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.

Last week I posted news that the federal Bureau of Land Management, under the direction of the Environmental Protection Agency, closed a 48-acre recreational area in California known as Clear Creek due to concerns about high levels of asbestos in the area. The land is a popular area for off-road hiking, biking and ATV adventures, with about 35,000 visitors a year. But now it seems that asbestos is a growing concern throughout a wide swath of California, where naturally occuring asbestos is prevalent. The Los Angeles Times reported May 2 about a community in El Dorado Hills, Calif., that is being investigated by the EPA for high asbestos levels.

Inspectors donned air filters and protective gear while running, biking and playing baseball and other sports in areas of the town to monitor asbestos levels. The paper reported that initial EPA assessments were worst along a creek-side trail in El Dorado Hills Community Park, where asbestos levels were 22-43 times higher than ambient air levels when stirred up by the common recreational activities tested.

It shouldn’t come as a complete surprise to the town. Already, the newspaper reported, asbestos concerns were responsible for a $2.5-million cleanup at Oak Ridge High School, including replacing the running track with a new all-weather surface.

Still, there is active ground clearing and new home construction throughout the town, with an affluent population and fine homes priced in the $700,000 range.

While some residents expressed concern, I was struck by the comments of residents who seemed to want to ignore the threat, or who refused to believe there would be a problem as a result of the asbestos. The Times quoted residents who “shrugged off” the news, saying “the whole thing seems like overkill.” Others objected to “the government” “overreacting,” saying “there’s risk in life whatever you do.”

One resident, who is worried about the effects on her children, recalling how her daughter brushed up clouds of asbestos-laden dust after a cheerleading routine, said, “Most people around here seem more worred about home values than health.”

The same types of risk dismissals are found in the Clear Creek story, where outdoor enthusiasts are vowing to fight the recreational area’s closing, telling the government to stop meddling and let them take the risk.

I just don’t understand this attitude. Asbestos is proven to be a danger, causing asbestosis, mesothelioma and other lung and stomach cancers. If people were told they were building their homes on radioactive land, or bike riding through Chernobyl, they would be concerned. Why is this deadly threat so much less apparent to them? Most seem to have the attitude that they will “worry about it later.”

What about the children? With the often long latency period for asbestos damage, youngsters exposed to asbestos now are at risk of developing problems in the prime of life. Are parents really willing to risk the lives of their children in order to not be “inconvenienced” or to “make their own decisions” independent of government recommendations?

If the EPA were to turn away from this danger, to issue a warning but not aggressively pursue closures and clean-up, what would the public say years from now, when people are affected with asbestosis and mesothelioma? “Where was our warning?” “Where was the government, to tell us there was danger?”

You can’t have it both ways.

Approximately 31,000 acres of public land in California’s Clear Creek Management Area (CCMA) have been closed to all forms of entry and public use by the U.S. Department of the Interior Bureau of Land Management, based on the results of an Environmental Protection Agency CCMA Asbestos Exposure and Human Health Risk Assessment. The closure order was issued by the Bureau on May 1.

The closure order states, “This closure is necessary to protect public land users from human health risks associated with exposure to airborne asbestos in the CCMA based upon a final report issued by the Environmental Protection Agency that concludes that public use activities could expose an individual to excess lifetime cancer risks. The order will remain in effect while the BLM completes a Resource Management Plan for the CCMA to determine if and how visitor use can occur without associated health risks.”

The risk in this area comes from natural deposits of asbestos. Asbestos is linked to mesothelioma, a deadly lung cancer.

The San Francisco Chronicle, on the SFGate.com web site, quotes Jere Johnson, a project manager with the EPA, as saying, “Frankly, we were surprised at how high the levels of asbestos are at Clear Creek. What we found is that there is a lot of asbestos in the soil, and when you disturb the soil it poses a health risk.”

Chronicle reporter Carolyn Jones says outdoor enthusiasts are not happy about the area’s closing, and are skeptical of the danger. She quotes Don Amador, Western representative for the Blue Ribbon Coalition, an outdoor advocacy group, as saying, “It’s unprecedented, as far as public land issues go. We’re going to want to fight it, either administratively or in court.”

The article says the area will most likely be off-limits for at least a few years, while the Bureau of Land Management completes its own study.

There will be a public meeting tonight at the Santa Clara Convention Center, 5001 Great America Parkway, from 6-9 p.m. There also will be an open house from 3-5 p.m. Additional meetings will be held from 6-8 p.m. May 19 at Veterans’ Memorial Hall, 649 San Benito Street in Hollister; and 6-8 p.m. May 21 at the Martin Luther King Jr. Library, Room 225, 150 E. San Fernando Street, San Jose.

If you live in the area, please let me know if you attend any of these meetings. We will follow this issue and let you know if there are new developments.

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.

