Patients, Survivors, and Caregivers Worldwide Band Together to Fight a Rare Cancer

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Thousands of cancer patients, survivors, and caregivers will unite from July 12th-20th to increase public awareness of a rare cancer called sarcoma. They will wear wristbands that proclaim "Sarcoma Knows No Borders" as they participate in more than 65 events in 14 countries and 22 states. Each person who participates in these events has a story, and they are all a part of the international Team Sarcoma Initiative.

As of today, I have collected $3,070 for the Sarcoma Initiative! I'm receiving so many notes from people thanking me for helping to bring sarcoma awareness to the people of this state.

Thousands of cancer patients, survivors, and caregivers will unite from July 12th-20th to increase public awareness of a rare cancer called sarcoma. They will wear wristbands that proclaim "Sarcoma Knows No Borders" as they participate in more than 65 events in 14 countries and 22 states. Each person who participates in these events has a story, and they are all a part of the international Team Sarcoma Initiative.

Jeff and Nancy Weber lost their 24-year-old daughter, Annie, to Ewing's sarcoma. They speak the message of the Team Sarcoma Initiative: "We cannot cure a disease that no one knows about. Team Sarcoma will raise 5,000 voices in unison saying, "We have had enough of this disease! We want it gone and we will not let any lives pass without a fight! We will not just sit idle while our loved ones are ripped out of our lives! We will find a cure!"

For those who have lost loved-ones to sarcoma, participation in the Team Sarcoma Initiative can be a way to deal with loss. Truus van der Speck lost her son, Paul, to Ewing's sarcoma when he was 18. She explains: "This will be my third year of participation in the main event and my first year of organizing 'my own' Team Sarcoma event, a bridge drive in Leiden (The Netherlands). I can proudly announce we'll have more than 350 people involved. Every dime I make fills me with pride, and this pride fills a bit of the hole in me left behind by Paul's premature passing."

For patients and survivors, joining in Team Sarcoma provides a way to use difficult experiences for good. Mary Sorens, an osteosarcoma survivor, will travel with the "core" Team Sarcoma, and she is helping to plan an event at Roswell Park Cancer Institute in Buffalo, New York. She says, "I have lost dear friends to this disease. Most of them were young and full of hope that they would survive to marry, raise families or just enjoy health again. I firmly believe that research will lead to better treatments for sarcomas. I am involved with Team Sarcoma in the hopes of making that research happen now, because people are dying now."

Rhonda Williams of Louisiana, while in treatment for synovial sarcoma, is sending letters to her family and friends as part of the Team Sarcoma Initiative. She enthusiastically shares, "As of today, I have collected $3,070 for the Sarcoma Initiative! I'm receiving so many notes from people thanking me for helping to bring sarcoma awareness to the people of this state."

Matthew Siegle of Montana is the Founder of "Fishin' for the Cure" and the host of a Team Sarcoma event on July 12. He has been battling osteosarcoma for more than five years. Siegle declares: "It is our dream, to one day have a world where no child has to suffer from the painstaking battle of sarcoma."

Team Sarcoma events provide much-needed support and information for patients and their families. Mimi Olson's grandchild, Carly, was diagnosed with mesenchymal chondrosarcoma at the age of 4. Mimi explains: "In 2006, I participated in my first Team Sarcoma event. Meeting others who had traveled the same road as our family, folks who had faced the same uncertainties and fears, was a great help to us."

Suzanne Ash Kurtz is a leiomyosarcoma survivor and is the Executive Director of the Leiomyosarcoma Direct Research Foundation in Tulsa, Oklahoma. Kurtz declares: "We at Leiomyosarcoma Direct Research Foundation are honored and proud to participate in the 2008 Team Sarcoma Initiative again this year. When I was first diagnosed with sarcoma, almost five years ago, I did not even understand that sarcoma was a form of cancer. We all know about cancer, but sarcoma is so rare that when one is diagnosed with this cancer…we feel lost and alone and in an unfamiliar territory."

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.

This year, 29 medical centers, 22 advocacy groups, and 24 patient and family groups are involved in the Team Sarcoma Initiative which has become an International Sarcoma Awareness Week. The 2008 Initiative will be the largest ever to raise awareness of sarcoma, a cancer that affects hundreds of thousands of people worldwide.

The Initiative is already making an impact. Dr. Sebastian Bauer, Head of the Sarcoma Program at the West German Cancer Center, explains: "The Team Sarcoma Initiative has triggered our sarcoma team to improve accessibility and visibility for our sarcoma program. Our Team Sarcoma events have shown the need for and benefit of human interaction outside the clinical routine. Being part of a 'movement' has also helped to emphasize and strengthen combined efforts and better education in a rare but potentially deadly disease like sarcoma."

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. Meg Thorburn, a leiomyosarcoma survivor from Canada says, "As a professor of epidemiology, I found it hugely ironic to be diagnosed with a condition as rare as leiomyosarcoma. For years, I had been teaching graduate courses in evidence-based medicine and medical decision-making, and now I was faced with having to make repeated and rapid life-and-death decisions about a disease for which very little evidence existed. The Liddy Shriver Sarcoma Initiative is an incredible resource for sarcoma patients such as myself  a treasure trove of information, a funder of cutting-edge sarcoma research, and a network of strength and support. The Team Sarcoma Initiative provides us the opportunity to be part of this fantastic effort, in celebration and hope."

To learn more about the Team Sarcoma Initiative, view a full listing of events, and get involved, visit: http://www.team-sarcoma.net.

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Bruce Shriver

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