The Sarcoma Foundation of America, Inc.

The goals of the Sarcoma Foundation of America fall into three categories: research, education, advocacy.

Goal 1 Research: Research is the heart of SFA. This year, we are embarking on a scientific strategic plan with the goal of increasing our research funding but also funding research in different ways. Reach a total of $20 million in funding over the next five years (an $8 million increase) for translational and innovative research funding focused on discovering and developing new and effective therapies to treat and end sarcoma. Also, foster opportunities for greater collaboration, breaking down research barriers through our research funding and building a pipeline for young investigators.

Goal 2 Education: Research is important to ending sarcoma. But patients must be educated on new research and therapies as well as clinical trials to advance the research from the bench to the clinic. SFA has a goal to enhance our education efforts to increase participation in clinical trials to advance therapies through the drug development pipeline and to empower patients to actively participate in their care.

Goal 3 Advocacy: While we have made progress to raise the awareness about challenges faced by sarcoma patients and have seen increased approvals for sarcoma therapies, there is still more work to be done. SFA will build a community of sarcoma ambassadors to increase public awareness about these challenges and advocate for legislative and regulatory changes that speed the development and delivery of novel innovative therapeutics to the sarcoma patient community. Currently, a coordinated and unified effort does not exist due to the rarity of the disease and no organization like SFA to take the lead on such an effort. Furthermore, many sarcoma patients do not have access to quality healthcare leaving them unable to access the treatment they need if it is available to them. SFA's advocacy will focus on ensuring all sarcoma patients, have access to the care they need and deserve.

Research: Develop a scientific strategic plan that outlines research funding requirements that includes collaborations and information sharing and inclusion of young and diverse investigators and disciplines. Revamp the Medical Advisory Board to broaden representation from sectors, genders, demographics, career stage and area of expertise. We will also increase fundraising collaborations and revenue streams to allow for increased research funding.

Education: Our education strategy includes consistent thought-provoking sessions with esteemed speakers, interactive webinars, advocate/researcher networking at national meetings, briefings on the latest developments in sarcoma research, recorded one-on-one interviews with sarcoma experts, and short resource videos on topics of importance. We will leverage the partnerships with our many stakeholders and partner organizations to leverage expertise and reach. We will also offer educations PSAs recorded in partnership with cancer centers across the country.

Advocacy: SFA has developed a database for capturing information for sarcoma advocates who would like to engage as a sarcoma ambassador. We will engage the Sarcoma Coalition to share information with their networks as well as utilize social media, email, education sessions, partner organizations and institutions to share the message to grow our database of ambassadors. We will also host a focused advocacy campaign during sarcoma awareness month, during rare disease day, childhood cancer awareness day and other important milestones for sarcoma patients. Furthermore, we will develop advocacy campaigns around our priorities for access to healthcare and other issues affecting drug development.

As the leading organization in sarcoma, SFA has built relationships across all sectors involved in our mission to ultimately end sarcoma. We have engaged and worked with and alongside academic institutions, the pharmaceutical industry, governmental organizations, professional membership associations, members of congress, the patient advocate community, local cancer centers, and large donors/funders in our work. We also share information and engage with our global sister organizations to share information and learn about innovative research globally since SFA funds global research.

We will further leverage these relationships and provide opportunities for collaboration through our medical advisory board, research funding requirements, our advocacy efforts, Board of Directors, education offerings and patient network. No other organization in sarcoma has the network or relationships that SFA has built.

We also have built a financial stability that allows us to invest in research and other infrastructure necessary to reach our goals. In 2021 SFA is embarking on an organization and scientific strategic plan and have already engaged these stakeholders in this endeavor. In addition, these stakeholders are already involved in our research, fundraising, advocacy, education, and communication efforts.

As of 2020, we have funded over 173 research projects, 74 research institutions, more than 144 researchers and invested more than $12 million in sarcoma research making us the largest funder of research in the sarcoma community. This year, we will fund just over $1 million in research but we would like to increase that to at least $2 million per year and within five years increase our total funding to at least $20 million in funding.

The SFA serves as the voice for the sarcoma community by educating legislators, federal and state agency officials, health and research communities, and the general public about the need for additional research and new therapies. The SFA advocates for increased research funding for sarcoma both from the public and private sectors and works with government, for-profit and non-profit cancer organizations, and the biopharmaceutical industry to improve the level of awareness, interest, and investment in research for sarcoma. These advocacy efforts have resulted in focused research programs on sarcoma by the National Cancer Institute, as well as new investments by the biopharmaceutical industry. As the leading voice in sarcoma, we will grow our patient community by creating a network of sarcoma ambassadors, currently none exists. We will increase advocacy focusing on access to quality healthcare for sarcoma patients, more therapies moving from the lab to the clinic and raising awareness about this rare disease to decrease the time to diagnosis. We would also like to create a global coalition of sarcoma patient advocacy groups since SFA funds research globally.

An educated and empowered community is key in efforts to bring change to the sarcoma landscape. Education not only aids patients and caregivers in advocating for their own care, but also helps to build a group of advocates who can work on behalf others to raise awareness and influence research and drug development activities. It can also increase participation in clinical trials. SFA has been a leader in patient education in sarcoma. In 2020, SFA took the lead in offering education sessions for sarcoma patients and COVID and providing information about the latest research. Thousands of members of the community to include medical professionals, patients and caregivers, industry and government have participated in SFA's education sessions.

In 2020 SFA surveyed the community to learn about topics important to them. SFA will use this information to expand our programming and resources. We will offer more thought-provoking sessions with esteemed speakers, interactive webinars, advocate/researcher networking at national meetings, briefings on the latest developments in sarcoma research, recorded one-on-one interviews with sarcoma experts, and short resource videos on topics of importance.