Chordoma Foundation

Durham, NC   |  www.chordoma.org

Mission

The Chordoma Foundation proactively initiates, facilitates, and funds research to accelerate the development of effective treatments, and ultimately a cure, for chordoma, while improving the diagnosis, treatment, and quality of life for people affected by this deadly bone cancer.

Notes from the nonprofit

You can make a donation to the Chordoma Foundation today at: https://impact.chordomafoundation.org/give/126704/#!/donation/checkout

Ruling year info

2007

Executive Director

Mr. Josh Sommer

Main address

PO Box 2127

Durham, NC 27702-2127 USA

Show more contact info

EIN

20-8423943

NTEE code info

Cancer Research (H30)

Alliance/Advocacy Organizations (E01)

Alliance/Advocacy Organizations (G01)

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

Chordoma is a rare type of cancer that occurs in the bones of the skull base and spine. Chordomas are complicated tumors to treat due to the involvement of critical structures such as the brainstem, spinal cord, and important nerves and arteries. They can also recur after treatment — usually in the same place as the first tumor. In about 30 to 40 percent of patients, the tumor eventually spreads, or metastasizes, to other parts of the body. When chordomas recur or metastasize, there is little that can be done to help the patient. The only way that new and improved chordoma treatments will be developed is by funding much-needed research. The Chordoma Foundation is continuously investing in high impact research projects that will improve outcomes for patients. We also offer a variety of resources to help patients and survivors achieve the best outcomes and quality of life possible.

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?

Research Coordination

The Chordoma Foundation takes a big-picture, systems-based approach to the problem of curing chordoma, ensuring that time and resources are focused to achieve maximum results as quickly as possible. With the input of a diverse group of experts from around the world, we have created a roadmap for developing new effective treatments for chordoma, and serve as the engine to drive this plan forward. This roadmap takes advantage of the latest technology to rationally identify potential therapeutics through genomic and proteomic tumor profiling, model system development, and drug screening.
Beyond awarding grants, the Chordoma Foundation takes an active role in every aspect of the research process by formulating research priorities, recruiting the best researchers, initiating new projects, brokering collaborations, and breaking down barriers to progress. We are working to overcome major research barriers by 1) fostering communication and collaboration among and between physicians and scientists 2) providing access to chordoma tissue and cell lines, and 3) securing funding for research.

To ensure that chordoma tumors are properly saved and made available to researchers we are establishing a tissue and cell line repository (BioBank). Tissue and cell lines are the starting point for virtually all research and are necessary to find a cure. The Chordoma Foundation BioBank will enable researchers from multiple fields to apply the latest scientific advances to understand the cause of chordoma and develop new treatments.

Additionally, we host yearly International Chordoma Research Workshops to foster collaboration, speed the exchange of new data, and collectively review future research directions. We constantly monitor the latest discoveries and act quickly to bring in relevant collaborators and resources in order to efficiently build on new leads.

While working towards a cure, we strive to help chordoma patients get the best clinical care possible by working with experts to develop treatment and diagnosis recommendations, and by producing educational materials to help patients make informed healthcare decisions. Through our website we provide resources for patients and caregivers, up-to-date clinical trial information, and a chordoma knowledgebase for health professionals and the public alike. We believe that patients are the biggest stakeholder in the treatment development process, and we seek to empower patients and their families to take an active role in bringing about a cure.

Population(s) Served
People with diseases and illnesses

The Chordoma Foundation Biobank is a centralized repository of tumor tissue and blood contributed by chordoma patients to help advance research. The Biobank protects and preserves these samples and makes them available to qualified researchers interested in studying chordoma. A single sample sent to the Biobank may be divided and shared among several different labs to support multiple research studies. Additionally, the Chordoma Foundation Biobank collects clinical information from chordoma patients to enable research into factors that affect treatment and outcomes.

Population(s) Served
People with diseases and illnesses

The Chordoma Foundation maintains a collection of validated chordoma cell lines and makes them available to the research community to foster research on chordoma. All cell lines in the repository are extensively characterized to ensure that they are valid models of chordoma. Since 2008, we have distributed cell lines to over 45 labs across the world, enabling numerous research projects that otherwise would not have been possible.

