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!

I’ve posted about several mesothelioma fund-raising and awareness events during the past month, happening in places like Texas, New York, Florida and Pennsylvania. Activities have ranged from bike rides to walks and even a bowl-a-thon. Proceeds from these events have gone toward mesothelioma research, through the Mesothelioma Applied Research Foundation (MARF), or will benefit an individual, like Shanna Kurtz, in her personal battle against mesothelioma.

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!

This is a reminder for everyone in the Media, Pennsylvania, area that this weekend is the Racing for a Cure fund raising event where you can meet the drivers and see the cars that regularly race at the Bridgeport Speedway. The event is being organized by Bill Thomas Racing. Bill, Jr. , is a driver at Bridgeport and his dad, Bill Sr., recently was diagnosed with mesothelioma.

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.

The Mesothelioma Applied Research Foundation has announced the date for its 2009 International Symposium on Malignant Mesothelioma. The annual event will be held June 25-27 in Washington, D.C.

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.

As part of the International Symposium on Malignant Mesothelioma, held last week in Washington, D.C., 13-year-old Lexi Miletto presented a keynote address to more than 200 top-level cancer researchers, scientists and physicians, as well as mesothelioma survivors, caregivers and their families. The Symposium is an annual event presented by the Mesothelioma Applied Research Foundation (Meso Foundation). Lexi’s grandfather, Joe Miletto, died from mesothelioma three years ago.

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.”

The Mesothelioma Applied Research Foundation (MARF) will hold its International Symposium on Malignant Mesothelioma 2008 in Washington, D.C., June 26-28. The annual event 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.

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.”

The Mesothelioma Applied Research Foundation (Meso Foundation) has issued an “action alert” urging its constituents to call on their House Representative this week to support prompt passage of The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007 (H.R. 3339), sponsored by Rep. Betty McCollum (D-MN).

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!

This week the Mesothelioma Applied Research Foundation (MARF) announced that a National Mesothelioma Virtual Bank (NMVB) is now operative. The Meso Foundation’s advocacy efforts, in cooperation with medical and academic institutions, helped make this tissue bank a reality.

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.

In March, I posted that for the first time the Department of Defense (DoD) had appropriated funding for mesothelioma research as a priority within the department’s Medical Research Program, thanks in most part to the lobbying efforts of the Mesothelioma Applied Research Foundation (MARF, Meso Foundation). Today, TheHill.com reports that MARF, with the backing of more than a dozen senators, is pushing for continuing and increasing funds for mesothelioma research in the 2009 defense appropriations bill.

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.

I’m a little behind with this, since the Mesothelioma Applied Research Foundation (MARF) announced it in January, but I think it’s important enough to share in case there are others, like me, who didn’t know.According to a release on MARF’s website, the Department of Defense (DoD) Peer Reviewed Medical Research Program was appropriated $50 million in the Defense Appropriations bill that the President signed in mid-November 2007. For the first time, mesothelioma will be included as a research priority within the DoD’s Medical Research Program, which was set to begin in February.In the press release, Chris Hahn, executive director of The Meso Foundation, says, “The Meso foundation has been working with fifteen senators, led by Senator Max Baucus (D-MT), advocating the federal government to respond to the mesothelioma crisis through a commitment of new federal research dollars.”As a candidate research area within the program, mesothelioma investigators are eligible to compete for funding through the program’s 2008 grant cycle.For more information, read the full release online, or contact the Meso Foundation directly at (805) 563-8400.