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They Focus on ‘Orphan’ Disease

Malignant mesothelioma appears in 3,000 cases annually

The Mesothelioma Foundation staff in front of their historic office building (c. 1808) on King Street in Old Town. From left are Mary Hesdorffer, Kristin Siebeneicher, Melinda Kotzian, Jessica Barker, Kathy Wiedemer and Erin Maas.

The Mesothelioma Foundation staff in front of their historic office building (c. 1808) on King Street in Old Town. From left are Mary Hesdorffer, Kristin Siebeneicher, Melinda Kotzian, Jessica Barker, Kathy Wiedemer and Erin Maas.

Malignant mesothelioma is a tumor found in the lining of the lungs, heart or stomach. Exposure to asbestos causes mesothelioma. It lies dormant and asymptomatic within people for as long as 50 years before it erupts. Once diagnosed — 3,000 cases annually — the disease is always fatal.

In 2010, the National Cancer Institute invested $7 million in mesothelioma research, compared to $632 million for breast cancer, $270 million for colorectal and $44 million for kidney cancers. The world abounds with “orphan” diseases; mesothelioma is one of them.

Alexandria resident Kathy Wiedemer is trying to halt the inexorable tide of mesothelioma suffering. She is the executive director of the Mesothelioma Applied Research Foundation, which has its headquarters at 1317 King St. in Old Town.

“The foundation is the primary national nonprofit organization aimed at helping patients and funding research,” said Wiedemer. “Prior to 2004, there was no approved treatment for mesothelioma, but we have helped develop two drugs that briefly extend survival time beyond the usual eight to 12 months. We are urgently seeking more therapies.”

Surgery can aid about 15 percent of patients, but even those victims will die within three years.

The foundation, created only 11 years ago, uses a board of experts to screen and select proposals for peer-reviewed research on the disease and possible treatments. Since 2000, it has awarded nearly $8 million in grants to support innovative and promising studies around the world.

Further, the foundation offers one-on-one medical consultations to patients and their families, coordinates support groups and sponsors an annual mesothelioma symposium. The third major foundation initiative is advocacy for mesothelioma within the federal government. Because of the long history of asbestos use on naval ships, the foundation convinced the U.S. Department of Defense to help underwrite research.

After joining the foundation two years ago, Wiedemer organized the move of the foundation from Santa Barbara, Calif. to Alexandria. “Our board of directors wanted us to be closer to the National Institutes of Health and federal sources of research funding,” she said.

Wiedemer is veteran development director and chief executive officer in the nonprofit healthcare field. She has been a senior manager at two hospital foundations in Florida, the Lombardi Comprehensive Cancer Center at Georgetown University, the National Parkinson Foundation and American Society of Clinical Oncology Cancer Foundation. She first lived in Alexandria in 1998.

“My two sons attended Georgetown University, and when my husband and I visited them we fell in love with Old Town,” she said. She and her husband Peter, a sales executive, own a home on Oronoco Street.

The foundation sponsors the annual International Symposium on Malignant Mesothelioma, with this year’s meeting scheduled for July 12-13, 2012 in Washington, D.C. The symposium is a three-day conference for the entire mesothelioma community, including patients, their families, caregivers and advocates.

For more information on mesothelioma and the Mesothelioma Applied Research Foundation, visit www.curemeso.org. Bear in mind that Googling “mesothelioma” in search of medical information and resources will also yield dozens of websites associated with lawyers offering advice to victims.

“We really need volunteers to help with event planning and coordination, letter-writing campaigns and fundraising,” Wiedemer said. “There is a ‘Volunteer’ tab on our website’s home page.”

By Michael K. Bohn

Gazette Packet