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!

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!

I reported last week that Debbie Brewer, our friend in the UK, had another amazing report from Germany, where she has been undergoing chemoembolization to treat her mesothelioma. Her tumor has now shrunk a total of 83 percent! Debbie is sharing her experience with media in Britain, hoping to gain more widespread acceptance of chemoembolization as a treatment for meso, and to raise awareness that the therapy, currently in clinical trials, exists.

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.

This is a reminder to our readers that the Mesothelioma Bowlathon fund raiser is set for tomorrow, March 21, at Ormond Lanes in Ormond Beach, Fla. This event is being organized by Tara Music, in honor of her father, Ray Beltrami, who passed away as a result of mesothelioma on July 1, 2008.

If you live in the Ormond Beach area, it’s not too late to participate! The event is set for 1-3 p.m., with registration beginning at the bowling alley at noon. The $15 registration fee includes three games, lunch and a t-shirt. Proceeds will benefit the Mesothelioma Applied Research Foundation, which is the national organization dedicated to eradicating mesothelioma as a life-ending disease.

If you are not able to participate in the event, you can still make a donation. Mail your contribution to Tara’s attention at 11 Woodgate Court, Ormond Beach, FL, 32174. For more informatin, you can email Tara at tmusic1@cfl.rr.com or call 386-405-8264.

Live in Florida near Daytona? Sign up to participate in the Mesothelioma Bowlathon, set for Saturday, March 21, at Ormond Lanes in Ormond Beach, Fla. The event will be held from 1-3 p.m., with registration beginning at noon. A $15 registration fee includes three games, lunch and a T-shirt. Proceeds will benefit the Mesothelioma Applied Research Foundation.

The event is being organized by Tara Music, in honor of her father, Ray Beltrami. He was diagnosed with meso in January 2008, and passed away July 1, 2008.

“Because I could not do anything to save him, I have felt the need to spread awareness about this horrific disease,” Tara says.

For more information, contact Tara at tmusic1@cfl.rr.com or call 386-405-8264. If you are on Facebook, you can visit the MyMeso page to find a link to this event. A map to this event is available.

If you are not able to attend, but would like to make a donation, you can mail your contribution to Tara’s attention at 11 Woodgate Court, Ormond Beach, FL, 32174.

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

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

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

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

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

For more information or registration, visit ADAO online.

Alfacell Corporation, which has completed a confirmatory Phase IIIb clinical trial for its unresectable malignant mesothelioma treatment ONCONASE, reported a net loss of about $2.8 million for the first quarter of fiscal 2009. Reported by MarketWatch, the financial results are for the fiscal quarter ending Oct. 31.

The company reports a drop in cash and cash equivalents to $2 million, down from $4.7 million in July 2008. However, the company received $1.1 million from the sale of state tax loss carryforwards in New Jersey in December 2008, and says its cash reserves “are sufficient to support its activites into the fourth quarter of fiscal year 2009,” according to the report.

Following the Phase IIIb clinical trial, it was determined ONCONASE results in a statistically significant improvement in survival for patients with unresectable malignant mesothelioma who have failed one prior chemotherapy regimen. This represents a currently unmet medical need, and Alfacell will meet with the Food and Drug Administration in January 2009 to discuss details of its planned New Drug Application submission.

According to information provided by Alfacell, “ONCONASE is a first-in-class therapeutic product candidate based on Alfacell’s proprietary ribonuclease (RNase) technology. A natural protein isolated from the leopard frog, ONCONASE has been shown in the laboratory and clinic to target cancer cells while sparing normal cells. ONCONASE triggers apoptosis, the natural death of cells, via multiple molecular mechanisms of action.”

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

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

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

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

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

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

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

A Minnesota woman is “claiming cured” after battling mesothelioma. Diagnosed in November 2005, Heather Von St. James, now 39, underwent surgery under the care of Dr. David Sugarbaker, who heads the acclaimed International Mesothelioma Program at Brigham & Women’s Hospital in Boston. Now nearly two years later, all traces of her cancer are gone, according to a story today in the Minneapolis Star-Tribune.

Heather’s treatment included radical surgery to remove her left lung, the lining around her heart, half her diaphragm, her sixth rib, and a few lymph nodes, followed by a chemotherapy regimen every three weeks for 12 weeks.  She now calls herself the “poster child for hope after meso.”

According to the Star-Tribune article, Dr. Sugarbaker is more guarded, although optimistic. The paper quotes him as saying, “right now in this present moment she is disease-free.”

Dr. Sugarbaker is arguably the leading mesothelioma physician in the U.S., and is largely credited with developing the surgical technique for mesothelioma resection and for recognizing the importance of a multimodality approach to treatment that combines surgery with chemotherapy and radiation therapy.

The National Cancer Institute estimates about 2,000 cases of mesothelioma are diagnosed in the U.S. each year. The disease has a long latency period of between 20 and 50 years, and it is unusual to find it in someone so young. Mesothelioma is linked only to asbestos exposure, so its victims are traditionally people who work in asbestos mining or come into contact with asbestos through other occupational exposure.

In Heather’s case, her mesothelioma is most likely due to secondhand exposure, from asbestos on her father’s work clothes. The Star-Tribune reports that Heather’s dad, Rollie Rosedahl, was a construction laborer who often worked with asbestos-containing products. Heather says she often wore her father’s jacket and boots when he’d come in from work.

The National Cancer Institute says that asbestos related disease like mesothelioma and asbestosis can occur in people with only brief exposures, and that there is evidence that family members of workers exposed to asbestos face an increased risk of developing mesothelioma.

Last week, I mentioned that I’d come across an interesting story about a jazz musician and noted writer in Britain, who released a recording of his work begun in 1973. Keith Shadwick was a professional musician in Australia at the time, and he, along with drummer Gary Norwell, had formed a band called Sun, with a few other musicians. The group released one album, but then broke up. Keith and Gary recorded several jazz tracks before going their separate ways, and Keith revived the project off and on, in the mid 1980s and again in 2005 when he was diagnosed with mesothelioma.

A British record label, Candid Records, agreed to release the CD, and Keith recruited a number of musicians to fill in the gaps on the tracks to finally see the project through. The CD was called Free Time, a name initally selected because the original tracks recorded in 1973-74 were done during a recording studio’s down time, when a friend who worked there was able to lend Keith and Gary the space. But the liner notes, penned by Keith to tell the story of how the recording came together, tend to more solemn reflection.

“Then suddenly completion is in front of you and there is no free time anymore,” he writes, and it’s easy to see the dual implication of a completed project and a completed life.

Keith passed away just as the CD was pressed, and it is unlikely he saw it in its final form.

The special edition release of Free Time is available only through the Candid Records web site, and is shipped from the UK. Cost is £9.99 plus shipping, which totals around $24 U.S. once you figure in the exchange rate. But all proceeds from the sales will go to Bart’s Mesothelioma Research, an organization in Britain dedicated to the treatment of mesothelioma.

I received my CD yesterday. Full of free-spirited modern jazz tunes highlighting Keith on saxophone, the CD is joyful and jamming and sometimes poignant. It is perhaps hardest to comprehend when mesothelioma steals the breath of those who create music, before it steals their life.