Medical Research

The Sarcoma Foundation of America, Inc.

Finding the Cure in Our Time

aka SFA

Washington, DC

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

2001

Executive Director

Brandi Felser

Main Address

PO Box 98160

Washington, DC 20090-8160 USA

Keywords

sarcoma, cancer, pediatric cancer, research, education, patient advocacy

EIN

52-2275294

 Number

0636145449

Cause Area (NTEE Code)

Cancer Research (H30)

IRS Filing Requirement

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

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Social Media

Programs + Results

What we aim to solve

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Our programs

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

SOURCE: Self-reported by organization

Sarcom Research Funding

Patient Education Conferences

Sarcoma Advocacy

Where we work

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

The goals of the Sarcoma Foundation of America is to: 1) Fund innovative Sarcoma Research, 2) Provide education and disease specific information to Sarcoma patients, their families and loved-ones, 3) To raise public disease awareness and 4) To advocate for legislative and regulatory changes that speed the development and delivery of novel innovative therapeutics to the Sarcoma patient community.

Our strategy is to interact with all appropriate stakeholders in ways to facility bringing together the human and capital resources necessary to attain our goals. With respect to funding Sarcoma research, we have taken the approach to engage the Sarcoma community and the public at large to create, facilitate and manage a sarcoma research grant giving facility that funds $0.5M of sarcoma research each year through a peer-review process. We are also expanding our patient education conferences so patients can better advocate for themselves. Through these activities we show potential funders the impact we are having for our patient community. As we raise more funds we will be able to expand the programs we have and fill other gaps with new programs. We hope that increased impact for our patients will always translate into better fundraising so can continue the cycle of improving, expanding and creating new programs.

We currently have a staff of six people with expertise across finance, fundraising, research, social media and patient advocacy. We also engage the volunteer community to help us raise more financial support for our programs through various events and our chapter program.

The SFA will know it is making progress when we see the research funding we have provided over the years translate into new therapeutics for our patients. It is important that the disease is understood at a basic and translational level to help develop new and improved therapies and to encourage industry to make the necessary investment in those new therapies. Our patient community needs more cures. We will also know we are making progress when the average sarcoma patient is educated about their disease well enough that they are empowered to better advocate for the best treatment possible. Lastly, we will know we are making progress when the average American knows what a sarcoma is, that it is a cancer, a rare cancer and that the adults and children that get sarcomas need their help.

With respect to funding research, we are about to cross the $1M per year mark. That is a great accomplishment. But that is not enough. We need to fund more research. Our next goal is to get to the $2M per year mark. With respect to patient education, this year is a watershed year as we are expanding from one conference to five conferences. Again a great achievement but still not enough. We need to touch more patients around the country. We hope to continue to increase the number of conferences each year to have better accessibility for our patients.

External Reviews

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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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

No

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & 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?

No

Organizational Demographics

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Sexual Orientation

This organization reports that it does not collect this information.

Disability

This organization reports that it does not collect this information.

Diversity Strategies

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We track retention of staff, board, and volunteers across demographic categories
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We track income levels of staff, senior staff, and board across demographic categories
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We track the age of staff, senior staff, and board
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We track the diversity of vendors (e.g., consultants, professional service firms)
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We have a diversity committee in place
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We have a diversity manager in place
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We have a diversity plan
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We use other methods to support diversity