UK Justice Secretary Jack Straw

Earlier this month, Chris Hahn, executive director of the Mesothelioma Applied Research Foundation (Meso Foundation) expressed his support for the recent announcement from the UK that it plans to not only endorse compensation for mesothelioma victims, but to promote research and treatment. In a news release, Hahn praised the U.K. for its recognition “that society’s obligation and moral responsibility to remedy the tragic legacy of decades of asbestos use requires funding research to develop effective medical treatments.” Then, he asked the all-important question: “Will the United States follow?”

Hahn’s praise and plea followed remarks by the U.K.’s Lord Chancellor and Secretary of State for Justice, Jack Straw, who has been outspoken about the government’s role in caring for workers harmed by asbestos on the job.  Straw issued a statement Feb. 25, 2010, in response to an ongoing debate over the government’s decision on the question of compensation for pleural plaques.

Although pleural plaques, which are small areas of fibrosis in the pleura of the lung caused by asbestos exposure, indicate that a person has been exposed to asbestos, they generally do not cause any significant change in lung function. As a result, the Law Lords on Oct. 17, 2007 determined that people who have pleural plaques, but no other asbestos-caused illness, are not eligible for any compensation for medical treatment or other financial claims. The debate over pleural plaques sparked a national debate about asbestos disease.

Although subsequent research did not provide enough evidence to overturn the Law Lords’ ruling, it has provided significant information about asbestos disease, including mesothelioma and lung cancer. The government also is establishing a number of policies to make it easier for those who are diagnosed with mesothelioma or serious asbestos disease to receive compensation more quickly. Additionally, the research has encouraged the UK government to take a stronger stand on mesothelioma research and treatment.

According to Straw’s statement, “The fact that the UK has one of the highest rates of death from mesothelioma in the world is a legacy of our industrial heritage and the part that asbestos played in it. Just as the UK was a global leader in the asbestos industry, we must now become a global leader in research into asbestos-related disease.”

The government of the UK is calling for the creation of a National Centre for Asbestos-Related Disease, which will be a “collaborative network of funded researchers whose core purpose would be to advance medical research into the prevention, cure and alleviation of asbestos-related disease – primarily mesothelioma,” according to Straw. He said the insurance industry has pledged £3 million toward this research effort.

Benefits of such a concentrated and cooperative research and treatment program would not only benefit mesothelioma patients, but also would significantly reduce the costs of litigation, death and disability benefits, and health care costs, Hahn points out.

“This is exactly what the Mesothelioma Applied Research Foundation has been urging in the United States the past ten years,” Hahn says. “Mesothelioma and other asbestos-related diseases are a fundamental problem of social justice. And a just solution to that problem requires medical research to develop effective treatments to end the suffering and save lives. It is encouraging to see that the U.K. is getting it; we hope the U.S. will catch up soon.”

Read Hahn’s statement.

For more information, visit the Meso Foundation online at www.curemeso.org.

SOURCE: myMeso › Meso Foundation commends U.K. efforts on mesothelioma, urges U.S. to follow suit

A special part of the Symposium activities is Advocacy Day, during which meso patients and their families travel to Capitol Hill to meet with their Senators and Representatives to ask for increased funding for mesothelioma research and treatment, and for the complete ban of asbestos in the United States.

I had the pleasure of attending this event last year and it is truly an amazing experience. There are touching tributes to those who have lost the fight against mesothelioma, and inspiring stories from those who are winning this battle. You can also gain so much knowledge from the many physicians and researchers who present programs. Many of them are open and available to talk with attendees throughout the conference as well.

You can find more information, including a video and archives of last year’s Symposium presentations, at www.curemeso.org/symposium. You can also view the agenda and register at the web site.  Or, call the Meso Foundation toll free at 877-363-6376.

SOURCE: myMeso › Registration now open for Meso Symposium

Projects funded by the 2009 Grant Awards include vaccine studies offering hope of targeted treatment without drastic side effects; a novel investigation of the role of hormones in mesothelioma treatment; developing pathway targets synergistic with current first-line therapy Alimta/Cisplatin; and a study specifically focusing on improved detection and treatment of peritoneal mesothelioma (affecting the lining of the abdomen). Visit the Meso Foundation online for details of each study.

Each year, the Mesothelioma Applied Research Foundation funds critically needed research to develop more effective treatments and ultimately, a cure. The Foundation has provided more than $6 million in grant funding, advancing mesothelioma science through promising studies around the world. The Meso Foundation’s funding objectives are to directly fund basic research and support clinical trials in worthy, peer-reviewed projects as well as to stimulate additional federal research funding opportunities.

The Mesothelioma Applied Research Foundation is a nonprofit collaboration of patients and families, physicians, advocates, and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma.

You can help! There are many ways to get involved with the Mesothelioma Applied Research Foundation. These include signing up to receive and respond to Action Alerts, which are specific campaigns for particular aspects of mesothelioma advocacy efforts; visiting your government officials to lobby for mesothelioma funding and awareness; volunteering in the meso community both locally and nationally; education; sharing your meso story; and donating to mesothelioma research.

