The Asbestos Disease Awareness Organization (ADAO) has announced a social media campaign focused on the lives of 12 mesothelioma victims in order to help Congress understand the dangers of asbestos exposure and encourage legislators to ban the substance once and for all. (more…)
Posts Tagged ‘Mesothelioma Awareness Day’
On Friday, Sept. 26, National Mesothelioma Awareness Day will shed light around the nation on a dangerous form of cancer. Established in 2004, this awareness day, established and promoted by the Mesothelioma Applied Research Foundation (Meso Foundation), has been the driving force behind the movement to bring attention and funding to mesothelioma research. In the past ten years, National Mesothelioma Awareness Day has raised nearly $1 million, received numerous local, state, and national government proclamations, and been the focus of dozens of media stories. Volunteers around the country unite to spread their message about mesothelioma through events and activities on this day every year. (more…)
The Mesothelioma Applied Research Foundation has issued a news release announcing the resolution introduced last week in the U.S. Senate by Sen. Patty Murray to designate September 26 as National Mesothelioma Awareness Day has passed! The resolution introduced simultaneously in the House of Representatives by Rep. Betty McCollum, designated as H.Res. 771, is still pending.
The Meso Foundation is urging the mesothelioma community to contact their House Representative to urge him or her to co-sponsor the bill. Representative McCollum still needs 13 more co-sponsors to complete the passage of National Mesothelioma Awareness Day in both the House and the Senate.
The news release quotes Chris Hahn, Executive Director of the Mesothelioma Applied Research Foundation, “Thanks to the concern of Sen. Murray and Congresswoman McCollum, and their introduction of the federal ‘National Mesothelioma Awareness Day’ resolution, we hope that mesothelioma will finally become part of a broad national conversation about its tragic impact in our society and the critical need to fund reserch to develop treatments and, ultimately, find a cure for mesothelioma.”
Your help is urgently needed to encourage House Representatives to co-sponsor this resolution. Visit the Meso Foundation’s “Action Center” at www.curemeso.org/action to send an email to your congressional representative.
Resolutions were presented in both the U.S. House of Representatives and the U.S. Senate on Friday, Sept. 25, to recognize September 26, 2009 as National Mesothelioma Awareness Day. The Senate resolution was sponsored by Sen. Patty Murray and the House resolution was sponsored by Rep. Betty McCollum. Both legislators have been longstanding supporters of efforts to increase awareness of and funding for mesothelioma research, as well as to ban asbestos in the United States.
A news release from Sen. Murray’s office quotes her as saying, “The dangers of asbestos went unrecognized for far too long, wtih tragic results for so many workers and families across the country who developed mesothelioma and other asbestos-related diseases. National Mesothelioma Awareness Day is an opportunity to raise awareness of efforts to treat this deadly disease and support the victims and their families. I am committed to continuing my work fighing to ban asbestos in the United States and educating the American public about the deadly consequences of asbestos exposure.”
The release also quotes Rep. McCollum. She says, “Too many Americans don’t know that asbestos exposure remains a problem. Enacting National Mesothelioma Awareness Day (H.R. 771) is an important step towards educating the nation about the causes of this deadly disease. I will continue to work with Senator Murray and my colleagues in the U.S. House to finally ban asbestos and provide real help for those suffereing from mesothelioma and their families.”
Here is the full text of the resolution:
Whereas there is no known safe level of exposure to asbestos;
Whereas millions of workers in the United States have been, and continue to be, exposed to dangerous levels of asbestos;
Whereas the National Institutes of Health reported to Congress in 2006 that mesothelioma is a difficult disease to detect, diagnose, and treat;
Whereas the National Cancer Institute recognizes a clear need for new treatments to improve the outlook for patients with mesothelioma and other asbestos-related diseases;
Whereas the need to develop treatments for mesothelioma was overlooked for decades;
Whereas even the best available treatments for mesothelioma typically have only a very limited effect, and a person diagnosed with mesothelioma is expected to survive between8 and 14 months;
Whereas mesothelioma has claimed the lives of such heroes and public servants as Admiral Elmo Zumwalt, Jr., and Congressman Bruce F. Vento;
Whereas many mesothelioma victims were exposed to asbestos while serving in the Navy;
Whereas it is believed that many of the firefighters, police officers, and rescue workers who served at Ground Zero on September 11, 2001, may be at increased risk of contracting mesothelioma in the future; and–
Whereas cities and localities throughout the United States will recognize September 26, 2009, as ‘‘Mesothelioma Awareness Day’’: Now, therefore, be it Resolved, That the Senate designates September 26, 2009, as ‘‘National Mesothelioma Awareness Day’’; and calls on the people of the United States, Federal departments and agencies, States, localities, organizations, and media to observe National Mesothelioma Awareness day with appropriate ceremonies and activities.
