Sarcoma Alliance Tries Again for Congressional Awareness Month

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A resolution supporting July as Sarcoma Awareness Month died with the old Congress, but Rep. Kathy Castor, D-FL, has reintroduced it.

This week U.S. Rep. Kathy Castor of Tampa introduced House Resolution 78, expressing support for July as Sarcoma Awareness Month. "Just in time for Rare Diease Day, the last day in February," said her constituent Suzie Siegel, a board member of the Sarcoma Alliance.

"I'm very honored and humbled to represent my community," Nancy Bobick of Carlsbad, Calif., wrote on her CaringBridge Journal. She had gotten a scholarship to go to Washington, D.C., this week. "Just think I was so sick six months ago, and here I am, talking to Congress."

In 2007, advocates for sarcoma nonprofits agreed on July at a meeting of the Connective Tissue Oncology Society (CTOS) in Seattle, said Siegel, from her hospital bed after surgery. "But we need to work together more to see this become a reality."

Dr. George Demetri, director of the Center for Sarcoma and Bone Oncology at the Dana-Farber Cancer Institute in Boston, bemoaned the “intense fractionality” of sarcoma nonprofits at the CTOS conference in Prague this fall. He discussed how sarcoma oncologists have come together to do better basic research as well as clinical trials.

Each year since 2006, the Alliance updates its Directory of Sarcoma Patient Advocacy Organizations, Siegel said, and each year brings more. "I hope we can use this issue to rally together.

"Many patients -- and doctors -- do not know about the resources available to people with this rare cancer of connective tissue."

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