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8,000 People Join the Team Sarcoma Initiative to Fight a Rare Cancer

From its humble beginnings in 2003, when seven people who called themselves "Team Sarcoma" biked 200 miles in Louisiana, the Team Sarcoma Initiative has become an international movement. More than 8,000 people worldwide participated in this year's Initiative, surpassing the 3,400 who participated last year. Events in 14 countries were hosted by individuals, advocacy groups and medical centers seeking to raise awareness of sarcoma, a cancer that affects hundreds of thousands of people worldwide.

Ossining, NY (PRWEB) August 4, 2008 -- From its humble beginnings in 2003, when seven people who called themselves "Team Sarcoma" biked 200 miles in Louisiana, the Team Sarcoma Initiative has become an international movement.

More than 8,000 people worldwide participated in this year's Initiative, surpassing the 3,400 who participated last year. Events in 14 countries were hosted by individuals, advocacy groups and medical centers seeking to raise awareness of sarcoma, a cancer that affects hundreds of thousands of people worldwide.

Carol Anuszewski of Thorofare, NJ, speaks for many Team Sarcoma participants when she says, "This is our inspiration: To see that those who suffer now and in the future get a chance at survival."

Sarcoma is a cancer of the connective tissues, such as nerves, muscles and bones. Sarcomas account for 15-20% of childhood cancers and about 1% of adult cancers. They are often misdiagnosed, and many sarcomas resist current treatments.

The Team Sarcoma Initiative is an internationally coordinated set of events to raise awareness of sarcoma and raise funds to support sarcoma research, clinical trials, and patient and family services. Its mantra is "Sarcoma Knows No Borders," because sarcomas can occur anywhere in the body and can affect anyone in the world.

Bruce and Beverly Shriver of Ossining, NY, coordinators of the global effort, said, "We believe the phenomenal growth in the Team Sarcoma Initiative in the last few years is indicative of the pent up need for individuals and families who have been affected by this disease to interact with each other and their doctors and nurses in a setting other than the traditional hospital setting."

Groups of all sizes joined in a variety of activities during International Sarcoma Awareness Week, July 12-20. Pictures and stories have been pouring in to the Shrivers ever since.

"We hear stories of amazing resiliency in the face of adversity, of incredible courage when faced with treatments that are not stopping the growth of tumors, of people who truly inspire us with the way they carry on with their lives in spite of the aftermath of numerous surgeries and extensive treatments. These stories tug at your heart. When you hear them, you know that you must do something to make more people aware of this rare cancer and to support research to find a cure for it," the Shrivers said.

The following are highlights from just a few of this year's Team Sarcoma events.

Lori Brasic's son, Logan, is in treatment for osteosarcoma, and she organized "Soccer 'Round the Clock" in Jackson, MI. Her words capture the poignancy of the event: "Battles fought on the soccer field carried a special meaning that night. Logan remained near the sidelines from dusk till dawn without rest. From the sidelines he cheered on the players, calling out encouragement. As every player took the field during Soccer 'Round the Clock, they were humbled by a spirited young man yelling and smiling from the sidelines, balancing on his forearm crutches, the left leg of his shorts blowing empty in the breeze. Everyone there was touched and everyone learned about 'The Forgotten Cancer.'"

John Glenny lost his 16-year-old son, Ryan, to Ewing's sarcoma in December. He felt a deep need to do something in Ryan's memory to promote sarcoma awareness and raise research funds, so he planned two events in Boone, NC, during International Sarcoma Awareness Week. "My initial hopes were a handful of Ryan's friends participating in the "Grind" (a skating competition) and possibly 40-50 friends and family in the run. As it turned out, we had 35 skaters from as far away as Atlanta, GA, and almost 100 runners. Hundreds of people in the area learned about sarcoma for the first time."

Rhonda Williams of Baton Rouge, LA, wanted to increase awareness in her state as well. Though the grueling treatment for synovial sarcoma kept her from planning an event, she decided to send letters to her friends and family asking for $5 donations. She raised more than $6,000 for sarcoma research. "I am so delighted with this amount, as I never thought in my wildest dreams that this little letter writing campaign would generate such a tremendous response. I'm receiving so many notes from people thanking me for helping to bring sarcoma awareness to the people of this state."

The Team Sarcoma Initiative has an international scope, and about half of the participants were involved in events outside of the United States. In Mexico City, more than 1,900 people joined in the "Sarcoma Knows No Borders Race and Walk" on July 20. One by one, survivors crossed the finished line: a child using crutches, another child wearing a mask to spare his immune system, and an amputee waving his arms in victory.

In China, physicians and nurses at TianJin Cancer Hospital held seminars and offered free consultations in person and online. More than 600 people were reached during the week, many in outlying areas who needed information and assistance.

Medical centers around the world participated in the Team Sarcoma Initiative. Dr. David Malkin of the Hospital for Sick Children in Toronto, Canada, said, "This is a remarkable coming together of institutions focused on a common goal - to contribute to global knowledge of the sarcoma problem with an ultimate mission to eradicate this disease. The Team Sarcoma events provide an opportunity to collaborate more effectively with other institutions working on the same problem, by highlighting the need for teamwork."

Dr. Piotr Rutkowski of Poland's Comprehensive Cancer Center added: "Especially important is the fact that this is the patients' initiative and the number of participants is increasing. It means that this problem is recognized by more people and it provides the chance for improvement of sarcoma treatment."

Ellen Johnson's father is an angiosarcoma patient. She was one of 26 women who knitted children's chemo caps for 24 hours straight in Tuscaloosa, AL. She said, "The most moving aspect of the Knit-A-Thon was the response I got from total strangers. We advertised our event in the local newspaper and had several participants whom we'd never met before. This event has the potential to grow so much - in fact, I've already started planning for next year!"

Others are planning for next year as well. The 2009 International Sarcoma Awareness Week has been scheduled for July 18-26, and 40 teams have already committed to the effort. Supporters are invited to join in by planning or attending a 2009 Team Sarcoma event.

To learn more about Team Sarcoma and to read reports and view photographs from more than 70 events, visit:

About the Team Sarcoma Initiative: The global Team Sarcoma Initiative is coordinated by the Liddy Shriver Sarcoma Initiative, an all-volunteer organization dedicated to improving the quality of life for people dealing with sarcoma. The Liddy Shriver Sarcoma Initiative publishes peer-reviewed articles in the Electronic Sarcoma Update Newsletter; provides comprehensive, sarcoma-specific clinical trial information at; and has awarded and co-funded $762,000 in peer-reviewed research grants to date.

Bruce Shriver

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