For more information or to make a donation, visit the How You Can Help page at www.curemeso.org. The Meso Foundation is the recipient of the Charity Navigator “Four Star Charity” award and is recognized as the 2009 Great Nonprofits winner in the category of Cancer Fighters.

SOURCE: myMeso › Meso Foundation announces 2009 Grant Awards

MyMeso has a Facebook page, and I invite you to join us. You can visit our page here: http://tinyurl.com/ydl5xhd

Our good friend Debbie Brewer in the UK is online on Facebook. Just search for her name and you’ll come to her profile. She recently has started a Facebook fan page for Dr. Thomas Vogl, the groundbreaking researcher who is pioneering chemoembolization as a treatment for mesothelioma. Those familiar with Debbie’s story know that she has had great success with chemoembolization under Dr. Vogl’s care. You can visit his page here:  http://tinyurl.com/yeq5969

There also is a group set up to honor Debbie herself! You can find it by clicking this link: http://tinyurl.com/ychey9g

There is a special event planned for this Friday, Jan. 15, to celebrate Debbie, as well. “Raise a Glass to Debbie” asks everyone to raise a toast in honor of Debbie’s work as an activist for mesothelioma awareness and the fight for a cure. The event will occur between 8 p.m. and 11 p.m. and it doesn’t matter where in the world you are – the UK, the U.S., Australia, or any point on the globe – just join in!

There are so many wonderful support groups on Facebook. Two of these that my regular readers know I talk about a lot are the Asbestos Disease Awareness Organization (ADAO) (find them here: http://tinyurl.com/ybhmn9j) and the Mesothelioma Applied Research Foundation (http://tinyurl.com/ybv2uut).

SOURCE: myMeso › Facebook spreading mesothelioma awareness

Please share the following video with your family and friends, and fellow mesothelioma warriors, and help raise awareness about the many lives touched by mesothelioma.

You can visit the Meso Foundation online to make a donation to help this organization fund mesothelioma reserach and continue providing patient services, or mail your contribution to:

Mesothelioma Applied Research Foundation
P.O. Box 91840
Santa Barbara, CA 93190-1840

You may specify a loved one in whose memory the contribution is made, which will be acknowledged on the Tribute Wall, displayed at the annual International Symposium on Malignant Mesothelioma in June 2010. Contributions over $100 also will be acknowledged in the Meso Foundation Annual Report. There is much more information online about how you can help. Please visit them today!

SOURCE: myMeso › Make a resolution to help cure mesothelioma

This issue is available to download online. If you are having trouble downloading the newsletter, or just want an original hard copy, please let me know. I have some extra copies of the newsletter graciously provided to me by the Meso Foundation that I would be happy to send to you. You can also subscribe by visiting the Meso Foundation online at www.curemeso.org. There also is an archive of past newsletters on the site.

Another exciting resource available at the Meso Foundation web site is a video library of presentations from the Symposium. There were so many great speakers, and this is a truly valuable resource for excellent educational information. The video library also provides access to the slides used by conference speakers. There really is a fantastic amount of information here on topics ranging from Advocacy & Advancing the Mission, to Integrative Medicine, Nutrition, Cancer and the Immune System, Peritoneal Mesothelioma, Pleural Mesothelioma, Clinical Trials and much more.

While on the Meso Foundation web site, please join their online Mesothelioma Community, which will allow you to exchange information with others through a Bulletin Board, as well as read a number of blogs touching on a wide variety of topics. You can also subscribe to an e-newsletter that will keep you informed about all the great work the Meso Foundation is accomplishing in its mission to find a cure for mesothelioma.

If you have any questions or need assistance, you may call the Meso Foundation at (805) 456-7272 or call them toll-free at 877-END-MESO.

SOURCE: myMeso › Awareness, educational materials available from Meso Foundation

The Meso Foundation is urging the mesothelioma community to contact their House Representative to urge him or her to co-sponsor the bill. Representative McCollum still needs 13 more co-sponsors to complete the passage of National Mesothelioma Awareness Day in both the House and the Senate.

The news release quotes Chris Hahn, Executive Director of the Mesothelioma Applied Research Foundation, “Thanks to the concern of Sen. Murray and Congresswoman McCollum, and their introduction of the federal ‘National Mesothelioma Awareness Day’ resolution, we hope that mesothelioma will finally become part of a broad national conversation about its tragic impact in our society and the critical need to fund reserch to develop treatments and, ultimately, find a cure for mesothelioma.”

Your help is urgently needed to encourage House Representatives to co-sponsor this resolution. Visit the Meso Foundation’s “Action Center” at www.curemeso.org/action to send an email to your congressional representative.

SOURCE: myMeso › Meso Day resolution passes in Senate, pending in House

I think it was Cheryl who introduced herself first, and I was delighted to hear she was from my home state, Alabama, about two and a half hours north of Montgomery, in Anniston. When I told her I was from Montgomery, she was ecstatic to finally find someone with a meso connection in her home state.