For more information, visit Senator Murray online.
According to the Jackson NJ Online, New Jersey Senator Tom Kean (R-21) has introduced legislation to declare Sept. 26 as Mesothelioma Awareness Day in New Jersey annually. The legislation, SJR-77, has been approved by the New Jersey Senate and is waiting for consideration in the General Assembly.
The report quotes Sen. Kean as saying, “We don’t have a cure or standard treatment yet for mesothelioma, so we need to learn more about this disease and spur the development of effective treatments.” He says that designating a statewide annual recognition of Mesothelioma Awareness Day will help ensure that the public and policymakers do not forget the importance of mesothelioma awareness, and help promote funding for research.
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The Kansas City Tribune features a touching story about Wendell and Elizabeth Mason. Wendell passed away as a result of complications from mesothelioma in December 2006 at age 65. He was employed for 25 years as a truck driver and insulation fabricator, where it is believed he was exposed to asbestos on the job.
The story, written by Tom Bogdon, says Wendell’s widow, Elizabeth (Beth), and his three grown children will wear t-shirts featuring a photo of Wendell on Saturday to draw attention to Mesothelioma Awareness Day. They also have obtained a proclamation from Olathe, Kansas, Mayor Michael Copeland declaring Mesothelioma Awareness Day in the city.
The report quotes Beth Mason as saying, “We want people to stop and think. Asbestos is still out there. We don’t want other families to go through what we’ve been through. Wendell and I were robbed of our retirement together.”
Read the full story at the KC Tribune’s web site.
It was Cheryl Cotton’s third time attending the Mesothelioma Applied Research Foundation’s annual International Symposium on Malignant Mesothelioma when I met her this past June. We were both seated in the hotel lobby, waiting for a bus to take us to Capitol Hill, where we would ask our legislators to support a complete ban of asbestos and for funding for mesothelioma research.
I think it was Cheryl who introduced herself first, and I was delighted to hear she was from my home state, Alabama, about two and a half hours north of Montgomery, in Anniston. When I told her I was from Montgomery, she was ecstatic to finally find someone with a meso connection in her home state.
Cheryl lost her husband, Virgil, to mesothelioma on May 31, 2005, just two days after their 40th wedding anniversary. She began attending the Meso Foundation conference almost immediately, urgently needing to connect with others who might understand what she was going through, and to make sense of a disease that took her best friend and love of her life before either of them fully realized what was happening.
Virgil first began to notice something was wrong in late March 2004, when he had a severe pain in his side. His hobby was restoring vintage automobiles, and he had been working on a friend’s car, so he thought he had possibly just bruised a muscle while working. But shortly after that he developed a terrible cough.
“It was a whole-body cough,” Cheryl recalls. “Like from head to toe.”
Virgil went to see his doctor, who thought the cough might be related to a drug he was taking following a heart catheterization, which he’d had earlier that year.
“The doctor said it would take 60 days or so to get the drug out of his system, so basically for two months we did nothing,” Cheryl says. “The pain in his side persisted, and the cough got worse. Right up until this time, after his heart problems, he had been dedicated to cardiovascular exercise and eating right. He was probably in the best shape he’d been in for years. He would actually get onto to me about exercising more and eating right,” she recalls with a laugh before turning sober again. “So this was just odd. He kept feeling sicker and sicker.”
He went back to the doctor, thinking maybe there was something wrong with his heart. Tests showed his heart was fine, and doctors sent him home and told him to just continue to exercise and eat right.
But Virgil began having trouble breathing. It was September by now. He visited the doctor again, and was referred to a pulmonary specialist for a thoracentesis. They found fluid in his lungs, but tests came back negative for cancer or any type of infection. But the fluid came back almost immediately.
Cheryl was getting really worried.
“He was used to being active, but now he could hardly get around. He had no energy,” she remembers. “We had requested referrals to see some doctors in Birmingham, because he was dying in front of me. I knew there was something more going on, and I couldn’t understand why nobody could tell us. We had two more thoracenteses and still no diagnosis. The local doctors said they didn’t know what was wrong with him.”
