Loving the sarcoma community at CTOS

By Suzie Siegel

Kate Barzan Smith, who is working on her PhD in pharmacology at the University of California-Los Angeles, would love to find new drugs to treat sarcoma.

“I’m fighting as hard as I can,” she told me at the annual meeting of the international Connective Tissue Oncology Society in Chicago last fall. The "meeting" is actually a conference that lasts several days. Last fall was the first time the CTOS meeting was held in conjunction with the annual meeting of the Musculoskeletal Tumor Society. About 800 people who research sarcoma and/or treat patients attended. Officials believe it was the largest conference on sarcoma ever held in the world.

Smith has been researching liposarcoma. “I had never heard about [sarcoma] until I started working on it.”

At the 2009 CTOS meeting in Miami Beach, she met me, Sarcoma Alliance board member Dave Murphy and Executive Director Arthur Beckert. She had never met patient advocates before, especially not ones who also had the disease.

“There’s nothing for you guys, but you’re willing to come to these conferences, and you keep coming." Talking to advocates “changed the way I approached my science. It gave me motivation to work harder. It made me fall in love with the sarcoma community.”

That made my day.

About 20 people representing 11 nonprofit organizations attended CTOS, and there couldn't have been more than 10 of us who also are patients ourselves. A few staff members also went, plus people who lost a loved one to sarcoma, such as Dave. He has attended every CTOS meeting since 2002. I've been to every one in North America since 2004.

Generally, we can't afford the hotel where the meeting is held. Dave looks for a cheap hotel, and I try to mooch off friends. We pay our own registration fees.

We go to hear about the latest research and analyze trends in the field. In addition to formal presentations, we have opportunities for informal chats, and we get to network. Once, for example, I introduced a researcher to another with the same interest, and the younger one was able to get tissue samples from the older one. We see who commands respect in the sarcoma world, and who works well with whom. We try to use this information to help others affected by sarcoma.