This is a reminder to those who haven’t yet contacted their representative in U.S. Congress about H.R. 3339, the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act. Please take the time to do this right now! It’s very important to let your Representative on Capitol Hill know that you support this measure to finally ban asbestos in the U.S. and provide funding for mesothelioma research.

The bill is currently in committee, with the House Committee on Energy and Commerce. Even if your district’s representative is not on this committee, it is important to let him or her know that you support the bill so that they know how to vote. The more voices they hear from their constituency, the better chance they will pay attention when this finally comes to the House floor.

If your representative IS a member of this committee, it is even more important. Many bills “die” in committee, never making it to a vote of the full House or Senate. Please make sure your representative helps get this bill approved in committee and to the floor for its vote.

My representative, Terry Everett (2nd District, Alabama), acknowledged his receipt of my request with a letter, in which he said he will keep my thoughts in mind should the bill make it to the floor, although he is not a member of the Committee on Energy and Commerce.

According to information provided by Everett’s office, H.R. 3339 would require several actions to be taken by the federal government in addressing asbestos and its harmful effects. The Environmental Protection Agency (EPA) would establish a plan to increase awareness of the dangers posed by asbestos-containing materials in homes and workplaces and encourage participation in research and treatment endeavors of asbestos-related disease patients.

The bill also would require the disposal of asbestos-containing materials within two years and the prohibition on the importing, manufacturing, processing or distributing of asbestos-containing materials, except for specific exemptions sought by the Department of Defense and National Aeronautics and Space Administration.

If you are not sure of the representative for your Congressional District, visit the House of Representatives online. You can also find out here if your representative is a member of the House Committee on Energy and Commerce.

Please take the time to do this today. Your one voice is SO important. Let it join thousands of others to finally make a real difference.

I was very sad today to learn that Rear Admiral Phil Coady, U.S. Navy (Ret.) passed away yesterday, June 30. Admiral Coady served as Chairman of the Board for the Lung Cancer Alliance, and was kind enough to share his story with this blog in April. A non-smoker, Coady was diagnosed with non-small cell lung cancer in 2005. The diagnosis spurred him to advocacy, particularly on behalf of Veterans.

Although Coady didn’t suffer from mesothelioma, he was very much aware of the risks posed by asbestos. His work during his time in the Navy very often put him in contact with the substance, he said, and seven of his friends died from mesothelioma since his retirement. In addition, for 10 years following his retirement, Coady worked as president of the Navy Mutual Aid Association, a non-profit veterans benefit group and life insurance service, where he said he saw what he thought was a disproportionate amount of lung cancer deaths.

When he began investigating lung cancer research efforts, Adm. Coady was shocked at the relatively few dollars spent by the Veterans Administration and the U.S. Department of Defense, considering the number of veterans affected by the disease. He also was disappointed at the overall lack of funding for lung cancer research in comparison to spending on other cancers, especially since lung cancer is the leading cancer killer.

He dedicated himself as Chairman of the Board for the Lung Cancer Alliance, fighting the battle for lung cancer awareness and funding under the organization’s motto “No More Excuses. No More Lung Cancer.” He led efforts in lobbying Congress to make lung cancer a national health priority.

Just last week, Coady saw some of the first fruits of his efforts, when Senators Dianne Feinstein (D-CA) and Chuck Hagel (R-NE) introduced legislation in the U.S. Senate creating and authorizing at least $75 million for lung cancer research. This is the first ever multi-agency, comprehensive program targeted at reducing lung cancer mortality.

Perhaps the best memoriam Adm. Coady could receive is for supporters of lung cancer awareness and research to contact their U.S. Senators NOW and ask them to add their support to S. 3187, the Lung Cancer Mortality Reduction Act. Remember him and take action for those to come after him! You can view his obituary here.

Blessings to Adm. Coady’s family at this time of loss.

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.”

Today, the U.S. Senate is considering landmark legislation that will create a multi-agency, comprehensive program to target lung cancer, and that will authorize $75 million for the first phase of a five-year program to reduce lung cancer mortality. the Lung Cancer Mortality Reduction Act of 2008 was co-sponsored by Sen. Dianne Feinstein (D-CA) and Sen. Chuck Hagel (R-NE). Mesothelioma sufferers can benefit as a result of this increased focus on lung cancer research and early detection.