At this point, Cheryl decided to call Birmingham, and talked to a nurse at UAB Medical Center. She got a referral for a pulmonary specialist, and made an appointment for Virgil the following week. But when they got to see the doctor, he said Virgil actually should see a thoracic surgeon, and gave them another referral. They gathered all Virgil’s test results and visited the thoracic surgeon on December 14. An initial theory was that Virgil might have a collapsed lung and scar tissue.
“Virgil had really gone downhill,” Cheryl said. “He was aging. Things had fallen apart in nine months, since the first symptoms.”
Doctors decided to do a thoractomy, but because it was Christmastime, they decided to wait until January, telling Virgil and Cheryl to go home and enjoy the holidays with their family. He finally had the surgery Jan. 4, and they first heard the word mesothelioma. But the diagnosis still wasn’t definite until about 10 days later.
“At that point it was stage 2+ or 3-. It was already advanced. We were referred to a doctor for chemotherapy, but still nobody was really telling us much about what this diagnosis meant. We had no idea.”
Virgil underwent a series of chemotherapy treatments, and then on April 20 began receiving radiation at a cancer center in Birmingham.
“By then, his breathing had deteriorated and they’d put him on oxygen,” Cheryl said. “He’d really not been able to lie flat since September. He had to prop up in a recliner or on a pallet on the floor.”
On May 19, a Thursday morning, Virgil woke Cheryl and told her something was wrong and that he felt he needed to go to the hospital. They went to UAB. On May 21, the doctor came in and told them Virgil was not improving, and that he didn’t have long to live. She estimated two and half to three months, and advised them to get their affairs in order.
“This was the first time anyone really talked to us about dying. Everyone was telling us he had time, that there was all this time.”
They called in Hospice care, and their daughter, Pam, came to visit, bringing their grandson and making a video of Virgil and the boy. On May 30, Virgil began doing worse, and passed away the next day. This was just nine days after they’d first been told that Virgil’s condition was terminal, and about 15 months since his first symptoms.
Cheryl was in shock. “He was 60 years old and had been in prime health,” she says. “When he died, he looked like he was 90. I didn’t even realize how bad he looked because I guess I saw him every day. Months later, I watched the video Pam had made just before he died, and then I really saw it.”
Virgil’s illness had been such a whirlwind; Cheryl wasn’t quite sure what to do after his death. She still couldn’t quite believe it had even happened. She was angry, that Virgil went so long with no diagnosis and no treatment. She felt guilty, like she ought to have somehow known more, or done more. And she felt alone.
Some time after Virgil was diagnosed with mesothelioma, Cheryl found the Mesothelioma Applied Research Foundation, a non-profit organization dedicated to the elimination of mesothelioma through outreach, education and funding research efforts to find a cure. She also connected with Sue Vento, the widow of Sen. Bruce Vento of Minnesota, after whom the pending “Bruce Vento Ban Asbestos and Prevent Mesothelioma” legislation before the U.S. Congress was named.
“She emailed me and I think called me, too,” Cheryl says. “She sent me a book on meso as well. She was the calm in the middle of my storm, and has kept in touch with me during this time via emails.”
Following Virgil’s death, Cheryl decided to attend the Meso Foundation’s annual International Symposium on Malignant Mesothelioma, and packed her bags for the trip to Washington, D.C. Many of her friends couldn’t understand it, but she says it was something she had to do.
“I somehow found MARF and the main reason I went to the conference that first year was to have someone to share this pain, and try to come to some conclusions,” she said. “You feel like you didn’t do something you should have. We had never heard of the word until they told us the diagnosis.
“I really felt like … when you lose your husband, who had been my friend, before he was my sweetheart – we’d known each other since we were 12. I felt if there was some way I could reach out to someone else it would help me as much as maybe I could help them. I felt there was that need in my heart, to find out as much as I could about the disease,” Cheryl says. “It was wonderful to know that people were surviving. But it makes me angry that Virgil didn’t have a chance.”
She had a chance to meet her “rock,” Sue Vento, at that first conference as well. Since that time, Cheryl has attended the Symposium for three years in a row, where she is active, joining others in visiting Capitol Hill to ask Congress to ban asbestos, and to fund mesothelioma research. She is also active in her community, talking to people about the dangers of asbestos exposure and about mesothelioma. She takes brochures about mesothelioma to doctors’ offices, hoping to increase knowledge among the medical community, hoping that someone else may be diagnosed early enough for treatment.
