It seems that I am surrounded by stories of strong women who are enduring the loss of their husbands as a result of mesothelioma. In the middle of last week, I had lunch with my friend Cheryl Cotton, in Anniston, Ala., who lost her dear husband, Virgil, to mesothelioma three years ago. She and I met at the Meso Symposium in Washington, D.C., in June and have been corresponding by email ever since, but it was a treat to get to visit her in person. I’ll be featuring her story on this site in September, during the week leading up to Mesothelioma Awareness Day, on Sept. 26.

I was also contacted by a woman in Texas, who hoped that I could put her in touch with another woman who had lost her husband to mesothelioma. Her anniversary was approaching, and she needed to reach out to someone who would understand. Of course Cheryl willingly contacted her to lend an ear.

Then, on Friday I posted a story about a photographer in Australia, Chris Ireland, who has created an exhibition of stunning images of mesothelioma widows, called Breathe. The fourteen portraits capture the sadness and strength of these suffering ladies, and also hope to capture a bit of the men they loved. Ireland spent two years on the project, becoming closely acquainted with each of the ladies he photographed. I contacted Chris and was delighted to learn that he does have plans to bring the exhibit to the UK and to the U.S. in the coming months, and I hope that myMeso can be a part of that. I will keep you posted.

Next, I came across a story in the Morgan County Herald, a community newspaper based in McConnelsville, Ohio, which featured the story of Karen Huffman, who recently donated $3,000 to her area Kiwanis-Jaycees for the construction of a new walking trail at the community park in Malta in honor of her late husband, Danny, who passed away from mesothelioma on July 31, 2006, just four months after his diagnosis.

According to the report in the Herald, Mrs. Huffman says her husband most enjoyed his daily walks, not just for exercise, but as his quiet time to commune with God. She said he walked two or three miles each day except Sunday. It was during one of these walks that he became breathless, and unable to make it back to his home. At that point, she says, he couldn’t deny something was terribly wrong.

“Danny would have been the first walker on that trail,” the Herald quotes Mrs. Huffman as saying about the new park.

I wonder, as I read this latest news, why it seems there are so many stories of this kind around me now. Have they always been there, but my work with mesothelioma has made them more visible to me? I hope that it means that there is more awareness in the United States, and around the world, of mesothelioma, and the dangers of the asbestos that causes it.

I hope, somehow, that this site can make connections or provide the news that will bring some sort of ease, or at least a sense of community, of not being alone. It is a terrible sisterhood these women share. But perhaps just knowing there is someone else who understands will bring a small measure of comfort.

An Australian artist, photographer Chris Ireland, has created an emotional exhibit titled “Breathe,” which captures the feelings of 14 women who have lost their husbands to mesothelioma and other asbestos cancer and disease. Ireland spent time with each woman in an effort to understand her particular story, and to create a photo that would attempt to convey not only her emotions, but a bit of the man she loved.

The exhibit debuted at the Australian Centre for Photography on July 17 (ended Aug. 22) and will next be featured at Latrobe Regional Gallery beginning Sept. 5 and running through October 4.

According to a World News Australia report about the project, Ireland was inspired with the idea for the exhibit after learning about mesothelioma in his mid-teens when a friend’s father passed away from the disease. He feels that the fact that mesothelioma is currently incurable adds to the poignancy of the loss, and says he hopes that by sharing these ladies’ stories, he can help raise awareness about the dangers of exposure to asbestos.

The World News quotes Ireland as saying, “…these ladies have gone through pain, they deserve to be heard and other people should avoid the same process.”

More information about the exhibit, including its striking images, can be found at Chris Ireland’s web site.

The Latrobe Regional Gallery is located at 138 Commercial Road, Morwell VIC. The exhibit will be open Monday-Friday from 10 a.m.-5 p.m. and Saturday and Sunday from 11 a.m.-4 p.m.

It was recently announced that the Mesothelioma Applied Research Foundation (Meso Foundation) was selected to the first ever list of top-rated cancer fighting nonprofit organizations. The list was part of the 2009 GreatNonprofits Cancer Fighters Awards, which asked people to submit reviews and ratings about nonprofits serving the cancer community. This list is unique in that this is the first list compiled by people who have actually experienced these organizations’ work.

The contest asked for reviews throughout the month of July, and was sponsored by GreatNonprofits, GuideStar and Planet Cancer. Awards were presented to organizations in various geographical areas, and also to some organizations based on their annual budget, so that organizations with smaller operating funds would not have to compete against those with major funding. The Meso Foundation, based in Santa Barbara, Calif., was named Best of West.

The Meso Foundation is a collaboration of patients, families, physicians, advocates and researchers working to find a cure for mesothelioma. They provide education for patients and families, raise awareness about mesothelioma and asbestos exposure, connect people into a supportive community, and raise funding for mesothelioma reserach.

According to a news release on the Meso Foundation web site, Perla Ni, CEO and Founder of GreatNonprofits is quoted as saying, “There are so many great nonprofits that don’t have an advertising budget and are not household names. Through this first-ever list of top-rated cancer nonprofits, you can see how some of these nonprofits literally have saved lives. Donors and volunteers who are interested in fighting cancer can now see which nonprofits are really making a difference.”

Visit the Mesothelioma Applied Research Foundation Great Nonprofits review page to read testimonials from people served by this great organization at http://greatnonprofits.org/reviews/mesothelioma-applied-research-foundation-inc.

A complete list of the 2009 GreatNonprofits Cancer Fighters Awards is available on the Cure Meso web site at www.curemeso.org.

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