnosed due to its traditionally high mortality rate. There is a sense of providing only “quick fix” supportive care, he said.

Other challenges include a lack of treatment centers with a documented track record, lack of large standardized treatment trials, and a paucity of research investment, Dr. Ruckdeschel said.

The Center predicts an epidemic of vermiculite and asbestos-related cancers in the near future, as the latency period of asbestos disease exposure is reached, and as asbestos exposure spreads around the world, particularly in third-world countries.

“One life lost to asbestos disease is tragic. Hundreds of thousands of lives lost is unconscionable,” Dr. Ruckdeschel said.

For more information, visit the Karmanos Cancer Institute online or call 1-800-KARMANOS.

Today, April 1, is Asbestos Awareness Day. On a national level, the Asbestos Disease Awareness Organization (ADAO) is working in Washington, D.C., and around the world, to increase awareness and secure a true ban of all asbestos in the United States. Currently, asbestos is allowable in products at 1% or less by weight.

ADAO secured a senate resolution declaring April 1 as Asbestos Awareness Day, and April 1-7 as Abestos Awareness Week. You can visit the ADAO online.

Today also is Asbestos Awareness Day in Montgomery, Alabama, as designated by mayoral proclamation, signed by Montgomery Mayor Bobby Bright. The local effort strives to bring the message of asbestos awareness and education to the community and to bring attention to the national effort to ban asbestos.

Asbestos exposure can lead to asbestos-related disease including asbestosis, lung cancer and malignant mesothelioma. Many symptoms of mesothelioma and other asbestos diseases do not appear for 20 or more years, making it difficult to diagnose early. For this reason, the cancer is often diagnosed in late stages, making it too often deadly.

In the U.S. current statistics show 2,000-3,000 people are diagnosed with malignant pleural mesothelioma each year, and 10,000 Americans or more die each year from all asbestos-related disease.

One of our readers, Erica Iacono, works with the New York Volunteer Chapter of the Mesothelioma Applied Research Foundation (Meso Foundation). She has asked us to help get the word out about an event scheduled in East Meadow, NY, April 13. Here is her release. If you live in that area, please get out and support this great effort!

NEW YORK VOLUNTEER CHAPTER OF MESO FOUNDATION HOSTS THIRD ANNUAL5K WALK FOR HOPE

MERRICK, NY: The New York Volunteer Chapter of the Mesothelioma Applied Research Foundation (Meso Foundation) will hold the third annual “5K Walk for Hope” on April 13, 2008 at 10am in Eisenhower Park, located in East Meadow, NY. Over the past two years, the event has raised more than $30K and the volunteer team hopes to build on that success. All proceeds will go to the Meso Foundation, a 501 (c) (3) organization that has awarded more than $5 million in grants for mesothelioma research since 2000.

Mesothelioma is an extremely rare cancer caused by exposure to asbestos and most often affects the lungs, although it can also invade the stomach and groin areas. In the United States, 2,500 to 4,000 patients are diagnosed with mesothelioma annually, yet the disease has yet to find the national spotlight for research and funding.

The 9/11 tragedy in New York City demonstrates the continued, long-term threat of mesothelioma. Estimates of the amount of asbestos destroyed in the terrorist attack in Manhattan range as high as 1,000 tons. The impact pulverized this asbestos into tiny, microscopic fibers to which the firefighters, rescue workers, and other heroes of 9/11 were exposed, as well as workers, residents, and school children who returned to the area in the weeks and months following.

After mesothelioma’s long latency period, which is 15-50 years, the risk of cancer among those most heavily exposed could reach as high as one in ten. This year alone has seen the number of reported cases of illness and death of Ground Zero workers increase and unfortunately that number will only continue to rise, which is why more research is needed.

Registration for “5K Walk for Hope” is $15. Those who are interested in participating should contact Janice Malkotsis at (917) 751-2776. For more information about The Meso Foundation, please visit www.curemeso.org.