Golf Digest magazine announced John Atkinson, a stage IV lung cancer survivor, has been selected to play as part of a celebrity foursome at Torrey Pines, the same course played by the pros at this year’s U.S. Open. Atkinson will play with NBC Today Show host Matt Lauer, Dallas Cowboys quarterback Tony Romo, and recording artist Justin Timberlake. The event will be broadcast on NBC Sports on Sunday, June 15, from 2-3 p.m. (ET), in the hour leading into NBC’s broadcast of the final round.

Atkinson was selected from more than 56,000 entries, voted on by the magazine’s readers. Never a smoker, he was diagnosed with stage IV lung cancer a little more than a year ago at age 38. He hopes to use the golf event as an opportunity to raise awareness for lung cancer funding and research.

In a press release from the Lung Cancer Alliance, which urged its members and supporters to vote for Atkinson, he is quoted as saying, “The game of golf to me is living. I am going out there to enjoy the golf course, to play a great round and to give hope to those who are faced with life threatening illnesses. If I can beat America’s deadliest cancer, then I can definitely break 100 [at Torrey Pines]. It’s going to be a great day, an emotional day, and I can’t wait.”

Lung cancer is the nation’s leading cancer killer, taking more lives than breast, prostate and colon cancers combined.

To enter the contest, Atkinson submitted a 100-word essay describing why he could break 100 at Torrey Pines. Once being chosen as a finalist, he received more than 48,000 of the 117,000 votes cast in the first U.S. Open Contest, conducted by Golf Digest, the United States Golf Association, and NBC Sports. You can watch a video interview with Atkinson and read other features about the foursome at Golf Digest online.

Those of us who work to raise awareness about mesothelioma, or who are facing the diagnosis for ourselves or with a loved one, tend to talk about it a lot. We corner people at gatherings and start warning them about the dangers of asbestos, or sharing the latest information about treatments and research. We barely need an opening to start talking about mesothelioma.

But now it’s even easier. MyMeso.org has several items we’d love to share with you that will help open doors to conversation - bracelets, pens and water bottles, all emblazoned with the words “mesothelioma” and “awareness.” We’d be happy to send you some of these to help you talk to other people about the dangers of asbestos exposure and the challenges facing those battling mesothelioma.

You can pretty much always count on seeing me with a bright blue mesothelioma awareness bracelet now. If you don’t see it, it’s probably because I’ve given it away when someone asked me about it, so they will remember to look for information after we’ve parted. I leave meso awareness pens in restaurants, hoping a curious diner after me will steal one and search to find out what it’s all about. I strike up conversations in the gym or at the park when someone sees my water bottle and asks, “what is that about?” It makes it really easy to spread the word!

Now you can help us raise awareness! You can have any of these items for FREE! Just send me an email and let me know what you need and where to send it. We will not share your information or use it for solicitation. We just want to help you help us share the news about this public health issue.

The more people we can educate about mesothelioma and asbestos danger, the closer we will come to securing funding for prevention, research and solutions.

Amy Peterson of the Lung Cancer Alliance posted to the LCA message board / support group on Inspire.com yesterday to let cancer survivors know about a new program that aims to provide hope and cheer during a difficult time. The LCA is partnering with Compassionate Communications, a company dedicated to connecting people in need of support and encouragement with people who want to reach out to them.

Compassionate Communications will operate a web site, which will be launched sometime this month, that will feature photos and information about people struggling with cancer, including mesothelioma, and other life-threatening illnesses. Visitors to the site can view profiles, and if they choose to register (for a fee of $25), they will receive five Hallmark greeting cards with pre-paid postage, to send to patients to encourage them, and other support materials. Twenty-five percent of the registration fee will benefit patient-serving organizations.

There is no charge for a patient to register his or her profile. The program operates in cooperation with Hallmark Business Expressions (a subsidiary of Hallmark Cards, Inc.).

Patients may download an “opt-in” registration form and waiver directly from the web site, or call 888-337-6416. The waiver must be completed and returned by mail or fax to Compassionate Communications, which will then provide participants with an account so they can set up their personal profile on the site. There is a place on the waiver form for patients to designate the patient-assistance organization they would like card-sender registration fees to benefit.

You may also get more information or ask questions by emailing Amy at the Lung Cancer Alliance at apearson@lungcanceralliance.org.

A while ago, I posted a series of stories from an interview with Rear Adm. Phil Coady (ret.) the Chairman of the Board of the Lung Cancer Alliance. In the interview, he talked about pulmonary fibrosis. Since that time, I’ve had several people wondering if pulmonary fibrosis is connected to asbestos or mesothelioma.

The American Lung Association explains that pulmonary fibrosis is also called interstitial pulmonary fibrosis or interstitial lung disease (ILD). These three terms are often used to describe the same condition.