Cheryl lost her husband, Virgil, to mesothelioma on May 31, 2005, just two days after their 40th wedding anniversary. She began attending the Meso Foundation conference almost immediately, urgently needing to connect with others who might understand what she was going through, and to make sense of a disease that took her best friend and love of her life before either of them fully realized what was happening.

Virgil first began to notice something was wrong in late March 2004, when he had a severe pain in his side. His hobby was restoring vintage automobiles, and he had been working on a friend’s car, so he thought he had possibly just bruised a muscle while working. But shortly after that he developed a terrible cough.

“It was a whole-body cough,” Cheryl recalls. “Like from head to toe.”

Virgil went to see his doctor, who thought the cough might be related to a drug he was taking following a heart catheterization, which he’d had earlier that year.

“The doctor said it would take 60 days or so to get the drug out of his system, so basically for two months we did nothing,” Cheryl says. “The pain in his side persisted, and the cough got worse. Right up until this time, after his heart problems, he had been dedicated to cardiovascular exercise and eating right. He was probably in the best shape he’d been in for years. He would actually get onto to me about exercising more and eating right,” she recalls with a laugh before turning sober again. “So this was just odd. He kept feeling sicker and sicker.”

He went back to the doctor, thinking maybe there was something wrong with his heart. Tests showed his heart was fine, and doctors sent him home and told him to just continue to exercise and eat right.

But Virgil began having trouble breathing. It was September by now. He visited the doctor again, and was referred to a pulmonary specialist for a thoracentesis. They found fluid in his lungs, but tests came back negative for cancer or any type of infection. But the fluid came back almost immediately.

Cheryl was getting really worried.

“He was used to being active, but now he could hardly get around. He had no energy,” she remembers. “We had requested referrals to see some doctors in Birmingham, because he was dying in front of me. I knew there was something more going on, and I couldn’t understand why nobody could tell us. We had two more thoracenteses and still no diagnosis. The local doctors said they didn’t know what was wrong with him.”

At this point, Cheryl decided to call Birmingham, and talked to a nurse at UAB Medical Center. She got a referral for a pulmonary specialist, and made an appointment for Virgil the following week. But when they got to see the doctor, he said Virgil actually should see a thoracic surgeon, and gave them another referral. They gathered all Virgil’s test results and visited the thoracic surgeon on December 14. An initial theory was that Virgil might have a collapsed lung and scar tissue.

“Virgil had really gone downhill,” Cheryl said. “He was aging. Things had fallen apart in nine months, since the first symptoms.”

Doctors decided to do a thoractomy, but because it was Christmastime, they decided to wait until January, telling Virgil and Cheryl to go home and enjoy the holidays with their family. He finally had the surgery Jan. 4, and they first heard the word mesothelioma. But the diagnosis still wasn’t definite until about 10 days later.

“At that point it was stage 2+ or 3-. It was already advanced. We were referred to a doctor for chemotherapy, but still nobody was really telling us much about what this diagnosis meant. We had no idea.”

Virgil underwent a series of chemotherapy treatments, and then on April 20 began receiving radiation at a cancer center in Birmingham.

“By then, his breathing had deteriorated and they’d put him on oxygen,” Cheryl said. “He’d really not been able to lie flat since September. He had to prop up in a recliner or on a pallet on the floor.”

On May 19, a Thursday morning, Virgil woke Cheryl and told her something was wrong and that he felt he needed to go to the hospital. They went to UAB. On May 21, the doctor came in and told them Virgil was not improving, and that he didn’t have long to live. She estimated two and half to three months, and advised them to get their affairs in order.

“This was the first time anyone really talked to us about dying. Everyone was telling us he had time, that there was all this time.”

They called in Hospice care, and their daughter, Pam, came to visit, bringing their grandson and making a video of Virgil and the boy. On May 30, Virgil began doing worse, and passed away the next day. This was just nine days after they’d first been told that Virgil’s condition was terminal, and about 15 months since his first symptoms.

Cheryl was in shock. “He was 60 years old and had been in prime health,” she says. “When he died, he looked like he was 90. I didn’t even realize how bad he looked because I guess I saw him every day. Months later, I watched the video Pam had made just before he died, and then I really saw it.”

Virgil’s illness had been such a whirlwind; Cheryl wasn’t quite sure what to do after his death. She still couldn’t quite believe it had even happened. She was angry, that Virgil went so long with no diagnosis and no treatment. She felt guilty, like she ought to have somehow known more, or done more. And she felt alone.

Some time after Virgil was diagnosed with mesothelioma, Cheryl found the Mesothelioma Applied Research Foundation, a non-profit organization dedicated to the elimination of mesothelioma through outreach, education and funding research efforts to find a cure. She also connected with Sue Vento, the widow of Sen. Bruce Vento of Minnesota, after whom the pending “Bruce Vento Ban Asbestos and Prevent Mesothelioma” legislation before the U.S. Congress was named.

“She emailed me and I think called me, too,” Cheryl says. “She sent me a book on meso as well. She was the calm in the middle of my storm, and has kept in touch with me during this time via emails.”