Population(s) Served
People with diseases and illnesses

Disease models are research tools used to represent – or "model” – the behavior of human tumors in a laboratory setting, allowing scientists to study living tumor cells without experimenting on people. They are critical for many types of research needed to understand the biology of chordoma and develop new treatments.

There are three main types of models that scientists use to study cancer(http://www.chordomafoundation.org/glossary/#cancer) : cell lines, xenografts, and transgenic models. Each serves an important purpose, and has its own unique benefits.

» A cell line is a family of constantly-dividing, immortal cancer(http://www.chordomafoundation.org/glossary/#cancer)  cells all derived from a single tumor, which are grown in a plastic dish. Cell lines are used for a wide range of different experiments, and are particularly useful for high-throughput drug screening – testing thousands of drugs at a time.

» Xenografts are human tumors that are implanted and grown inside laboratory animals. Like cell lines, they are used to test the response of the tumors to various drugs. The primary advantage of xenografts is that they are grown inside a living organism under conditions that more closely mimic actual human tumors.

» Transgenic models are animals (usually mice) genetically engineered to develop tumors that mimic specific human cancers. Transgenic mouse models are particularly valuable for understanding the underlying biology of human tumors, and, like xenografts, are also useful for drug testing.

In the past, chordoma research was severely limited by lack of these models. We are working to overcome this situation by supporting the development and characterization of new cell lines and animal models.

Population(s) Served
People with diseases and illnesses

Living with chordoma is an evolving journey from diagnosis through treatment, recovery, and survivorship. The Chordoma Foundation provides information and resources to help patients, their family, and friends effectively navigate life with chordoma at each step of the way.

Population(s) Served
People with diseases and illnesses
Caregivers

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.

Total dollar amount of grants awarded

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

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of website pageviews

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

Output - describing our activities and reach

Direction of Success

Increasing

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.

We envision a future in which everyone affected by chordoma is able to overcome the disease and maintain their quality of life.

We initiate and fund high-impact research, facilitate information exchange and collaboration among researchers, and provide scientific resources needed to study chordoma.

In addition, to help patients get the best care possible, we offer one-on-one support through our Patient Navigation Service, provide educational materials with details about the latest treatment options, refer patients to experienced doctors, match patients with trained peer support mentors, and host virtual support groups. And, most recently, our Chordoma Survivorship Initiative is helping members of the chordoma community learn about common quality-of-life challenges, and find ways to manage and overcome them.

Our staff includes experts in research, patient services, social work, communications, and more. We're guided by a Board of Directors comprised of leaders in nonprofit management, medicine, business, finance, and law who provide strategic oversight and guide the pursuit of our mission. We also have Medical and Scientific Advisory Boards comprised of some of the world’s leading chordoma researchers and specialists. In addition, we've built a network of hundreds of chordoma specialists across the world, including nearly every leading chordoma treatment team in the U.S. and Europe. Finally, we rely on a team of volunteers to help us provide support and resources to as many patients as possible.

Our work to date has already resulted in better treatments, better care, and a better experience for chordoma patients and their families.

More than ten years of strategic investments in research are paying off with a wave of promising new treatments moving toward clinical trials. Our investments in laboratory research have identified potential treatment approaches for chordoma. And we continue investing in research to find vulnerabilities in chordoma to open doors to new treatments.

Each year, we serve many hundreds of chordoma patients and families, who turn to the Chordoma Foundation as a source of support and guidance. We are a reliable source of information and support in helping them navigate their unique needs and challenges.

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 shared information about our current feedback practices.
  • 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), Case management notes, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

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

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • With whom is the organization sharing feedback?

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

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

    We collect feedback from the people we serve at least annually, 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 act on the feedback we receive,

  • 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

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

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Chordoma Foundation

Board of directors
as of 02/22/2022
SOURCE: Self-reported by organization
Board chair

Mr. David Sandak

Paula Song

University of North Carolina

Josh Sommer

Chordoma Foundation

Joel Beckman

Greenbriar Equity Group LLC

Kerry Shad

Smith Anderson

Christy Shaffer

Hatteras Venture Partners

Ingemar Lanevi

Shreyas Patel

University of Texas MD Anderson Cancer Center

Steven Mandel

Denham Capital

David Sandak

Accelerate Brain Cancer Cure

David Drewry

University of North Carolina

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? No

Organizational demographics

SOURCE: Self-reported; last updated 6/29/2021

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

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data