ILD is not lung cancer; it is a chronic lung disorder. ILD involves a thickening of the lung tissue, which becomes stiff and makes breathing more difficult and demanding. ILD can take many forms, and may progress slowly or rapidly, depending on the individual and the nature of the ILD.

The Lung Association reports that the common link in ILD is that it begins with inflammation, which may affect different parts of the lung. Inflammation may lead to permanent scarring of the lung tissue, which is often called pulmonary fibrosis. The interstitum is the tissue between the lung’s air sacs. Scarring begins in this area, which lends the condition its formal name.

Known causes of pulmonary fibrosis include occupational and environmental exposures, including exposure to asbestos, which can damage the lungs and cause scarring (fibrosis).

Other possible causes include a disease called Sarcoidosis, side effects of medication, radiation, connective tissue or collagen diseases, or genetic predisposition, which is not as common. The familial form of the disease is often called familial idiopathic (of unknown origin) pulmonary fibrosis.

When I spoke with Admiral Coady, he mentioned that he did have a family history of pulmonary fibrosis. He knew that his family history, combined with his exposure to asbestos while serving in the Navy, put him at greater risk for the disease, and was vigilant about early screening. He did eventually develop the condition. Sadly, he also later developed lung cancer, although not mesothelioma.

Some ILD improves with medication if treated when inflammation occurs, and some people also need oxygen therapy as part of their treatment.

I hope this answers the questions and clears up any confusion. While pulmonary fibrosis is not related to mesothelioma, it could be considered an asbestos-related disease.

As part of my work to raise awareness about mesothelioma, other asbestos related diseases and lung cancer, I talk to a lot of people facing these diagnoses. I also read a lot of message boards and forums that deal with these issues and provide a sounding board for patients, families, caregivers and even medical professionals working in this field.

A couple of the best forums, in my opinion, are the Lung Cancer Alliance Survivors Support Community, and the many forums sponsored by the LUNGevity Foundation. Recently, both groups have been tackling a difficult topic - how to find joy in daily living when faced with a diagnosis that is often grim.

They ask, “what is the positive side of lung cancer? IS there a positive side?”

Many people credit the forums themselves as a positive, providing a network of new friends, and helping them to find a place where they can be uplifted by other people’s stories of success. They say forums like these help them find relief by sharing their own fears and finding answers to their questions, and by helping them learn they are not alone.

Many echo each other in their feeling that their experience with cancer has taught them to value each day, and not to wait for tomorrow to accomplish goals. That surely would be a blessing for all of us to learn, wouldn’t it?

Some lung cancer survivors handle their challenges with humor. Yesterday I mentioned Debbie, who lives in the UK, who started her own web site about her battle with mesothelioma, and who nicknamed her tumor “Theo,” and provides reports on his condition and sometimes addresses him personally in her blog.

A poster on the LUNGevity forum recently found the humor in a YouTube video, in which two teenage girls spoof a Justin Timberlake rap song, “My Love,” with their own version, “My Lung,” in which they express their affection for their lung health. It seems they made the video as part of a high school health project.

On a similar track, a friend who knows I write about lung cancer sent me a link to an odd little web site called “I Heart Guts,” which features, among other things, plush toys and t-shirts depicting happy, smiling internal organs, including a shirt bearing the slogan “I Lung You.”

What about you? If you have been diagnosed with mesothelioma or another asbestos disease or lung cancer, or if you are helping a family member or friend, how do you find peace and inspiration? What helps you?

One of the things I’d like for this site to do is to provide a resource for people struggling with meso, and a place to network and share ideas. Post your story to the Meso Map, or leave a comment to let me know what inspires you. Tell me if there’s another forum you like, or a web site with good information that I should add to my page’s blog roll.

This site is here for you.

A compromise has been reached in the Minnesota legislature over funding for a mesothelioma research study. MyMeso has been following the progress of a bill in the Minnesota House that would provide $4.9 million to fund a study of mesothelioma and asbestos disease in the state’s Iron Range miners. More than 58 taconite miners have died from mesothelioma or other asbestos disease.

There was some controversy over the source of the funding when the bill was introduced in the House. Gov. Tim Pawlenty objected to the proposed funding source, a special state worker’s compensation fund, fearing it would raise premium costs for businesses that use the fund. The governor had threatened to veto the bill unless an alternate funding source was established.

An amendment proposed by the Minnesota Senate yesterday afternoon would fund the bill from a Department of Commerce fund, which is an “assigned risk” worker’s compensation fund.

The money will fund a five-year research project headed up by the University of Minnesota, which will review the health of miners and spouses, study the health records and occupations of miners who died and analyze the air quality in and around the mining communities.

The Senate has indicated support of the revised bill, with a final vote expected early next week. It will then move back to the House, where it also is expected to be met favorably.

According to TwinCities.com, a Pawlenty spokesman said the governor supports the amended bill and “believes it’s very important that this study moves forward.”