Making a Difference for Patients With Sarcoma

The Sarcoma Foundation of America (SFA), a 501(c)(3) nonprofit charitable organization, advocates for increased research to find new and better therapies with which to treat patients with sarcoma. We raise money to privately fund grants for sarcoma researchers and conduct education and advocacy efforts on behalf of sarcoma patients. The SFA also interacts with public, private for-profit, and private nonprofit entities to educate and raise awareness about the treatment needs of not only sarcoma patients, but also all patients with rare cancers and rare, life-threatening diseases.

Sarcoma is a rare cancer of the connective tissue (bone, muscle, nerve, blood vessel, tendon, fat) with about 14,000 new cases and 6000 deaths each year. At any one time, 50,000 patients and their families are struggling with sarcoma. The disease is particularly rare in adults, comprising just 1% of all adult cancers. However, sarcoma is rather prevalent in children, making up approximately 15% of all childhood cancers. Adding to the difficulties in fostering new drug development, there are 50 validated histologic subtypes of sarcoma, with the potential for the existence of over 100 subtypes. This means that an already rare disease is further broken down into increasingly smaller subsets of patients. Unfortunately, sarcomas are commonly hidden deep in the body, so it is often diagnosed when it has already become too large to expect a hope of being cured.

There is tremendous unmet medical need for sarcoma. Sarcoma is sometimes curable by surgery or by surgery with chemotherapy and/or radiation, but about half the time patients are totally resistant to all of these approaches—thus the extreme need for new therapeutic approaches.

Unfortunately, only one drug has been approved for the treatment of this cancer in the past 30 years in the United States. This approval came in 2012 when the FDA gave full approval to pazopanib for the treatment of soft tissue sarcoma. While this was a remarkable step forward for the treatment of adults with sarcoma, there is still no approved therapy for children with this rare cancer.

To foster innovation in sarcoma research and drug development, the SFA raises funds to support research focused on discovering and developing new and effective therapies to treat and eradicate sarcoma. Since our inception, the SFA has invested more than $5 million in research. We fund cutting-edge research projects that would not initially be funded by the government or pharmaceutical companies. Additionally, the SFA has funded multiple grants through the Conquer Cancer Foundation and has partnered with the Sarcoma Alliance for Research through Collaboration (SARC) to fund a long-term grant that supports increased research into sarcoma.

In addition to our robust research grant program, the SFA has also developed a national sarcoma patient registry. The registry is collection of data on the occurrence, treatment, outcomes, and characteristics of sarcoma. The aim is to help physicians and researchers in every facet of patient care, including conducting research to assess and control the impact of the disease and increasing clinical trial participation. The SFA also coordinates an annual Educational Conference for sarcoma physicians, patients, and families, and offers webinars for continued education in current treatments and potential advances in sarcoma research.

You can learn more about the SFA, including ways that you can get involved and help make a difference for sarcoma patients, at www.curesarcoma.org. You can also visit us on Facebook (www.facebook.com/CureSarcoma) or follow us on Twitter (@curesarcoma).