Following Virgil’s death, Cheryl decided to attend the Meso Foundation’s annual International Symposium on Malignant Mesothelioma, and packed her bags for the trip to Washington, D.C. Many of her friends couldn’t understand it, but she says it was something she had to do.

“I somehow found MARF and the main reason I went to the conference that first year was to have someone to share this pain, and try to come to some conclusions,” she said. “You feel like you didn’t do something you should have. We had never heard of the word until they told us the diagnosis.

“I really felt like … when you lose your husband, who had been my friend, before he was my sweetheart – we’d known each other since we were 12. I felt if there was some way I could reach out to someone else it would help me as much as maybe I could help them. I felt there was that need in my heart, to find out as much as I could about the disease,” Cheryl says. “It was wonderful to know that people were surviving. But it makes me angry that Virgil didn’t have a chance.”

She had a chance to meet her “rock,” Sue Vento, at that first conference as well. Since that time, Cheryl has attended the Symposium for three years in a row, where she is active, joining others in visiting Capitol Hill to ask Congress to ban asbestos, and to fund mesothelioma research. She is also active in her community, talking to people about the dangers of asbestos exposure and about mesothelioma. She takes brochures about mesothelioma to doctors’ offices, hoping to increase knowledge among the medical community, hoping that someone else may be diagnosed early enough for treatment.

“Now I have contact with more people who are battling mesothelioma, and I learn that most people also have never heard of it. At the time, you just have to hang in there, and you can fall apart later. So I try to connect and just try to help someone, to let them know that someone is there who understands what they are going through. And it helps me too,” she says.

“I share my story every chance I get. I wear an awareness pin. People need to know asbestos is out there and it’s killing people.”

Outreach is hard. Every time she shares Virgil’s story, the pain is fresh again. But Cheryl is determined, and she’s willing.

“Mesothelioma patients and their families are victims,” Cheryl says. “They are victims of asbestos. And all of this COULD and SHOULD have been avoided!”

SOURCE: myMeso › Victims of asbestos — Virgil and Cheryl’s story

We need your support today for the Federal Government to issue a National Mesothelioma Awareness Day Proclamation! Representative Betty McCollum in the House of Representatives is about to introduce a National Proclamation of Mesothelioma Awareness Day. She needs as many co-sponsors in the House of Representatives as possible by 12 noon tomorrow (September 24th, Eastern Time).

To ask your Representative to support Representative McCollum in raising awareness for mesothelioma in our country, please visit our Action Center (www.curemeso.org/action) and send an email now! Together we can raise public awareness of this tragic disease and of the need to develop treatments and a cure!

SOURCE: myMeso › Meso Foundation issues urgent call for support

Mesothelioma is a deadly cancer that most often affects the lining of the chest and lungs, but which also may affect the lining of the abdomen or, more rarely, the heart. It is caused only by exposure to asbestos. The latency period for mesothelioma is generally long, spanning 10 to 50 years from the time of exposure to any symptoms developing, making it hard for mesothelioma sufferers to pinpoint when they were exposed. There is currently no know cure for mesothelioma.

In the past, mesothelioma was seen primarily in older men, who had worked in factories, as insulators, or in shipyards, where asbestos was commonly used. However, today, the disease is being diagnosed more frequently in younger people and more often in women. Most of these cases are the result of secondary exposure, such as family members exposed to asbestos dust on the clothes of someone who worked with the substance. It could also be the result of environmental exposure. Mesothelioma has become everybody’s problem.

Asbestos is still not completely banned in the United States.

SOURCE: myMeso › Mayor Todd Strange declares Mesothelioma Awareness Day in Montgomery

Registration fee for the event is only $15 (prior to Sept. 16; $20 after Sept. 16, $25 day of the event), with all proceeds going to the Mesothelioma Applied Research Foundation, which is the national non-profit dedicated to ending the suffering caused by mesothelioma by funding mesothelioma reserach, educating patients and advocating for federal mesothelioma funding.  The event is sponsored by Simmons Law Firm, which has pledged to match every entry with an additional $15 donation to the Meso Foundation.

The race is open to everyone of all ages, from serious runners to walkers and families. The event will be coordinated by the Metro Tri Club. There will be cash prizes, and every participant registered before Sept. 16 will receive a commemorative hi-tech running t-shirt.

You can REGISTER ONLINE or download a registration form at the web site and mail it along with your registration fee to:

Miles for Meso
c/o Metro Tri Club
P.O. Box 42
Roxana, IL 62084

Checks should be made payable to the Mesothelioma Applied Research Foundation.

The 5K race will be a timed, competitive event, and the 5K fun run/walk will be a great chance for runners, walkers, families and others to show their support for a great cause.

For more information visit the official web site at www.milesformesothelioma .org.

SOURCE: myMeso › Miles for Meso fundraiser race set for Sept. 26

Here at myMeso, we have had great support for both Mesothelioma Awareness Day and Asbestos Awareness Day (April 1) from the City of Montgomery in the past. This year, we are hoping to expand our efforts, and share this important message with even more folks throughout our community and across the state. I’ll keep you posted as our plans develop. If you’d like any help in your area, please let me know, and I’ll be glad to lend a hand, or certainly contact the good folks at the Meso Foundation.

