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!

Today was busy with meetings at Capitol Hill, asking legislators to support a total ban of asbestos in the United States, funding for mesothelioma research, and that they designate September 26 as Mesothelioma Awareness Day.

The day began with a briefing from Chris Hahn, the executive director of the Mesothelioma Applied Research Foundation (MARF), with latest numbers about federal funding for meso research (WAY below every other cancer) and information about goals for new legislation. A bill to ban asbestos and fund meso research has been before the Senate for the past SEVEN YEARS. In 2008, S774, more commonly known as the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act, passed the Senate, and in 2008 its companion, HR3339/6903, made it to committee in the House of Representatives, but never made it to the floor. It died in committee when the session ended and we now have to start all over.

Beginning at 11 a.m., I met with aides from Congressman Bobby Bright’s office, as well as the offices of Senators Richard Shelby and Jeff Sessions. I was disappointed that I was unable to meet with any of the legislators personally, but two of the aides were particularly enthusiastic about our efforts, and the third was amenable, so I have high hopes. Now I will simply begin to pester people until we finally see some legislation! I left copies of our petition in support of these efforts with each of the Congressional offices, so I hope they will listen to our voices!

Tomorrow the sixth annual International Symposium on Malignant Mesothelioma will address the latest topics in mesothelioma research and treatment. 170 people attended the Advocacy Day today, and 230 people will attend the conference tomorrow and Saturday, the largest number yet.

Chris Hahn told us, “The way that we’re going to cure this disease is through community. On Advocacy Day, each person’s voice makes a real difference, and each of you speak for hundreds who could not be here.”

I hope our legislature is listening.

The folks from this web site, www.myMeso.org, are excited that we will have a table this weekend at the American Cancer Society “Bite the Tail Off Cancer” Crawfish Boil event. The event is presented by the ACS Junior Executive Board and Riverfront Facilities, City of Montgomery. If you are going to be in Central Alabama on Saturday, please come by and see us!

The event is planned to be held at Riverwalk Amphitheater in Downtown Montgomery, Ala., on Saturday, April 4, from 2 p.m.-8 p.m. and will feature all the crawfish and sides you can eat, live music, and activities for children. Tickets are $20 in advance or $25 at the door, with proceeds benefitting the American Cancer Society. (Advance tickets can be purchased through etix.xom)

myMeso’s sponsor, Beasley Allen Law Firm, is also a sponsor for this event, along with Alfa, Alfa Dental, Morgan Keegan, Jackson Thornton, Dr. Kynard Adams, Price Trailer Sales, Southeast IV, ServisFirst Bank, Harmon Dennis & Bradshaw, Cumulus Broadcastin, Seay Seay & Litchfield, AKD Printing, and AAF-Montgomery.

It is particularly fitting for myMeso to present information about mesothelioma and asbestos awareness during this event, as April 1-7 has been declared Asbestos Awareness Week both in the City of Montgomery and nationally, by U.S. Senate Resolution.

In case of inclement weather, the event will be held at the historic Train Shed, which is located adjacent to the Riverfront and Riverwalk. Come see us, rain or shine!

Yesterday I posted some information about a mesothelioma awareness and fund raising event coming up in Pennsylvania, in cooperation with the Bridgeport Speedway. The event is the first ever “Meet and Greet” that will allow race fans to meet the drivers and see the cars of Bridgeport Speedway.

Today I talked to event organizer Bill Thomas, Sr., of Bill Thomas Racing. He said the event was born of necessity, when he discovered in August that he has mesothelioma. Already active with his son, Bill Jr., on the racing circuit, an event tied to the sport seemed a natural fit.

“Racing with my son is a big part of my life,” he said. “I had to retire as a result of having meso, and I felt like I really needed to do something and give back so I came up with this event.”

The Meet & Greet will feature a number of drivers from the Bridgeport Speedway, located in Bridgeport, New Jersey, which bills itself as “The Fastest Dirt Track in the East.” Ms. Motorsports 2009 also will attend the event. A silent auction will help raise money for mesothelioma research, with proceeds going to the Mesothelioma Applied Research Foundation.

