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!

Yesterday at the 2009 International Symposium on Malignant Mesothelioma, the theme was all about hope. The day focused on patients, caregivers, and those who had lost loved ones to mesothelioma. The symposium is presented annually by the Mesothelioma Applied Research Foundation, which is a national non-profit organization dedicated to ending the sufferng caused by mesothelioma by funding mesothelioma reserach, educating patients, and advocating for funding for mesothelioma reserach.

The highlight of the events yesterday happened early in the day, but its effect reverberated for the rest of the day and into the evening’s banquet. The Tribute of Hope Ceremony was held yesterday morning. Those who had lost someone they love to this horrible asbestos-related cancer brought a photograph of their loved one and added it to a photo collage. The names of all those who had lost their battle were listed on panels lining the walls - too many panels - and grieving folks filled the space around them, lighting candles in memory of someone dear who didn’t have to die.

Although the rest of the day was filled with informative seminars about reserach, treatment, nutrition, wellness and coping, the weight of that wall could not be forgotten. Candles glowed and you couldn’t help looking over, reading the list, hating mesothelioma and wondering just WHY nobody seems to know about this lurking killer.

This is why we need more awareness.

The day ended with a Gala Celebration of Hope. Awards were presented to those who have done outstanding work in the fight against mesothelioma. From MARF, here is a list of those honored this year:

• The Pioneer Award emphasizes the contributions of Dr. Robert Taub, MD PhD, whose treatment protocols and vision have shown remarkable results and have been the basis of hope for many mesothelioma patients.
• The Bruce Vento Hope Builder Award, named for the late Minnesota Congressman who died from mesothelioma in 2000, acknowledges the support and initiatives of Terry Lynch, International Vice President, Political & Legislative Director and Health Hazard Administrator of the International Association of Heat and Frost Insulators and Allied Workers.
• The Volunteer of the Year Award honors Craig and Shelly Kozicki for being an inspiration to the mesothelioma community through their continued dedication in raising research funds and providing support and hope to others faced with mesothelioma. Craig, who had been diagnosed with mesothelioma in 1998, died in May of this year.

At the close of the awards presentation, a microphone was passed around the room to allow mesothelioma patients in attendance to share their stories. There were stories of victory and remission, tears and fears, laughter, and anger. A cry began to ring out as each fighter took the microphone. Turning, they would point at the looming Tribute Wall and declare, “I am not going on that wall!!!”

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!

Early last year, we asked folks reading this site to rally around lung cancer survivor John Atkinson, who had entered a contest sponsored by Golf Digest to play in a celebrity foursome at the US Open Golf Tournament. John won that contest, and last June he joined celebrities Matt Lauer of The Today Show, entertainer Justin Timberlake, and Dallas Cowboys quarterback Tony Romo on the links. We are sad to announce today that yesteray Atkinson lost his battle with lung cancer, and passed away at age 40.

John’s story touched a lot of people, and did so much to help raise awareness about lung cancer, which is the leading cancer killer. His strength and determination to fight this disease, and his evident love for his family, his friends, and life itself, touched so many people.

While mesothelioma is not usually considered traditional “lung cancer,” as it most often affects the lining of the lungs but can also affect the lining of the stomach or, more rarely, the heart, we still rally around the lung cancer community in its call for more research, more funding and more awareness. Today, we join the Lung Cancer Alliance in remembering this remarkable man who, as he fought his own personal battle, also dedicated himself to fighting the stigma of lung cancer, and fighting for a cure.

This morning Matt Lauer presented a tribute to John Atkinson on The Today Show. Take a moment to watch this short video tribute to a remarkable man. Thoughts and prayers go out to his family and friends.

A video produced by WorkSafe BC (the Workers’ Compensation Board of British Columbia), which is dedicated to promoting workplace health and safety for the workers and employees of the province, provides a fascinating glimpse of how asbestos fibers affect the body. British Columbia is the westernmost Canadian province, and WorkSafe BC serves areas including Vancouver Island, Lower Mainland, BC Interior and BC North.

The short video mainly illustrates asbestosis, a severe scarring of the lungs caused by the inhalation of microscopic asbestos fibers. However, these fibers also can cause mesothelioma, a deadly cancer that most often affects the lining of the lungs, but which also can affect the stomach and/or the heart.

According to WorkSafe BC, since the year 2000, more workers in BC have died from asbestos disease than any other workplace injury.

Watch the video!

A new process that treats asbestos with heat and chemicals, called thermochemical conversion, could help ensure greater safety for asbestos removal projects, particularly those on a large scale. The process is being discussed in several Pennsylvania communities that are looking at ways to clean a more than 60-acre site contaminated with asbestos.

The new technology has been developed by ARI Technologies, Inc., a company dedicated to solving environmental waste management problems. The new thermochemical conversion technique has been certified by the EPA as an alternative to asbestos disposal. According to the company web site, the process can destroy PCBs, dixoin and immobilize metals.

According to a report in the the Times Herald, at a recent town meeting in Montgomery County, Penn., ARI’s president of technologies Dale Timmons said the process “involves using heat and chemicals on a rotary hearth to convert asbestos into volcanic materials.” He said the new substance does not release harmful fibers, which is the main danger of asbestos, so that it can be used in construction aggregate.

Usually, when asbestos is crushed or otherwise disturbed, it releases microscopic fibers that can be inhaled and that lodge themselves in the body. These fibers can cause asbestosis, a severe scarring of the lungs, or mesothelioma, a deadly cancer that affects the lining of the lungs, stomach or heart. Asbestos is the only known cause of mesothelioma.