In addition to Meso Awareness Day, there are a few other upcoming mesothelioma and asbestos awareness events – go ahead and mark your calendar!

• The Asbestos Disease Awareness Organization (ADAO) has announced its Sixth Annual International Asbestos Awareness Day (AAD) Conference will be held in Chicago, Ill., April 9-11, 2010. Registration starts January 1, 2010. The theme is “Science and Technology Proves Asbestos is a Carcinogen.” This great conference features tons of expert speakers, as well as a heartfelt Remembrance Brunch to honor those who lost their lives to asbestos disease. Visit the ADAO web site for more information, and make plans now to attend.
• The Mesothelioma Applied Research Foundation (Meso Foundation) announced the 2010 International Symposium on Malignant Mesothelioma will again be held in Washington, D.C., and the event will return to the Omni Shoreham Hotel, which was a wonderful host for the event this year. Dates are June 10-12, 2010.

I will provide more information about both of these events as details are announced, but it’s never too late to make your plans. These events provide a wonderful opportunity to learn more about the dangers of asbestos, and the progress being made in research and treatment of asbestos-related diseases like mesothelioma. They also are a wonderful way to network and make connections with other people who are fighting the battle to prevent and cure mesothelioma.

SOURCE: myMeso › Mark your calendar for mesothelioma, asbestos awareness events

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.

SOURCE: myMeso › Meso Foundation named to list of top-rated cancer fighting nonprofits

Peritoneal mesothelioma affects the lining of the abdomen, and makes up about 10-15 percent of all mesothelioma diagnoses. The more common form of mesothelioma is pleural, which affects the lining of the chest and lungs. All mesothelioma is linked to asbestos exposure.

The current “best practice” for the treatment of mesothelioma is a multi-modality approach, which is a combination of surgery and chemotherapy, along with immunotherapy.

“It’s a sequence of treatments that make sense,” Dr. Chabot explained.

However, Dr. Sugarbaker pointed out, only a small fraction of mesothelioma patients receive multimodality treatment.

“So many more things could be done to manage the treatment of this rare disorder,” Dr. Sugarbaker said. “We should have accumulated many thousands of data points on people with peritoneal mesothelioma. Unfortunately, a majority of patients in the U.S. do not get to a treatment center.”

There are still only a handful of treatment centers that specialize in mesothelioma, and even then there are distinctions in the treatment of peritoneal or pleural mesothelioma that narrows the field even further. Also, there are not a large number of physicians currently treating mesothelioma, and no established surgical training programs specifically for this field to develop more doctors experienced in mesothelioma treatment.

Awareness also is still an issue. Many patients are diagnosed too late for effective treatment.

Even if awareness is high and a patient is diagnosed early enough to be a viable candidate for successful mesothelioma treatment, the logistics of receiving treatment can be difficult. Most of the centers for mesothelioma treatment are located on the East Coast. There is one on the West Coast, but almost no options in the Midwest or other areas of the country. Treatment is usually extended over many months, making it necessary for patients to relocate to be near a treatment center if they are not lucky enough to live nearby.

“People often move and rent temporary housing. People live in trailers,” Dr. Chabot said. “More advocacy is needed to provide patient and family support for treatment. The travel issues for people who need treatment are huge.”

The Mesothelioma Applied Research Foundation, which sponsors the annual Meso Symposium, is laying the groundwork to facilitate discussions and establish a collaborative strategy, simply by bringing together the experts in this field. There is an emphasis now on forming a consortium to establish a new standard of care, and to try to combine the knowledge of the existing research and treatment centers, and to expand access to that research and treatment.

But, the experts acknowledge, there is still much to do.

SOURCE: myMeso › Access to mesothelioma treatment limited, difficult

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 community rallies to raise awareness, find a cure

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 › Tribute of Hope at Meso Symposium

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 › Asking for support of mesothelioma funding, asbestos ban

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

SOURCE: myMeso › MyMeso goes to Washington

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 › May I remember your loved one at the Meso Symposium Tribute Ceremony?

Today I heard from two people who are looking for ways to help raise awareness of mesothelioma and funds for research. One lives in California and the other in New York. If you know of any events in these areas in the coming weeks, please email us at myMeso – you can just click that green “Contact Us!” button on the home page, or you can email me directly at wendi.lewis@beasleyallen.com.

Also, if you send us information about an event, please include information about where the proceeds will go (either to an individual or an organization) and let us know how people can donate even if they cannot attend the event. Many people in the meso community will still want to help, even if they aren’t able to travel to your area to participate.

I look forward to helping you get the word out about your mesothelioma awareness event!

SOURCE: myMeso › Please let us know about your mesothelioma events!

The 5k Walk for Hope was established in 2006 by Janice Malkotsis, who lost her father, Joseph Lombardo, to mesothelioma in 2005. Mr. Lombardo was diagnosed with peritoneal mesothelioma in 2004 and his family suffered with him as they watched him lose his fight to this deadly cancer, caused by exposure to asbestos.