The event is set for March 7 and 8 at the Granite Run Mall in Media, Penn.

More information about featured drivers and other events will be available in the next few weeks prior to the event. You can also follow the new Bill Thomas Racing Blog.

If you are interested in donating items for the silent auction, or volunteering in any other way, please contact Bill Thomas at 610-329-0239 or email him at billthomasracing@comcast.net.

The Asbestos Disease Awareness Organization (ADAO) has announced its Fifth Annual International Asbestos Awareness Conference is set for March 28, 2009, in Manhattan Beach, Calif. The purpose of the event is to educate the public about the dangers of asbestos, ban its use and encourage research efforts to improve treatment options for asbestos diseases like mesothelioma.

The conference will feature prominent physicians, scientists, safety and health directors, as well as survivors, who will present current information about the status of asbestos in the U.S. and worldwide. Discussion will include facts on exposure, asbestos-related diseases and how to prevent them, and where to turn for help.

In addition to the main event on Saturday, there will be an evening reception on Friday, March 27, featuring musician Jordan Zevon, whose father, legendary singer-songwriter Warren Zevon, died of mesothelioma in 2003; and a Unity and Hope Remembrance Brunch on Sunday, March 29.

Five individuals will be honored for their outstanding work in raising awareness about asbestos exposure: U.S. Senator Barbara Boxer for her work to ban asbestos in the U.S.;  Margaret Seminario, AFL/CIO, for her efforts to unite, educate and empower asbestos victims and workers; Dr. Stephen Levin, MD, for his research into the social and medical impact of asbestos; and Pralhad Malvadkar and Raghunath Manwar for their work with victims of asbestos exposure in India and worldwide.

The conference is presented by ADAO, the Barbara Ann Karmanos Cancer Institute and the International Ban Asbestos Secretariat.

For more information or registration, visit ADAO online.

Sunday, Sept. 7, is the fifth anniversary of Warren Zevon’s death. The Grammy award-winning composer and musican, who penned such popular tunes as “Werewolves of London,” passed away in 2003 from mesothelioma, at age 56.

The following videos are from Zevon’s last appearance on the David Letterman show in October 2002, where he was the only guest for the program, a tribute to his life and work. During the interview with Letterman, Zevon quipped that facing death had taught him to “enjoy every sandwich,” a reminder to savor each moment of life.

These videos provide a wonderful portrait of this talented musician. He is greatly missed.

Warren Zevon’s son, Jordan, also a talented musician, is an active advocate for mesothelioma and asbestos disease awareness, and spokesperson for the Asbestos Disease Awareness Organization.

A young woman believed to be Britain’s youngest mesothelioma patient, at age 28, passed away last week, just two years after her diagnosis, according to a story in the Daily Mail. Leigh Carlisle, who grew up in Manchester, had peritoneal mesothelioma, affecting the lining of the abdomen.

Because of its long latency period – from 20 up to 50 years – mesothelioma usually occurs in older people, age 50 and older. For that reason, Carlisle’s mesothelioma eluded diagnosis early on, with doctors mistaking her symptoms for ailments such as irritable bowel syndrome (IBS), pelvic infection and endometriosis. Doctors were stunned when they diagnosed peritoneal mesothelioma.

Because of her young age, researchers believe Carlisle may have come in contact with asbestos – the only known cause of mesothelioma – in her school, or possibly from a factory yard near her childhood home, which she used as a shortcut on her way to school each day. Asbestos sheets were cut at the yard.

According to the report, about 2,000 people in Britain die from mesothelioma each year, a figure that has doubled since 1992. The paper reports that 90,000 people in the UK will die from the disease, and another 90,000 from other asbestos-related lung diseases.

Additionally, the report says about 200 school workers have died or are suffering from illnesses related to asbestos exposure in schools in Britain, where it is estimated that about 13,000 schools still contain asbestos.