“Now I have contact with more people who are battling mesothelioma, and I learn that most people also have never heard of it. At the time, you just have to hang in there, and you can fall apart later. So I try to connect and just try to help someone, to let them know that someone is there who understands what they are going through. And it helps me too,” she says.
“I share my story every chance I get. I wear an awareness pin. People need to know asbestos is out there and it’s killing people.”
Outreach is hard. Every time she shares Virgil’s story, the pain is fresh again. But Cheryl is determined, and she’s willing.
“Mesothelioma patients and their families are victims,” Cheryl says. “They are victims of asbestos. And all of this COULD and SHOULD have been avoided!”
The Mesothelioma Applied Research Foundation is sounding a call for supporters to let Congress know we are in favor of a NATIONAL Mesothelioma Awareness Day. This is an immediate need, with a deadline of NOON tomorrow, September 24, Eastern Time. Here is their announcement with instructions about how YOU can help!
We need your support today for the Federal Government to issue a National Mesothelioma Awareness Day Proclamation! Representative Betty McCollum in the House of Representatives is about to introduce a National Proclamation of Mesothelioma Awareness Day. She needs as many co-sponsors in the House of Representatives as possible by 12 noon tomorrow (September 24th, Eastern Time).
To ask your Representative to support Representative McCollum in raising awareness for mesothelioma in our country, please visit our Action Center (www.curemeso.org/action) and send an email now! Together we can raise public awareness of this tragic disease and of the need to develop treatments and a cure!
Mesothelioma Awareness Day will always hold a special significance for Mary Elo. On August 15, 2009, her father passed away as a result of mesothelioma. That alone would mark the day for her, but even more significant, her Dad, George Elo, was just short of his 77th birthday – which is Sept. 26, the same day designated as Mesothelioma Awareness Day.
Her father first started getting sick a couple of years ago, Mary recalls. He had a constant cough, and began losing weight and experiencing shortness of breath. He went to see his primary care physician, and was diagnosed with pneumonia. This happened several times, and always the story was the same. He even had fluid on his lungs, and he would have a short hospital stay, and even though the fluid was tested, there was no diagnosis and he would return home, Mary says.
“We had not heard of mesothelioma before he got his diagnosis,” Mary says. “The doctors didn’t seem to have any sense of urgency to find out what was going on. I began looking on the internet, and he had seven of the nine symptoms for mesothelioma.”
At that point, Mary insisted her father receive a biopsy to find out what was going on with the recurring fluid in his lungs. On June 2, 2009, they received the diagnosis – epithelioid pleural mesothelioma. By the time he was diagnosed, he was already in stage 4. Despite trying chemotherapy, he passed away by August 15.
“The system failed my father,” Mary says. “There was just no sense of urgency.”
A Navy veteran, her Dad was being treated at the VA medical center for an atrial fibrillation, and had been on coumadin for a few years. When he began having his bouts of pneumonia, the doctors at the VA called for an MRI / PET scan, and his May 12 test records indicated a suspicion for mesothelioma. But her parents couldn’t read the paperwork, and the primary care physicians somehow missed the notation, Mary says. He had several thoracenteses, yet never had a diagnosis for mesothelioma until Mary insisted on a biopsy nearly a month later after reading about meso online.
“I was the internet MD at this point,” she says. “It drove my father crazy,” she recalls. By the time he was diagnosed, her Dad, who was 6’1”, weighed only 132 pounds.
Despite the advanced state of his mesothelioma and the toll it had already taken on his body, Mary says her dad immediately began talking to the doctors about treatment options. “He went through this whole process wanting to fight it,” she says. “He did not give up until the very end, and was willing to do anything necessary. He was definitely a warrior.”
Even while his illness sapped his strength and breath, and his chemotherapy caused him physical pain, he barely let it show, Mary says. He was still the rock of the family, looking after his wife of 55 years, Betty, along with his five kids, Mary and her sisters Lisa, Linda and Midge, and their brother Billy; as well as 8 grandchildren and one great-grandchild, all of whom live in Texas, spread out in San Antonio, Austin and Dallas.
“He put a strong face on it, even though he was struggling to breathe every day,” Mary says.
Now, the family is working to raise awareness, hoping to help other families make the diagnosis earlier, and to prevent exposure to asbestos in the first place.
“It seems like after we found out about my Dad’s diagnosis, we heard more about mesothelioma. I was watching the news after my father’s diagnosis and they were talking about Libby, Montana. Speaking to two of my friends, I found that their fathers had died from meso, and one girl’s grandmother died of mesothelioma. A contractor right here in our building, his mother is living with meso and his father passed away as a result of meso. It seems like it’s all around me.”