Janice says she promised her father in his final weeks that she would work to educate people about mesothelioma, which is still largely unknown and unreported in the United States. Through MARF, Janice partnered with Erica Iacono, who also lost her father to mesothelioma, and the two created the 5k Walk for Hope. Together, they’ve raised nearly $50,000 for mesothelioma research through this event. They also are sponsored by Joe Fox of Belluck & Fox, LLP, who represented Mr. Lombardo before his death.

The 5k Walk for Hope will be held at Eisenhower Park in East Meadow, NY, with sign-in at 9 a.m. and the the walk beginning at 10 a.m. Registration is $15. Download the online registration form.

If you are unable to attend the walk, but would like to support this effort, you can send a donation that will go to MARF. The Mesothelioma Applied Research Foundation is the nonprofit collaboration of patients and families, physicians, advocates and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma.

You can send your donation to the following address:

5k Walk for Hope
c/o Janice Malkotsis
130 Taft Avenue
Merrick, NY 11566
(checks should be payable to 5k Walk for Hope)

SOURCE: myMeso › Walk for Hope this weekend!

Discussing the atmosphere of celebrity in which Miley grew up, as the daughter of a performer, the interview veers off to mention Billy Ray’s roots as the son of a steelworker father, Ron Cyrus, who went on to serve 21 years in the Kentucky House of Representatives. Almost offhandedly, the story mentions that Ron Cyrus passed away of mesothelioma, which he almost certainly contracted through his exposure to asbestos in the mills.

Perhaps the paper felt this tidbit was relevant to its Boston audience because the elder Mr. Cyrus visited Boston for treatment of his mesothelioma, and son Billy Ray wrote a colorful country tune, “I Want My Mullet Back,” in honor of a former Red Sox baseball player. In his day, Billy Ray was famous for his own long mullet haircut, a style cropped short on top and sides but long in the back (“business in the front, party in the back”).

The mention of mesothelioma seems random, but there’s more to the story.

Ron Cyrus passed away on February 28, 2006. He had served in the Kentucky House of Representatives for Kentucky’s 98th Legislative District, beginning in 1975, and was elected to 11 consecutive terms before retiring in 1996. He was 70 years old when he passed away, and old reports from that time list his cause of death simply as “lung cancer.”

In March 2006, at the end of its regular session, both houses of the Kentucky State Legislature observed a moment of silence in honor of Ron Cyrus’s passing.

But now, in its 2009 session, the Kentucky legislature is once again recognizing the issue of mesothelioma and asbestos awareness, and, along with it, Ron Cyrus.

First, on Feb. 6, Representative Ancel Smith and Rep. Sannie Overly introduced HR95, a resolution to recognize September 26 as National Mesothelioma Awareness Day, as designated by the Mesothelioma Applied Research Foundation (MARF) and supported by U.S. Congressional resolution.

HR95 was established in Kentucky to honor “those who have fallen victim to this disease in the Commonwealth” and names “former legislator Ron Cyrus; Todd Hall, a bright, young University of Kentucky graduate who had started a successful business; [and] Allen Conley, a naval architect and marine engineer exposed to asbestos in the Yorktown, Virginia Naval shipbuilding yards…”

The resolution was adopted in the House by voice vote on Feb. 9.

Then, on Feb. 23, HB519 was introduced in the Kentucky House of Representatives, sponsored by Representatives Ancel Smith, Keith Hall,  Tom Burch, Leslie Combs, Ted Edmonds, Jeff Greer and Brent Housman. The Act would designate Sept. 26 of each year as Mesothelioma Awareness Day in the Commonwealth of Kentucky and would be known as “The Ron Cyrus and Todd Hall Mesothelioma Awareness Act of 2009.”

The bill passed the house by a vote of 97-0 on March 10, with 3 not voting.

The bill was introduced in the Senate designated as SB58, sponsored by Johnny Ray Turner, where it passed unanimously by a vote of 36-0 on March 3.

Read SB58.

Read HB519.

Read House Resolution 95.

SOURCE: myMeso › Billy Ray, Miley Cyrus draw attention to mesothelioma

The event was organized by Tara Music, in honor of her father, Raymond Beltrami, who was diagnosed with mesothelioma in January 2008 and passed away just six short months later. She says, ‘Because I could not do anything to save him, I have felt the need to spread awareness about this horrific disease.”

For a $15 registration fee, participants received three games of bowling, lunch and a commemorative t-shirt. The event raised almost $1,000, and donations are still coming in!

You can help – mail your contribution to Tara’s attention at 11 Woodgate Court, Ormond Beach, FL, 32174. Proceeds will benefit the Mesothelioma Applied Research Foundation (MARF), which is dedicated to finding a cure for mesothelioma.

Pictured at top: Tara’s nephew, Dylan Hogan, holds a photo of Raymond Beltrami.

Pictured below, from left: Tara’s sister, Rene Hogan, mom Noreen Beltrami, Tara, and Raymond’s mother, Gladys Beltrami.

