SARCOMA: THE FORGOTTEN CANCER

I had never heard of sarcoma until 2002 when my son, Adam, called from California and told me and my wife that he had a large tumor in his thigh, which had been diagnosed as a sarcoma. I was stunned. What was a sarcoma, and why had I never heard of it?

It turned out there was good reason for not having heard of it. At the time there was very little known about this insidious disease. I did some research and found out that sarcoma is a rare cancer of the connective tissues and can appear in almost any part of the body. A further complicating factor is that there are close to 100 subtypes of sarcoma. Although it occurs in about only one percent of the general population, approximately 15% of childhood cancers are sarcomas. The disease often goes undetected and/or was misdiagnosed, and there was little or no research being done to find a cure. Moreover, its mortality rate was approximately 50%. We tried to find a sarcoma organization which might give us support and more information about the nature of the disease, but there was none. My heart sank.

Thankfully, Adam was living in LA where some of the top physicians in the sarcoma field practice so he was diagnosed and treated by the some of the best. Still, it was a year of living hell as he underwent surgery, chemo and radiation. Fortunately, he survived, and 10 years later he is cancer free.

After his treatment was completed in 2003, my wife, Addie, and I were grateful and also mindful of the sense of helpless and isolation we felt during Adam’s ordeal. As a result, we wanted to spread public awareness about sarcoma and also wanted to encourage research in the field. At that time we discovered and joined forces with a young organization that had the same aims as we did, the Sarcoma Foundation of America (SFA).

Shortly after we joined, Addie and I, with the help of family and friends initiated the first annual SFA gala benefit which helped put the organization on a firm financial basis. Thereafter, we continued to grow. In fact, in the few short years since that time, the SFA has become a national organization, headed by Dr. Mark Thornton, with a distinguished Medical Advisory Board and chapters in about 20 states. Furthermore, we have become the leading private organization funding sarcoma research, investing over $3.6 million in research. This includes 65 SFA sarcoma research grants, six American Society of Clinical Oncologists (ASCO) Young Investigator Awards, two ASCO Advanced Clinical Research Awards, and one ASCO Career Development Award. In addition, we have created a National Sarcoma Patient Registry with an enrollment well over 1400 patients. The information in this registry is being used to advance sarcoma research nationwide.

The advocacy efforts of the SFA have resulted in focused research programs on sarcoma funding by the National Cancer Institute as well as new investment by the biopharmaceutical industry in sarcoma clinical research. These efforts ensure that sarcoma, though relatively rare, receives attention from government and other entities that have the interest and ability to support scientific research into Sarcoma. We’ve also petitioned the FDA to codify and streamline its rules to expedite the approval of drugs aimed at treating rare cancers, such as sarcoma.

Recently we have partnered with the National Disease Research Interchange (NDRI) to facilitate the collection of sarcoma tissue samples. This partnership will allow researchers to obtain the rare tissue samples that are so vital to further their efforts towards finding a cure.

In continuing our efforts on behalf of sarcoma patients, the SFA advocated for the approval of drugs at FDA Oncology Drug Advisory Meetings and was instrumental in the positive vote for the drug, Votrient, which is the first new drug introduced for the treatment of sarcoma in 30 years.

This year, the SFA is having its 10th annual Gala at the Grand Hyatt New York Hotel. In the past we have had events at the Museum of Natural History, Capitale and Cipriani’s, among others. Guest appearances have included Bob Woodruff, Rufus and Martha Wainwright, Dan Ackroyd, John Pizzarelli and Jessica Molesky, and Diane Sawyer. One of the honorary chairpersons of this year’s gala is NY Giant, Mark Herzlich, a Ewings Sarcoma survivor and former recipient of our Sarcoma Courage Award.

Additionally, as part of our outreach to sarcoma patients and their families, each year the day before of our annual gala, we hold an educational conference entitled Ask the Experts: Advances in Sarcoma Treatment and Research with speakers who are the leading researchers and physicians in the sarcoma field.

For more information, and to offer your support, please go to www.curesarcoma.org.