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.
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!