Senators Feinstein and Hagel were instrumental in authoring a policy resolution in 2007 to designate lung cancer as a public health priority, which was passed unanimously. The resolution called for research, better treatments, and early detection, with a goal of reducing lung cancer mortality by 50 percent by 2015.

This new bill would establish that comprehensive program under law and authorize funding, according to a release from the Lung Cancer Alliance, which today issued a call to action for its support.

“We have seen great advancements in prostate and breast cancer survival rates and we must commit ourselves to making the same progress with lung cancer,” Sen. Hagel said, noting that lung cancer currently accounts for 28 percent of all cancer deaths in the United States.

Each year, lung cancer kills more people than breast, prostate, colon, kidney, melanoma and liver cancer, combined.

Senator Feinstein said, “It’s time for the federal government to step up its efforts and make fighting lung cancer a national priority.”

Contact your Senator TODAY!

I hope everyone had the chance to watch John Atkinson play the U.S. Open golf course at Torrey Pines, California, as part of a celebrity foursome with NBC Today Show anchor Matt Lauer, Dallas Cowboy player Tony Romo and entertainer Justin Timberlake. The event was broadcast on NBC Sports on Sunday, Father’s Day.

I’ve posted about John several times on this site. He was selected by the readers of Golf Digest magazine to participate in this first-ever celebrity foursome event. Diagnosed with Stage IV lung cancer, John used the event as a chance to raise awareness about lung cancer and to inspire those with the diagnosis to keep meeting the challenges of everyday life, and taking advantage of life’s unique opportunities.

This morning, Matt Lauer interviewed John and his brother, Kevin, who caddied for his big brother on the last hole in an emotional show of support. Watch the video at MSNBC.com.

In addition to this video, the Lung Cancer Alliance has the first part of what will be a multi-part documentary about John’s battle against Lung Cancer up on its site. John is a spokesperson for the organization. Watch the first episode at the LCA web site.

John has made it his mission to raise awareness about lung cancer, with the hopes of increasing funding for research and treatment. His campaign gives hope to everyone who battles lung cancer in its many forms, including those fighting mesothelioma, which affects the lining of the lungs. Thank you, John, for your willingness to go that extra mile!

Just a quick update on John Atkinson. I’ve posted many times this week about the lung cancer survivor, who will play in a celebrity foursome on the U.S. Open Torrey Pines course in California with entertainer Justin Timberlake, NBC Today Show anchor Matt Lauer, and Dallas Cowboys star Tony Romo. John’s round of golf will be televised on NBC Sports at 2 p.m. EDT on Sunday, June 15. But I need to clarify that John is actually playing his round TODAY, Friday, June 6.

He arrived in California yesterday for a practice round, and will tee off with the celebrities in front of 250 spectators, along with camera crews and journalists, tomorrow. His final round and his score will be televised on June 15 as part of the lead-in to the U.S. Open coverage. The special will feature clips from the 18 holes of golf. John vows to break 100 on the tough course, with a goal of shooting an 89.

You can still sign up to sponsor John as part of his U.S. Open adventure, with funds going to lung cancer research and awareness. He is encouraging people to agree to double their pledge if he makes his goal of breaking 100. Find a sponsor form at the Lung Cancer Alliance web site. GO JOHN!

Lung cancer survivor John Atkinson, who I mentioned yesterday, continues to be in the news. Selected by Golf Digest magazine to play as part of a celebrity foursome on the U.S. Open course on Father’s Day, June 15, he is using this opportunity to speak out about lung cancer awareness and research. Of course, mesothelioma is a type of lung cancer caused by asbestos, and affects the lining of the lungs.

Today there was a great article in the Detroit Free Press about Atkinson. The article states that Atkinson considers his “Achilles heel” in the competition to be the fact that he’s never played the tough Torrey Pines U.S. Open course, not that he has lung cancer. The avid golfer was on the links shortly after his diagnosis (he shot a 78) and walked the course after completing four rounds of chemotherapy. His goal for the celebrity tournament is to break 100.

You can also keep an eye out for Atkinson on NBC Nightly News tomorrow, June 5. He is scheduled to appear, barring any unexpected national events that bump him from the slot.

