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The Sarcoma Foundation of America, a Patient Advocacy Group for a Rare Cancer

June 14, 2017
The Sarcoma Foundation of America (SFA) is national cancer research non-profit headquartered in Maryland.  Founded in 2000, the SFA advocates for increased research to find new and better therapies with which to treat patients with sarcoma, a rare cancer of the connective tissue and bone.

Sarcoma is a rare cancer in adults (1% of all adult cancers), but rather prevalent in children (about 20% of all childhood cancers). It is made up of many “subtypes” because it can arise from a variety of tissue structures (nerves, muscles, joints, bone, fat, blood vessels – collectively referred to as the body’s “connective tissues”). There are approximately 14,000 new cases and 6,000 deaths each year in the United States. At any one time, more than 50,000 patients and their families are struggling with sarcoma.

Sarcoma’s are most frequently located in the limbs since this is where the majority of the body’s connective tissue resides. It is not uncommon for these tumors to be hidden deep in the body, so sarcoma is often difficult to diagnose. This can result in larger, more advanced tumors at diagnosis.

In order to pave the way for new and better therapies, with a goal of ultimately finding the cure, the SFA has invested heavily in innovative research. Our aim is to fill the research gap – to pick up the slack and ensure that innovative research is not overlooked due to the lack of funding. Since our inception, the SFA has invested more than $7 million in sarcoma research. We have partnered with other non-profits and research facilities on research projects – including a recent PD-1 clinical trial – but a significant amount of our research funds are given through our annual research grant program. Through that program, we have funded 105 research projects and given grants to 92 different researchers. Forty-six institutions in 17 different states and three different countries have benefited from SFA research dollars. Grants funded by the SFA have contributed to understanding and progress in every category of the process involved with developing a new sarcoma treatment.

Our research grants have not only helped to fund specific scientific projects, but have also helped to encourage the next generation of sarcoma researchers. As federal research dollars become more scarce, it has become more and more difficult for young researchers to find the money to fund their research projects. This is especially true in a rare disease like sarcoma and means that the next big breakthrough could slip through our fingers as researchers leave the field.

In addition to research, the SFA works to increase awareness and advocate on behalf of the sarcoma community. The SFA interacts with public, private for-profit, and private non-profit entities to educate and raise awareness about the treatment needs of sarcoma patients and to advocate for increased research funding.  We have developed an education conference series, bringing patients and caregivers together with leading sarcoma researchers and physicians.  These conferences are an exceptional opportunity for patients to learn about developments in research, clinical trials and treatments, including immunotherapies.  We have also launched the national Race To Cure Sarcoma (RTCS) 5K run/walks that help raise public awareness while raising research funds. Each year the RTCS is growing in numbers of races, participants and impact.

The Sarcoma Foundation of America will be attending this year’s BIO International Convention in the hopes of meeting other organizations that are working to improve patient outcomes of sarcoma patients and other rare diseases.  We are always looking for opportunities to work with other organizations to make the dream of a cure happen as fast as possible.

For more information about the Sarcoma Foundation of America, please visit www.curesarcoma.org or connect with the SFA on social media at https://www.facebook.com/CureSarcoma/ and https://twitter.com/CureSarcoma.