The Sarcoma Foundation of America, Inc.

Finding the Cure in Our Time

aka SFA   |   Washington, DC   |  http://www.curesarcoma.org

Mission

To advocate for sarcoma patients by funding research and by increasing awareness about the disease. The organization raises money to privately fund grants for sarcoma researchers and conducts education and advocacy efforts on behalf of sarcoma patients.

Ruling year info

2001

Chief Executive Officer

Brandi Felser

Main address

PO Box 98160

Washington, DC 20090-8160 USA

Show more contact info

EIN

52-2275294

NTEE code info

Cancer Research (H30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Sarcoma is a rare cancer of the connective tissue with more than 16,000 new cases and nearly 7,000 deaths each year in the United States. Sarcoma accounts for approximately 1% of diagnosed cancers in adults but 15% - 20% of diagnosed cancers in children. There is tremendous unmet medical need for sarcoma. For most subtypes of sarcoma- there are 50 validated histologic subtypes of sarcoma, with the potential for the existence of over 100 subtypes- there is no FDA approved therapy. Due to its rarity, there is a lack of awareness and understanding which creates obstacles in efforts to foster research and drug development. It also creates obstacles for patients to get appropriately diagnosed and treated. By the time a patient engages with a sarcoma specialist and receives a diagnosis, the sarcoma is at relatively advanced stages. This can make the sarcoma more challenging to treat and often a worse prognosis.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Sarcom Research Funding

The SFA funds Sarcoma research through a number of mechanisms. Each year we fund numerous research grants through an NIH type research grant process. We also fund innovative sarcoma research through other mechanisms including partner sarcoma centers through the Race To Cure Sarcoma event series.

Population(s) Served
Children and youth
Adults

Advocate on behalf of sarcoma patients

Population(s) Served
Children and youth
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of research studies funded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Related Program

Sarcom Research Funding

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    SFA has many different stakeholders. Our primary stakeholders are sarcoma patients and survivors. Stakeholders also include health care professionals, researchers, and industry leaders.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email, Social Media,

  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We are providing more targeted education offerings on topics requested by our stakeholders based on feedback we requested. We are also offering information about clinical trials on our website and through our education offerings to better service our community.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    Asking for and receiving feedback from our stakeholders has allowed us to better serve the needs of our community and provide them with the resources they request and need.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

The Sarcoma Foundation of America, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

The Sarcoma Foundation of America, Inc.

Board of directors
as of 3/3/2021
SOURCE: Self-reported by organization
Board chair

Mark Thornton

Patricia Thornton

Mark Thornton

John Brooks

Chris Connery

Michael Lewis

Tom Peroulas

Jennifer Goodwin

Amira Yunis

Justin Green

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 03/02/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 03/02/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.