The Times Herald says that while the EPA has signed off on thermochemical conversion for asbestos destruction, it is unclear at this time if the agency has given full approval for the process for asbestos removal projects.

ARI officials said the Pennsylvania project would require that between 150 and 300 tons of asbestos would need to be processed every day, 24 hours per day, to clean up the affected site, and that it would take nearly 10 years to process the estimated 3 million TONS of asbestos in the affected area, which covers three municipalities.

Asbestos handling would be conducted in an air-locked structure that would have to be built over the affected area, and the company would do constant air monitoring, the Times Herald reports. Cost would be about $135 per ton, with funds for the project likely coming from the federal government, according to the report.

As Asbestos Awareness Week - April 1-7, 2009 - draws to a close, the Asbestos Disease Awareness Organization (ADAO) is encouraging the mesothelioma and asbestos awareness community to recognize the victims of asbesots disease around the world.

Tonight, on Tuesday, April 7, everyone is encouraged to join in a candle-lighting at 6 p.m. PST (8 p.m. CST). The event will signify Unity, Hope and Remembrance of those we love, and will be a time to honor those who have been lost to asbestos disease.

Many people are surprised to learn that asbestos is still not completed banned in the United States. It is allowable at contents of 1 percent or less, despite studies that show that there is no safe level of asbestos exposure. The only known cause of mesothelioma, a deadly cancer most often affecting the lining of the lungs, is exposure to asbestos.

Tonight, join us in remembering those who are struggling with mesothelioma and other asbestos disease, and those who have lost their fight. One of the greatest tragedies of asbestos disease is that it doesn’t have to happen. How many more have to suffer before this deadly substance is finally eradicated?

A new report prepared by the Institute of Cancer Research and the London School of Hygiene and Tropical Medicine examines the occupational, domestic and environmental mesothelioma risks in Britain. The findings are not good news.

The study was conducted for the Health and Safety Executive, an organization whose mission is to prevent death, injury and ill health in Great Britain’s workplaces. The HSE says this is the largest global study of its kind, including more than 600 patients with mesothelioma and 1,400 healthy people, interviewed to examine the rates of mesothelioma among different occupations in the UK.

Statistics resulting from the study include the following:

• One in 17 British carpenters bornin the 1940s will die of mesothelioma
• Plumbers, electricians and decorators born in the 1940s who worked in their trade for more than 10 years before they were 30 have a risk of 1 in 50 of dying of mesothelioma
• The risk for other construction workers born in this generation is 1 in 125.
• For every case of mesothelioma, asbestos also causes about 1 case of lung cancer; the risk of asbestos-related lung cancer for carpenters in this age group is 1 in 10.
• In other industries, about two thirds of British men and one quarter of British women worked in jobs with potential asbestos exposure.
• Among the general UK population, even those who did not experience occupational exposure still have a 1 in 1,000 risk of mesothelioma, indicating unrecognized environmental asbestos exposure, due to its widespread use in the 1960s and 1970s.

The report estimates there are more than 2,100 people diagnosed with mesothelioma in the UK every year, with about 5 times as many cases in men as in women.

Read the full report.

Law.com, an online publication of Incisive Media providing legal news and information, recently featured a story highlighting a unique program at the University of Montana, in which journalism students and law students are covering the W.R. Grace & Co. criminal trial currently underway in Missoula, Montana.

Students are blogging at an original site, dubbed The Grace Case Project, as well as posting updates on Twitter under the name UMGraceCase. Journalism students write as news reporters covering the story as the jury hears it, while law students, all in their second or third year, explain the “legal nuances and strategies of the trial,” Law.com reports. The blog features an icon of a quill pen when the post is from a journalism perspective, or the scales of justice when written by a law student.

The criminal trial against W.R. Grace & Co. began Feb. 19 at the Russell Smith federal courthouse. The company, along with former company officials, are charged with conspiracy, obstruction of justice and knowing endangerment of the Clean Air Act. The government says Grace knew its vermiculite mine in Libby, Montana, produced dangerous asbestos that put the health of its workers and the nearby townspeople at risk.

Hundreds have died in Libby as a result of exposure to asbestos, suffering a number of serious asbestos related diseases including asbestosis, a serious scarring of the lungs, and mesothelioma, a deadly cancer that affects the lining of the lungs and/or the abdomen.

The Norm Kulig 2Young2Go Foundation will hold a 10k/5k run and 1 mile walk on Saturday, April 4, to raise awareness of mesothelioma and raise money for a cure. Proceeds from the race will go to the Mesothelioma Applied Research Foundation (MARF). The race and related activities will be held from 8 a.m.-1 p.m. at Wissahickon High School in Ambler, Pennsylvania.

Pre-registration online is $22, registration day of the race is $32. There also are sponsorship opportunities.

The Norm Kulig 2Young2Go Foundation is dedicated to increasing the awareness of environmental related causes of cancer, further the scientific research of such cancers and promoting the environmental cleanup of areas contaminated by cancer causing substances. The organization was founded by the siblings of Norm Kulig, who died at age 42 as a result of mesothelioma.

On its web site, the family states, “Our hope and goal is to increase awareness and provide much needed funds for a cancer that affects a large population but goes relatively unrecognized. The southeastern part of Pennsylvania was a hot bed of asbesots manufacturing for nearly 100 years. There are still significant waste deposits in the area that are in need of remediation. A strong potential currenly exists that these waste deposits may continue to infect and cause disease.”

If you cannot participate in the race, consider becoming a sponsor. You can sign up at the web site, or contact Bill Kasenchar at bill@2young2go.org or call 215-313-8698.