International Sarcoma Awareness Week 2009

l Press Releases

More and more people are getting involved in a small volunteer movement called the Team Sarcoma Initiative. Although the movement began quietly with just seven cyclists in 2003, it will be heard around the world this year as more than 10,000 people participate in events during International Sarcoma Awareness Week: July 18-26.

The Team Sarcoma Initiative is a coordinated set of events to increase awareness of sarcoma, a rare and deadly cancer that affects hundreds of thousands of people worldwide, and to raise funds to support sarcoma research, clinical trials, and patient and family services. The Initiative is accomplished by hundreds of people from 84 medical centers, advocacy groups, and patient and family groups working to host events in 14 countries, 27 states and the District of Columbia.

Dr. Lor Randall will participate in Huntsman Cancer Institute’s event near Park City, Utah, on July 25. He describes Team Sarcoma as: “a wonderful program that brings attention and support to a class of deadly and pestiferous tumors that do not garner enough attention from cancer investigators internationally.”

Sarcoma is a cancer of the connective tissues, such as nerves, muscles and bones. It can arise anywhere in the body and is frequently hidden deep in the limbs. Sarcomas account for 15-20% of childhood cancer diagnoses and about 1% of adult cancer diagnoses, and they are often misdiagnosed. Many sarcomas resist current treatments.

Dr. Dina Lev will attend an event co-hosted by M.D. Anderson Cancer Center and the Amschwand Sarcoma Cancer Foundation in Houston, Texas. She explains Team Sarcoma’s appeal to medical professionals: “Taking a day off from our intensive schedules and joining others with a strong commitment and passion to make progress in the management and research of sarcoma is highly rewarding.”

Team Sarcoma events are large and small, athletic and educational, exciting and inspiring. At each event, there is a feeling of solidarity with other teams around the world, and every participant wears a blue “Sarcoma Knows No Borders” bracelet. Dr. Lev adds, “With the increasing growth of the TSI, we all feel part of a larger world wide community.”

Teams around the world have planned more than ten events in Europe and five events in Australia, as well as events in Canada, China, Malaysia, and Mexico. On July 19, as many as 2,000 people are expected to race into the Olympic Stadium in Mexico City as a part of the “Sarcoma Knows No Borders” Race and Walk.

The 2009 Team Sarcoma Initiative includes a core team that will be biking and walking along the Chesapeake and Ohio Canal towpath from Cumberland, Maryland to Washington, DC. Patients, survivors and loved-ones will travel from ten countries to join the core team, and they have experienced fourteen subtypes of sarcoma.

Donna Lee Owens of Chicago, Illinois, biked with the core team in the past and will join them again this year. She says, “Being in the presence of this group of people who are biking to raise the awareness of sarcoma is a very spiritual and rewarding experience. I seldom bike at home, so I do know that I am exhilarated in their presence because I manage to bike the distance each day.”

The hope of the Team Sarcoma Initiative is that increased awareness and research funding will improve the diagnosis, treatment, and support offered to everyone who is touched by sarcoma, the “forgotten cancer.”

Lisa Exceen and Shelly Reyland both lost their mothers to sarcoma, and they have organized an event in Dana Point, California. They express a common sentiment among Team Sarcoma Participants: “Much of the time, people involved with this disease feel helpless and alone, fighting for information as well as answers. People dealing with the disease right now need not feel alone. Together working toward a goal, we will make a difference.”
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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 SarcomaHelp.org; and has raised more than one million dollars for peer-reviewed research grants.