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!

Traditionally, April 1 has been designated by the Asbestos Disease Awareness Organization (ADAO) as Asbestos Awareness Day. The day has been officially recognized by U.S. Congress proclamation for the past six years. In recent years, the awareness effort has expanded, and now the first week of April is officially designated as Asbestos Awareness Week. The theme for the awareness week is “Knowledge is stronger than asbestos.”

On March 26, the ADAO praised the U.S. Senate for passage of the sixth annual resolution establishing National Asbestos Awareness Week. Senate Resolution 427 also urges the Surgeon General to warn and educate Americans about the severe hazards of asbestos exposure.

The ADAO is the largest organization in the United States serving as the voice of asbestos victims, and lobbies for the complete ban of asbestos and asbestos-containing products in the U.S. Asbestos exposure is linked to the development of a number of diseases, including asbestosis, a severe scarring of the lungs; and mesothelioma, a deadly cancer that affects the lining of the lungs and chest, abdomen or the heart. According to statistics compiled by ADAO, in the next decade it is estimated that 100,000 workers around the world will die of an asbestos-related disease. This equals 30 deaths each day.

ADAO co-founder and CEO Linda Reinstein said, “We are grateful to the U.S. Senate for unanimously passing S. Res. 427 that will increase public awareness about asbestos, a known human carcinogen. For the past six years, ADAO has seen that a week of awareness enables agencies, institutions and organizations to promote regulatory compliance and enforcement. Americans deserve and want to know how to prevent asbestos in their homes or in the workplace.”

Asbestos Awareness Week 2010 will be held April 1-7. Visit ADAO online for more information about asbestos and its commercial use; how to prevent exposure in homes, schools and workplaces; early warning symptoms and medical treatment options; and to find out more about why asbestos is still not a banned product in the U.S. and how it is used in common household products.

“For every life lost to asbestos, a shattered family is left behind.” This is the motto and the message of the Asbestos Disease Awareness Organization (ADAO) co-founder Linda Reinstein. Linda, who now serves as ADAO’s executive director, became an activist on behalf of the victims of asbestos disease in 2003, when her husband Alan was diagnosed with mesothelioma. He passed away in May 2006.

The Asbestos Disease Awareness Organization, which Linda established in 2004 along with co-founder Doug Larkin,  is a non-profit organization dedicated to serving as the voice for all asbestos victims. Its mission includes education, outreach, networking for asbestos victims, and especially working to accomplish a complete ban of asbestos in the United States. ADAO has gotten a U.S. Senate resolution to officially declare April 1 as Asbestos Awareness Day, and hosts an annual Asbestos Awareness Day Conference to increase awareness and help prevent future exposure.

This year, the Acting Surgeon General Steven K. Galson supported National Asbestos Awareness Week, the first week of April, and issued a statement about the deadly health hazard posed by asbestos.

Since co-founding ADAO, Linda has globally united countless individuals and families who have been affected by asbestos related diseases, including mesothelioma and asbestosis. She also has worked to produce awareness materials including a slide show called “Asbestos Kills,” and other educational materials including an internationally distributed online book, “Reflections,” which features articles from renowned global experts.

Last week, the ADAO launched a new resource center page on its web site, and issued a call to action for those of us in the mesothelioma community to push for a complete ban on asbestos in the United States by contacting our Congressional representatives.

There is an easy way to do it – just visit www.banasbestos.us and click on the link that says “Write Your Congressman,” which is on the home page. This will take you to a form you can fill out, and it will automatically send the message to your Congressional delegates. Remember, YOU shoud be THEIR voice on Capitol Hill!

“I need them to feel our pain,” Reinstein said. “Asbestos victims – patients, families, caregivers -  are turning their anger to action, across the nation, working for the difference we can make, together.”

Organizations dedicated to raising awareness about the dangers of asbestos and providing a voice for people with mesothelioma are joining in today’s recognition of “Rare Disease Day.” Mesothelioma is a rare form of cancer related to asbestos exposure. It usually affects the lining of the lungs (pleural mesothelioma) or abdomen (peritoneal mesothelioma), but may also sometimes affect the heart (pericardial mesothelioma). Rare Disease Day is a program of the National Organization for Rare Disorders (NORD).

According to its website, NORD is “dedicated to helping the nearly 30 million American with rare diseases, and the organizations that serve them, through programs of education, advocacy, research and patient services.” Among the statistics available on the NORD website is information that in the U.S. a disease is considered “rare” if it is believed to affect less than 200,000 Americans. There are approximately 6,800 “rare” diseases cataloged by the National Institutes of Health. NORD offers a searchable database or rare diseases to help people who may be looking for answers.

Rare Disease Day was established in Europe in 2008 by NORD’s European partner, EURORDIS, and is celebrated worldwide each year on the last day of February. The theme for Rare Disease Day 2012 is Solidarity, “reaffirming the idea that people affected by rare diseases are ‘Rare But Strong Together,’” according to NORD. More information is available at the international Rare Disease Day website, www.rarediseaseday.org.

Among those organizations supporting Rare Disease Day is the Asbestos Disease Awareness Organization (ADAO), which advocates for the eradication of asbestos, and represents patients and families affected by mesothelioma and other asbestos-related diseases.

In a statement, Linda Reinstein, ADAO President and Co-Founder, says, “Tragically, mesothelioma, a cancer caused from asbestos, claims the lives of more than 3,000 Americans every year so, while rare, it is a very meaningful disease for those who are affected.”

The ADAO is encouraging those touched by mesothelioma and other asbestos-related diseases to participate in Rare Disease Day by uploading a “Raise your hands” themed photo on the official website. Participants will have an opportunity to share where in the world the photo was taken, and a personal message about the rare disease that has affected their life. ADAO also is promoting awareness on its Facebook page and to its followers on Twitter (@Linda_ADAO).

The Mesothelioma Applied Research Foundation (Meso Foundation) also is supporting Rare Disease Day. You can visit the organization’s Facebook group for more information about their activities and to find out more about how to get involved.

The Rare Disease Day logo is a non-commercial symbol of global partnership in the search for ways of improving the lives of those affected by rare diseases.