SOURCE: myMeso › Bowlathon honors Raymond Beltrami while raising awarness, funds for research

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.

SOURCE: myMeso › Race set to raise awareness, funds for meso cure

The family, including Bill Sr.’s wife (and Bill Jr.’s mom) Debbie, has dedicated the 2009 racing season to “Racing for a Cure,” with a goal of raising awareness of mesothelioma and funds for mesothelioma research. In addition to the event this weekend, which will be held at Granite Run Mall in Media, Penn., March 7 and 8, there are other sponsorship opportunities available, including placing your company name and logo on a car, driver’s racing suit, tickets and pit passes, and other race-related items and events.

Proceeds from all fund raisers will go to the Mesothelioma Applied Research Foundation (MARF), a national non-profit organization dedicated to eradicating mesothelioma as a life-ending disease by funding research, helping patients find resources and treatment, and advocating for federal mesothelioma reserach funding.

Bill Thomas Racing has a new web site dedicated to the meso awareness project, at www.billthomasracing.com/racingforacure. According to the site, benefits of sponsorship, in addition to media visibility and promotion, include “an opportunity to join an initiative that will really make a difference in people’s lives.”

The Racing for a Cure event this weekend will feature a “meet and greet” with drivers, race cars will be on display, and there will be a silent auction. Ms. Motorsports 2009 also will be on hand to greet fans and sign autographs.

For more information about how you can sponsor the 2009 Racing for a Cure season, visit the web site, or contact Bill Thomas at 610-876-3781 or by email at wthomas210@comcast.net.

SOURCE: myMeso › Racing for a Cure event is this weekend!

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.

SOURCE: myMeso › Racing to cure mesothelioma

But in the meantime, let me share some news about a fund raising event for mesothelioma research for those of you who live in northeast. The Bridgeport Speedway and Bill Thomas Racing will present the first ever “Meet & Greet the Drivers and See the Cars of Bridgeport Speedway” on Saturday and Sunday, March 7 and 8. The event will be held at the Granite Run Mall in Media, Penn.

Proceeds from the event will benefit the Mesothelioma Applied Research Foundation to help fund research to find a cure for mesothelioma. The show will see the mall filled with racing vehicles of all classes and there will be a number of current and retired racers on hand to visit with fans and sign autographs. The event also will feature Ms. Motorsports 2009.

The Bridgeport Speedway, which is located in Bridgeport, New Jersey, bills itself as “The Fastest Dirt Track in the East.” The South Jersey raceway features a fun family atmosphere at a banked 5/8th mile dirt oval, featuring a dirt 1/4 mile oval embedded in the center. The track is centrally located minutes from Pennsylvania and Delaware.

The Granite Run Mall is located in the heart of the tourist areas of central Philadelphia, Valley Forge and the Brandywine Valley.

More information about fund raising events to benefit mesothelioma research through the Mesothelioma Applied Research Foundation is available on the organization’s web site, along with assistance if you’d like to plan an event. Go to their home page at www.curemeso.org and click on the “Volunteer” tab and then “Upcoming Events,” or email info@curemeso.org.

SOURCE: myMeso › Bridgeport Speedway benefit for meso research

The Symposium 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.

Activities usually include educational forums on a number of medical topics related to mesothelioma, as well as 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.

While specifics on this year’s event have not been announced, last year’s event also included opportunities for attendees to lobby their congressional delegation on behalf of asbestos and mesothelioma awareness and funding. There also was a gala dinner to honor those living with meso, and recognize outstanding volunteers and advocates for their hard work.

As in past years, scholarships for Symposium registration fees, as well as for transportation and accommodations, are available for patients, family members and caregivers who would like to attend.

For more information, visit www.CureMeso.org.

SOURCE: myMeso › Save the date for Meso Symposium 2009

Yang was one of five recipients of the MARF grant, and was selected from among 59 applicants in an international competition. Her research project will include an early detection study of mesothelioma in targeted villages in Turkey that show a high incidence of the disease, the paper reports.

In addition to the MARF grant, Yang will recieve $120,000 from the Hawaii Community Foundation Leahi Fund that will help support her research.

According to the Honolulu Advertiser, people in Hawaii are familiar with mesothelioma because it often affects people who worked in the naval shipyards at Pearl Harbor, as a result of exposure to asbestos used in shipbuilding for years.

The Cancer Research Center of Hawaii is a reserach unit of the University of Hawaii. It was established as a freestanding independent institute in 1981. On July 1, 1996, the Center became a National Cancer Institute (NCI) designated center, and was awarded the Cancer Center Support Grant. The Center is located in Honolulu, Hawaii. Its mission is to “reduce the burden of cancer through research, education, and service with an emphasis on the unique ethnic, cultural and environmental characteristics of Hawaii and the Pacific.”

SOURCE: myMeso › Yang receives MARF grant for meso study

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.”