Atkinson will be teamed with celebrities Justin Timberlake, NBC Today Show anchor Matt Lauer, and Dallas Cowboy star Tony Romo in the tournment, which will be aired on NBC Sports at 2 p.m. ET June 15.

How wonderful that Atkinson has this chance in the spotlight to talk about lung cancer, and to promote efforts to increase funding for research and to raise awareness. He also is an official spokesman for the Lung Cancer Alliance.

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.”

Last week I helped spread the word that Lung Cancer Alliance advocate John Atkinson has been selected by Golf Digest magazine to play the U.S. Open golf course, on Father’s Day, June 15, as part of a celebrity foursome with NBC Today Show’s Matt Lauer, entertainer Justin Timberlake, and NFL star Tony Romo. He plans to use the opportunity to advocate for lung cancer awareness and research. NBC Sports will broadcast the celebrity event from 2-3 p.m. ET, where John hopes to break 100 on the tough Torrey Pines course.

John was diagnosed with stage IV lung cancer a little more than a year ago at age 38. He was selected from among 56,000 people who entered a contest sponsored by Golf Digest, the United States Golf Association and NBC Sports to play the U.S. Open Course as part of the celebrity team. You can read more of his inspiring story at Golf Digest online.

In addition to raising awareness, John and the Lung Cancer Alliance would like to use this event as an opportunity to raise funds for lung cancer research. They are encouraging people to make a donation or pledge to LCA in John’s honor. There’s even a great idea for a “game day” event, where lung cancer awareness supporters can collect pledges and host a pledge party with family and friends. John is urging donors to consider doubling their pledge amount if he breaks 100!

Visit the Lung Cancer Alliance U.S. Open pledge page for donation information, pledge party forms, and links for help and more information.

What a GREAT opportunity to raise the profile of lung cancer awareness, and communicate to America – and beyond – what an important issue this is for national health! Watch for John in the coming weeks, as he is scheduled to appear on national news programs like NBC Nightly News, The Today Show and The Tonight Show. I’ll try to update when his appearances are scheduled.

I received an email a few days ago from Nancy Wagner, in Jacksonville, Florida. She found our site through the Lung Cancer Alliance message and journal sites, over at Inspire.com. She wanted some mesothelioma awareness materials, like our awareness bracelets, to share with people around her, in memory of her father, Bill, who passed away with mesothelioma in 2004. Nancy was kind enough to share her Dad’s story with us:

My Dad, Bill [Hackett], was a master mechanic and boilermaker from the time he was 25 until he retired on disability at age 61. During this time he dismantled and rebuilt or built boilers to run some of the company’s largest factories and businesses. He started out at Maryland Ship Building and Dry Dock and then went on to become an independent contractor.

Over the years he was exposed to asbestos hundreds of times, not knowing back then that it would be what eventually claimed his life.

From the time he was retired due to this disability until his death in 2004, he suffered tremendously with breathing disorders from mesothelioma. He faced several surgeries and had to have fluid removed from his body numerous times. There were days he could hardly breathe at all, but he kept going. How I will never know.

Because he had been self employed, there was no insurance because he could not afford it. And social security did not pay very much on a monthly basis. Being a decorated WW II veteran, he was entitled to some treatment through the Veterans Administration.

My father was a very independent man and refused to give up or give in to anything that stopped him from doing what he wanted and going where he wanted. And he refused to be a burden on any one, especially his daughters. Until the week he died he continued to serve as Chaplain of the American Legion Post and made arrangements for former veterans’ funerals and assisted their families.

But he never told us about the cancer. He went to all of his chemo appointments and never told us anything. It wasn’t until after his death and the Death Certificate was issued did we know this is what took him. He died alone, 2 weeks before Christmas, in the house where we grew up.

My dad was truly a great man. I believe the reason he never told any of us was because we lost our Mom to cancer when she was 34 and he was 36 and he didn’t want us to have to face losing him to cancer, even though it was a different kind.

Almost 2 years after his death, I found out that I have stage IV lung cancer.

Cancer in any form is life threatening. The more people are aware of the signs and symptoms of cancer, the better off they will be. Annual checkups are vital. Don’t wait until it’s too late. Cancer caught early can be cured. The later the stage, the more intense the treatments and the less chance for remission.

I’d just like to thank Nancy for sharing her Dad’s personal story with us, and for helping to raise awareness and urge for early detection and research. God bless you.