Following her diagnosis, Carlisle worked for mesothelioma and asbestos awareness. Her family requests that donations in her memory be made to the Oldham Cancer Support Centre in Failsworth:

Oldham Cancer Support Centre
Failsworth Primary Care Centre
Ashton Road West
Failsworth
M35 0AD
Tel: 0161 906 2940

This is a reminder to those who haven’t yet contacted their representative in U.S. Congress about H.R. 3339, the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act. Please take the time to do this right now! It’s very important to let your Representative on Capitol Hill know that you support this measure to finally ban asbestos in the U.S. and provide funding for mesothelioma research.

The bill is currently in committee, with the House Committee on Energy and Commerce. Even if your district’s representative is not on this committee, it is important to let him or her know that you support the bill so that they know how to vote. The more voices they hear from their constituency, the better chance they will pay attention when this finally comes to the House floor.

If your representative IS a member of this committee, it is even more important. Many bills “die” in committee, never making it to a vote of the full House or Senate. Please make sure your representative helps get this bill approved in committee and to the floor for its vote.

My representative, Terry Everett (2nd District, Alabama), acknowledged his receipt of my request with a letter, in which he said he will keep my thoughts in mind should the bill make it to the floor, although he is not a member of the Committee on Energy and Commerce.

According to information provided by Everett’s office, H.R. 3339 would require several actions to be taken by the federal government in addressing asbestos and its harmful effects. The Environmental Protection Agency (EPA) would establish a plan to increase awareness of the dangers posed by asbestos-containing materials in homes and workplaces and encourage participation in research and treatment endeavors of asbestos-related disease patients.

The bill also would require the disposal of asbestos-containing materials within two years and the prohibition on the importing, manufacturing, processing or distributing of asbestos-containing materials, except for specific exemptions sought by the Department of Defense and National Aeronautics and Space Administration.

If you are not sure of the representative for your Congressional District, visit the House of Representatives online. You can also find out here if your representative is a member of the House Committee on Energy and Commerce.

Please take the time to do this today. Your one voice is SO important. Let it join thousands of others to finally make a real difference.

I was very sad today to learn that Rear Admiral Phil Coady, U.S. Navy (Ret.) passed away yesterday, June 30. Admiral Coady served as Chairman of the Board for the Lung Cancer Alliance, and was kind enough to share his story with this blog in April. A non-smoker, Coady was diagnosed with non-small cell lung cancer in 2005. The diagnosis spurred him to advocacy, particularly on behalf of Veterans.

Although Coady didn’t suffer from mesothelioma, he was very much aware of the risks posed by asbestos. His work during his time in the Navy very often put him in contact with the substance, he said, and seven of his friends died from mesothelioma since his retirement. In addition, for 10 years following his retirement, Coady worked as president of the Navy Mutual Aid Association, a non-profit veterans benefit group and life insurance service, where he said he saw what he thought was a disproportionate amount of lung cancer deaths.

When he began investigating lung cancer research efforts, Adm. Coady was shocked at the relatively few dollars spent by the Veterans Administration and the U.S. Department of Defense, considering the number of veterans affected by the disease. He also was disappointed at the overall lack of funding for lung cancer research in comparison to spending on other cancers, especially since lung cancer is the leading cancer killer.

He dedicated himself as Chairman of the Board for the Lung Cancer Alliance, fighting the battle for lung cancer awareness and funding under the organization’s motto “No More Excuses. No More Lung Cancer.” He led efforts in lobbying Congress to make lung cancer a national health priority.

Just last week, Coady saw some of the first fruits of his efforts, when Senators Dianne Feinstein (D-CA) and Chuck Hagel (R-NE) introduced legislation in the U.S. Senate creating and authorizing at least $75 million for lung cancer research. This is the first ever multi-agency, comprehensive program targeted at reducing lung cancer mortality.

Perhaps the best memoriam Adm. Coady could receive is for supporters of lung cancer awareness and research to contact their U.S. Senators NOW and ask them to add their support to S. 3187, the Lung Cancer Mortality Reduction Act. Remember him and take action for those to come after him! You can view his obituary here.

Blessings to Adm. Coady’s family at this time of loss.

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.”