SOURCE: myMeso › Girl honors grandpa at Mesothelioma symposium

According to the company’s news release, available in its entirety on the Mesothelioma Applied Research Foundation web site, the trial is moving forward after a favorable review of currently available safety and efficacy data from the Phase II portion of the study. This is an international study, expected to enroll 660 patients with testing centers in the United States, Belgium, Germany, the Netherlands, New Zealand, Spain, Sweden and the United Kingdom. It will be an ongoing randomized, double-blind, placebo-controlled trial.

Information provided by Merck says the trial will examine the safety, tolerability and anti-tumor activity of oral vorinostat with best supportive care as compared to best supportive care plus placebo in patients with advanced mesothelioma who have failed or are intolerant to prior chemotherapy, icnlucing pemetrexed in combination with either cisplatin or carboplatin.

Primary endpoints of the Phase III trial include overall survival as well as characterization of the overall safety and toxicity of vorinostat in patients with advanced malignant mesothelioma.

Patients interested in more information about the trial and how to enroll should call toll-free 1-866-890-6619 (in the U.S.) and 1-888-577-8839 (outside the U.S.) or visit the Merck Cancer Trials web site.

Zolinza is currently approved in the U.S. for treatment of cutaneous manifestations in patients with cutaneous T-cell lymphoma (CTCL) who have progressive, persistent or recrruent disease on or following two systemic therapies.

SOURCE: myMeso › Merck begins vorinostat Phase III meso trial

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.”

SOURCE: myMeso › MARF announces Mesothelioma Symposium

In October 2007, the Senate companion bill, sponsored by Sen. Patty Murray (D-WA), passed. The House bill toughened the legislation, under the direction of the Environment and Hazardous Material Subcommittee of the House’s Energy and Commerce Committee, eliminating an exception for asbestos present at 1 percent or less by weight, making the ban a matter of federal statute rather than EPA regulation, and adding enforcement provisions.

The Meso Foundation reports the critically needed medical research funding provisions from Sen. Murray’s and Congresswoman McCollum’s legislation have not yet been added to the Committee Print.

In a statement released yesterday in support of including the research funding, the Meso Foundation said, “for the sake of all those already exposed, those now sick, and those who will be exposed in the future to asbestos already in place, we call on the Health Subcommittee to follow Sen. Murray and Congresswoman McCollum in recognizing the necessity of a robust asbestos disease research program, and to adopt the research funding provisions included in their legislation.”

Read the full story about this important legislation at Yahoo! News.

Supporters are urged to contact their Representative in Washington, DC, to urge inclusion of the research funding and swift passage of the complete bill once the funding is in place.

In Alabama, House Representatives are Robert Aderholt (4th Congressional District), Jo Bonner (1st), Mike Rogers (3rd), Spencer Bachus (6th), Robert E. “Bud” Cramer (5th) and Terry Everett (2nd). If you are not sure which is your congressional district, to locate contact information for your representative or to locate the representative for your state, visit the United States House of Representatives online, and click on your state for a list of your representatives.

Please contact your Representative NOW to let them know you support this legislation and to ask for their support. Please email me if you’d like any help!

SOURCE: myMeso › Action alert for Ban Asbestos and Prevent Mesothelioma Act

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.

SOURCE: myMeso › National Mesothelioma Virtual Bank operational

In the 2008 defense appropriations bill, Congress designated $50 million for the mesothelioma research as part of the Pentagon’s peer-reviewed program.

TheHill.com points out that supporters of the initiative for continued funding in the 2009 bill argue that “at least one third of the people suffering from mesothelioma … have either been in the Navy or worked in Navy shipyards across the country” where they were exposed to asbestos. Much of the exposure in the Navy cases, the report states, happened between World War II and the Vietnam War, when asbestos was used in shipyards and ships. For that reason, supporters push for federal funding for research.

TheHill.com writer Roxana Tiron reports that last month several senators sent a letter to the chairman and ranking member of the Senate Appropriations Defense panel in support of the continued funding. The letter stated, in part, “Funding through the Department of Defense appropriations bill is an important demonstration of our nation’s commitment to addressing the tragedy of mesothelioma and its disproportionate impact on those who serve our country.”

Among the bill’s supporters are Sens. Max Baucus (D-Mont.) and Patty Murray (D-Wash.), who have been leading the charge to ban asbestos and secure more funding for mesothelioma research. The Ban Asbestos bill, introduced by Murray and passed in the Senate last October, includes $10 million per year in funding for cancer research. The companion bill in the House has not yet been passed.

Also among the supporters for the 2009 appropriations funding for meso are Sens. Patrick Leahy (D-Vt.), Dick Durbin (D-Ill.), Barbara Boxer (D-Calif.) and John Ensign (R-Nev.).

The Meso Foundation funds approximately $1 million a year for research worldwide. The organization will hold its annual three-day symposium in Washington, D.C., starting on June 26, expecting more than 100 grassroots supporters to meet with their congressional representatives. For more information about this event, visit MARF online.

SOURCE: myMeso › DoD appropriations bill has meso funding request

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.

SOURCE: myMeso › Meso Foundation NY chapter Walk for Hope

SOURCE: myMeso › DoD funding for Meso research