SFA Update

An update from the Sarcoma Foundation of America:

Research, Awareness, & Advocacy

Matthew Alsante

Executive Director

Sarcoma Foundation of America

The Sarcoma Foundation of America (SFA) advocates for new and better therapies to treat patients with sarcoma. Since its inception in 2000, the SFA has been working to fund early stage and translational research focused on discovering new pathways to treat all types of sarcomas. In just a few short years, we have awarded 23 research grants and two American Society of Clinical Oncologists (ASCO) Young Investigator awards.

Advanced Cancer Research Award

We are in the process of supporting an ASCO Advanced Clinical Research Award (ACRA) valued at $500,000 over a three-year period. We are especially proud of the ACRA grant, which was made possible through partnership with the Capon Family. We believe that by privately funding a long-term research grant of this magnitude, we can attract high caliber researchers who are interested in and capable of pursuing a significant sarcoma research project. It is by supporting the work of dedicated scientific researchers that we will eventually find a cure for sarcoma. It also demonstrates to those of us who are part of the sarcoma community that the dedication of a small number of people united for a cause can truly make a difference!

The ASCO Foundation, Sarcoma Foundation of America, and Capon Family 2008 Advanced Cancer Research Award in Sarcoma application will be available on October 31, 2007. Please Visit their grants webpage for a complete listing of award terms and eligibility criteria, and to access the online application.

Sarcoma Patient Registry

Due to the fractured nature of the US healthcare system, there is currently no universal database that provides access to information on sarcoma patients. This makes it challenging for public or private researchers to gather enough data to fully study genetic pathways and identify therapeutic candidates for all but the most common sarcoma sub-types. The SFA hopes to help address this issue by creating a comprehensive Sarcoma Patient Registry that will track the progress of patients with sarcomas.

Currently in a trial phase, the Registry is beginning to collect epidemiological data from existing state registries. By combining the data from other registries around the country and gathering new data from current and future patients, the SFA’s Sarcoma Patient Registry is designed to be a powerful source of information for scientists on the hunt for markers, genetic pathways and effective therapies for sarcomas. Eventually, the Registry will become a repository of data for all sarcoma sub-types, capturing information on individual patient diagnosis, treatment and outcomes. Its overarching goal is to be a virtual historical control group that replaces the need for control cells in clinical trials on sarcomas, and thereby encouraging increased interest in pursuing these costly trials.

Expanding through State Chapters

Another exciting advance on behalf of sarcoma advocacy is the revitalization of SFA State Chapters. In April of this year, we set out to increase the scope and reach of the SFA by further developing our reach at the state level. Just a few months later, we have increased our active Chapters from 6 to 25. State Chapters are led by dedicated Chapter Leaders, community-minded individuals who have volunteered their time to educate local communities about sarcoma, create awareness about the disease, and raise funds for research.

The state-level grassroots network is an integral component to the SFA’s mission. By increasing awareness of sarcoma and the devastating effect of the disease on the children and adults diagnosed with it, we hope to create the momentum to affect public policy in a way that results in increased funding for research into the disease. SFA’s passionate and energetic Chapter Leaders are essential to the realization of finding a cure in our time!

Are you interested in volunteering for your State Chapter? Please contact us.

Citizens Petition

The third initiative is the recent request to the U.S. Food and Drug Administration to develop a so-called “Guidance Document” for the pharmaceutical industry that would address the unique issues in drug development of new agents for rare cancers such as sarcoma. If we are successful in our push for this document, it could lead to an increase in industry interest in taking the commercial risk of developing a new drug for rare cancers such as sarcoma and its 100 subtypes.

The Sarcoma Foundation of America is dedicated to finding a cure in our time. It is through a sense of passion, community and working together with other sarcoma advocacy groups that we will reach this goal. To learn more about the SFA, visit our website.