Clear Cell Sarcoma Foundation

Stomping Out Sarcoma

aka Clear Cell Sarcoma Foundation   |   CHARLESTON, SC   |  Clearcellsarcoma.org

Mission

Sara’s Cure is a grassroots, race-against-time campaign focused on funding critical research to find a cure for Clear Cell Sarcoma. The mission of Sara’s Cure is to make clear cell sarcoma survivable through education and scientific research while ensuring all patients and caregivers impacted have a voice and platform to enact change and strive toward the cure.

Ruling year info

2018

President

Mrs Laneen Duke Woods

Main address

P.O. Box 13418

CHARLESTON, SC 29422 USA

Show more contact info

EIN

82-5445706

NTEE code info

Cancer Research (H30)

Fund Raising and/or Fund Distribution (G12)

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

Clear Cell Sarcoma has been defined as an ultra rare sarcoma by the international sarcoma community that affects less than 300 patients per year in the US. We believe those numbers are much higher but lack an international insurance code to correctly track the numbers and gather data. Those affected are primarily adolescents and young adults and the disease is often very aggressive. Diagnosis is often missed causing deadly outcomes. There are no known effective treatments for long term survival. There are very few research materials such as tissue and natural history studies of the disease leaving scientists and clinicians grossly unaware of this rare cancer.

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?

CCSF Research Funding

We are raising money to fund patient travel to access a first of its kind clear-cell sarcoma trial currently in phase I/II. We are working directly with the FDA as well as top scientists/researchers in the clear-cell sarcoma field.

Population(s) Served
Young adults
Adolescents
Children
People with diseases and illnesses

Sara’s Cure is working to create a first ever patient registry for clear cell sarcoma

Population(s) Served
Adults
Chronically ill people
Terminally ill people
Adolescents
Children

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 meetings with policymakers or candidates

This metric is no longer tracked.
Totals By Year
Related Program

CCSF Research Funding

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Policymakers and candidates include those that write protocols and approve drug trials. This can be pharma, FDA or those that influence research

Number of coalition meetings

This metric is no longer tracked.
Totals By Year
Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of community events or trainings held and attendance

This metric is no longer tracked.
Totals By Year
Related Program

Patient Registry/Natural History Survey

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

To include fundraising events, education, nano course, patient focus groups

Number of individuals attending community events or trainings

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This number is hard to measure unless the events are invitation only. Many during COVID were by zoom. these are estimates based from our donor platform contacts

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.

Clear Cell Sarcoma Foundation began when our daughter was prescribed a treatment for another sarcoma that has been shown to spread the CCS. This is the standard "go to" for many peds patients and we aim to change that by being the hub of information for doctors, scientists and patients. We do this work to not only bring awareness to this ultra rare cancer but to save lives through educating the medical world, supporting tissue collection and inspiring research that will lead to a cure. We aim to create the foundation for a better future for CCS and ultra rare sarcoma without a voice.

Clear Cell Sarcoma Foundation (Formerly Sara's Cure) funded repurposed drugs testing on clear cell sarcoma cell lines to find a combination that will work on this horrible cancer. We are establishing a patient driven and patient reported natural history documentation to compile critical information for doctors, scientists and patients to direct how to treat and how NOT to treat for best outcomes. Keeping patients alive through best practices like surgery and not unproven random treatments allows patients to direct their treatments and to engage more and take on the roles of advocates within our organization. Our CCS family is empowered and engaged. By keeping this organization running smoothly and providing a place for the patient to be "seen and heard" Clear Cell Sarcoma will be launched into the realm of public research where discoveries are made.

Our capabilities come from our financial supporters and patients through the funding we receive that allows us to get in front of the regulators, attend conferences with drug developers and advise the bodies that oversee medical research in areas of unmet need. All of this combined gives the patient community a place to be seen and heard. Clinicians have awakened to the CCS families existence and they hear the patients voices through our constant contact and participation in all types of sarcoma based opportunities like conferences and coalitions. Being the only patient focused advocacy organization for CCS brings the world of patients together in one place and makes our voice too loud to ignore. No one should hear the words "your child has clear cell sarcoma and we don't have a treatment" ever again.

Clear Cell Sarcoma Foundation has awakened the research and science world to to our rare cancer type. In our short existance we have convinced the FDA to work with us and a small drug company on creating a first ever CCS trial based on preclinical evidence in the lab. We are funding the patient travel. We offer patients a platform to voice their concerns, struggles, treatments, reports and more. We are an organization that lets them know that although their cancer is Ultra Rare they are not alone. We facilitate peer to peer support so no patient is isolated and led to believe they are alone. We have created a seat at the sarcoma table with the pharmaceutical world, oncology world, rare disease community and the governmental regulatory agencies by participating in councils and task force meetings as well as holding leadership positions in sarcoma. We have been included on a grant with The Broad Institute to create critical research materials for the scientific community. We have built the momentum to find the cure. Our future goals are to keep supporting advancing less toxic treatments and supporting other ultra rare sarcoma subtypes like we have been supported

Financials

Clear Cell Sarcoma Foundation
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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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Clear Cell Sarcoma Foundation

Board of directors
as of 09/22/2022
SOURCE: Self-reported by organization
Board chair

Mrs. Laneen Woods

Lowcountry Living Group

Term: 2018 -

Jenae Heller

Imagineer Technology

Bruce Newby

Medical Sales Company

Nan Deturk

Black Powder Advisors

Dru Williams

Rogue Motion

Kelley Argraves

CDMRP

Dawn Judd

Hindke and Clarey

Evan Barnes

Branded by Greenville

Dennis Woods

Dade Paper