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.

One of our readers, Erica Iacono, works with the New York Volunteer Chapter of the Mesothelioma Applied Research Foundation (Meso Foundation). She has asked us to help get the word out about an event scheduled in East Meadow, NY, April 13. Here is her release. If you live in that area, please get out and support this great effort!

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.

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.