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!

SOURCE: myMeso | Mesothelioma Blog

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!!!”

SOURCE: myMeso | Mesothelioma Blog

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.

SOURCE: myMeso | Mesothelioma Blog

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

SOURCE: myMeso | Mesothelioma Blog

H.B. 211 would enact section 5.2239 of the Revised Code to read as follows:

Sec. 5.2239. The month of September is designated as “Mesothelioma Month” to bring attention to mesothelioma, a rare form of cancer that develops in the mesothelium, a protective sac that covers most of the body’s internal organs, and is commonly linked to asbestos exposure.

Rep. Yuko has a special passion for supporting quality of life initiatives for Ohio’s working families. He has established himself as an advocate for increased health care access, and is strong supporter of Multiple Sclerosis awareness. IN 2006 he introduced and achieved passage of H.B. 379, which designated March as MS Awareness Month in the state of Ohio. He is chair of the House Commerce and Labor Committee.

If you live in Ohio, please contact your legislative Representative and ask him or her to support this bill designating September as Meothelioma Month in Ohio!

Contact the Ohio Legislature.

SOURCE: myMeso | Mesothelioma Blog

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.

SOURCE: myMeso | Mesothelioma Blog

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!

SOURCE: myMeso | Mesothelioma Blog

Debbie was diagnosed with mesothelioma in November 2006, at which time her doctor gave her only a few months to live. That was when Debbie began looking for new treatments. She began chemoembolization in May 2008.

Chemoembolization, which is being pioneered by Dr. Thomas J. Vogl at J.W. Goethe University Hospital at Frankfurt University, introduces chemotherapy directly into a tumor, where it is basically sealed off so that it is concentrated in the area of need. The clinical trial started three years ago, and will continue for about two more years. The treatment is only available at the clinic in Germany.

Recently, BBC News featured Debbie and her efforts to bring chemoembolization to the UK, and beyond.

Watch the video.

SOURCE: myMeso | Mesothelioma Blog

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.

SOURCE: myMeso | Mesothelioma Blog

This is truly wonderful and amazing news, particularly for a cancer like mesothelioma, which has no known cure. This sounds pretty darn close for Debbie, who is considered in remission with this amount of tumor gone.

Those who have been following Debbie’s story and have read the Q&A with Dr. Vogl we posted on this site know that chemoembolization is a procedure currently in clinical trials. The process involves introducing chemotherapy directly to the tumor, and basically trapping it there, concentrating it where it is most needed. Dr. Vogl is head of the Department of Diagnostic and Interventional Radiology at J.W. Goethe University Hospital at Frankfurt University.

The clinical trial is currently treating between 300 and 400 patients with primary and secondary lung cancer annually, and about 20 mesothelioma patients.

For more information, see the Q&A with Dr. Vogl.

Read more of Debbie’s story at her blog, Mesothelioma & Me.

SOURCE: myMeso | Mesothelioma Blog