Mary and her family are working on awareness efforts in their cities. Mary got Austin Mayor Lee Leffingwell to sign a petition declaring Mesothelioma Awareness Day in the city, and she is working with Texas State Senator Mario Gallegos, Jr., whose father also died of mesothelioma, to create a proclamation in her father’s honor. Her goal is to get a permanent designation for Mesothelioma Awareness Day in the state of Texas.
Additionally, Mary is working with her local running clubs to establish a “Miles for Meso” event similar to the one that is taking place in Alton, Illinois, on Sept. 26 this year. She hopes to have that established and hold the inaugural race in time to celebrate Meso Awareness Day – and her Dad’s birthday – in 2010.
Montgomery Mayor Todd Strange has officially designated Saturday, Sept. 26, as Mesothelioma Awareness Day in Montgomery, Alabama. The recognition goes hand-in-hand with a nationwide Mesothelioma Awareness Day campaign under the direction of the Mesothelioma Applied Research Foundation (Meso Foundation).
Mesothelioma is a deadly cancer that most often affects the lining of the chest and lungs, but which also may affect the lining of the abdomen or, more rarely, the heart. It is caused only by exposure to asbestos. The latency period for mesothelioma is generally long, spanning 10 to 50 years from the time of exposure to any symptoms developing, making it hard for mesothelioma sufferers to pinpoint when they were exposed. There is currently no know cure for mesothelioma.
In the past, mesothelioma was seen primarily in older men, who had worked in factories, as insulators, or in shipyards, where asbestos was commonly used. However, today, the disease is being diagnosed more frequently in younger people and more often in women. Most of these cases are the result of secondary exposure, such as family members exposed to asbestos dust on the clothes of someone who worked with the substance. It could also be the result of environmental exposure. Mesothelioma has become everybody’s problem.
Asbestos is still not completely banned in the United States.
It seems that I am surrounded by stories of strong women who are enduring the loss of their husbands as a result of mesothelioma. In the middle of last week, I had lunch with my friend Cheryl Cotton, in Anniston, Ala., who lost her dear husband, Virgil, to mesothelioma three years ago. She and I met at the Meso Symposium in Washington, D.C., in June and have been corresponding by email ever since, but it was a treat to get to visit her in person. I’ll be featuring her story on this site in September, during the week leading up to Mesothelioma Awareness Day, on Sept. 26.
I was also contacted by a woman in Texas, who hoped that I could put her in touch with another woman who had lost her husband to mesothelioma. Her anniversary was approaching, and she needed to reach out to someone who would understand. Of course Cheryl willingly contacted her to lend an ear.
Then, on Friday I posted a story about a photographer in Australia, Chris Ireland, who has created an exhibition of stunning images of mesothelioma widows, called Breathe. The fourteen portraits capture the sadness and strength of these suffering ladies, and also hope to capture a bit of the men they loved. Ireland spent two years on the project, becoming closely acquainted with each of the ladies he photographed. I contacted Chris and was delighted to learn that he does have plans to bring the exhibit to the UK and to the U.S. in the coming months, and I hope that myMeso can be a part of that. I will keep you posted.
Next, I came across a story in the Morgan County Herald, a community newspaper based in McConnelsville, Ohio, which featured the story of Karen Huffman, who recently donated $3,000 to her area Kiwanis-Jaycees for the construction of a new walking trail at the community park in Malta in honor of her late husband, Danny, who passed away from mesothelioma on July 31, 2006, just four months after his diagnosis.
According to the report in the Herald, Mrs. Huffman says her husband most enjoyed his daily walks, not just for exercise, but as his quiet time to commune with God. She said he walked two or three miles each day except Sunday. It was during one of these walks that he became breathless, and unable to make it back to his home. At that point, she says, he couldn’t deny something was terribly wrong.
“Danny would have been the first walker on that trail,” the Herald quotes Mrs. Huffman as saying about the new park.
I wonder, as I read this latest news, why it seems there are so many stories of this kind around me now. Have they always been there, but my work with mesothelioma has made them more visible to me? I hope that it means that there is more awareness in the United States, and around the world, of mesothelioma, and the dangers of the asbestos that causes it.
I hope, somehow, that this site can make connections or provide the news that will bring some sort of ease, or at least a sense of community, of not being alone. It is a terrible sisterhood these women share. But perhaps just knowing there is someone else who understands will bring a small measure of comfort.