Biking, Running, Walking and Hiking for a Cure around the Globe

It all begins in Denmark
In early July, in a small village in Denmark, somewhere between 50-60 people will mount their bicycles and begin the Team Sarcoma 2006 Bike Tour, TS 2006. They are biking through some truly idyllic places in Denmark, starting out in Billund, the home of Legoland, on the Danish peninsula Jutland and ending up in Copenhagen seven days later. They are biking in TS 2006 as part of an internationally coordinated event to raise public awareness of “sarcoma” and to raise funds for sarcoma research.

What is sarcoma?
Sarcoma is a cancer of the connective tissues, such as nerves, muscles, joints, bone, or blood vessels. It can arise anywhere in the body and is frequently hidden deep in the limbs. Although it is relatively rare in adults, less that 1% of adult cancers are sarcomas, it is more frequent in children ― between 15-20% of children’s cancers are sarcomas. Hundreds of thousands of patients and their families are struggling with sarcoma world-wide. Bruce and Beverly Shriver, who organized the bike tour, summarize this state of affairs by saying, "Sarcoma knows no borders. It can occur anywhere in the body; it doesn't discriminate on age, gender, race or creed and occurs in countries all over the world. Yet, it is the Forgotten Cancer. Too few researchers focus on sarcoma.”

An International Event
Denmark is the epicenter of this international project. People are coming to Denmark to join in the bike tour from Germany, Ireland, the Netherlands, New Zealand, Portugal and Spain and from several states within the United States. They will be joined by over 500 people who, in a show of solidarity with the TS 2006 goals, have formed “local Team Sarcomas” in many cities worldwide to also raise awareness of sarcoma within their own country. As part of this effort, Team Sarcomas have been formed at various cancer centers that are acknowledged to be among the finest such centers in the world. Each of these teams involves oncologists, nurses, and sarcoma patients, caregivers, and survivors, families and friends who are joining together to support the activity. There are Team Sarcomas at Dana-Farber Cancer Institute in Massachusetts, Fox Chase Cancer Center in Pennsylvania, Huntsman Cancer Center in Utah, Moffitt Cancer and Research Institute in Florida and at the West German Cancer Center in Essen.

Dr. John Goldberg is a sarcoma oncologist at Dana-Farber Cancer Institute in Boston. He and his wife Hillary organized the Team Sarcoma/DFCI. Dr. Goldberg said, "It was easy for my wife and I to agree to participate in the Team Sarcoma 2006 Bike Tour, as we have seen first hand how terrible this type of cancer is for patients and families and how badly new treatments are needed. The Liddy Shriver Sarcoma Initiative helps to make sure that research on seemingly rare diseases moves forward and does not get stuck for a lack of funding of innovative investigators. If you look at sarcoma as a global disease, you understand that a global effort is needed to fight it - while most forms of sarcoma are not common, they affect all peoples of the world and thus take an enormous toll on humanity in aggregate. The only way to study such illnesses is to enlarge the fight against them. The sarcoma advocacy community, as exemplified by the Liddy Shriver Sarcoma Initiative, builds upon the courage of those afflicted with sarcoma to make good on their bravery in fighting cancer by making sure new treatments are investigated and new investigators are supported."

Dr. Ole Steen Nielsen of the University of Aarhus in Denmark and past-president of the Connective Tissue Oncology Society, the international professional society where sarcoma research results are presented, said, "The Team Sarcoma 2006 Bike Tour is a fantastic initiative that hopefully will bring a focus on a rare disease like the sarcomas. Although sarcomas are rare, it is a disease that also hits young people and even children. With the increasing new knowledge and research within sarcomas, it may be a disease with a far better outcome in the future. The bike tour is an important step getting more focus on sarcomas. In Europe and especially in Denmark we are not used to these patient based initiatives and hopefully the Bike tour may also be the start for more similar initiatives in Europe." In a show of support of Team Sarcoma, Dr. Nielsen plans on biking with the tour as they bike into Copenhagen.

Why Denmark and Why a Bike Tour?
The Shrivers, who lived in Aarhus, Denmark for two years in the early 1970s with their four children, Bruce, Mark, Liddy and Matthew have loved Denmark and its people ever since. Their daughter Liddy was diagnosed with Ewing’s sarcoma in 2002. She was an avid cyclist and biking was an integral part of the way in which she approached her cancer. As her disease became increasingly serious, she decided to do some of the things that she had always wanted to do. Among the list of things was going on some multi-day bike tours. After doing a 360 KM (200 mile) bike tour in four days in Louisiana in early 2003, the entire Shriver family ― children and grandchildren― decided to do a bike tour in Denmark in 2003. They were joined by friends and several Danish families. After Liddy passed away in January 2004, they have kept her memory alive by organizing the bike tours to alert others to this disease and to sponsor research. So far the Liddy Shriver Sarcoma Initiative has supported vaccine research at the Dana-Farber Cancer Institute, gene chip research at Stanford University, gene fusion research at the University of Pennsylvania, germ-like mutation research at Baylor College of Medicine, vaccine research at the University of Michigan, and general studies at New York Presbyterian Hospital. “Liddy is an inspiration to everyone who becomes aware of what she accomplished during her 21-month encounter with Ewing's sarcoma,” the Shrivers said.

Team Sarcomas in Japan, Ukraine, Poland, Portugal & more …
It has been wonderful to see how people, who when hearing about our objectives, have pitched in to help. Shriver gave some examples, “We had 26 people who formed a Team Sarcoma/Japan and biked from the Dome Monument in Hiroshima to the Ferry Boat for Miyajima. They were on Japanese TV and had stories in the leading Japanese newspapers about sarcoma and their efforts. We had two Team Sarcomas in Ukraine who were in the Ukrainian newspapers. We had students in Poland biking for us. There were 16 boy scouts and a scout leader that formed a Team Sarcoma/Portugal. We had 17 triathlon athletes in New York bike hundreds of miles up and down hills. All of them did this to help raise awareness of sarcoma and to help fund research.” So far the Liddy Shriver Sarcoma Initiative has raised over 150,000 € ($190,000) to support research. This year, in an effort to reach out to other sarcoma advocacy groups, they have invited many of them to set up their own local Team Sarcomas to be an integral part of this effort. Several advocacy groups are in the process of doing this.

Where do things stand?
Sarcomas are dangerous because they are often misdiagnosed. Sometimes they are thought to be sports injuries. When they are diagnosed, they are often large and difficult to cure. Furthermore, many sarcomas totally resist current treatments. Whenever possible, sarcoma patients have surgery to remove the cancer and the surgery is often combined with chemotherapy and/or radiation. The Danish Cancer Society is supportive of TS 2006 and encourages participation in it. Everyone involved in the Team Sarcoma project believes there is strength in numbers, that the numerous voices of the many Team Sarcomas can be heard, and that they can help fund research that may be part of finding a cure for sarcoma. They would welcome you to “Bike for a Cure” through the delightful, idyllic Danish countryside with them. You can contact them at shriver@genesis2.com. You can learn more about sarcoma at their website www.sarcomahelp.org.