Medical Research

Chordoma Foundation

Durham, NC

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

2007

Executive Director

Mr. Josh Sommer

Main Address

PO Box 2127

Durham, NC 27702-2127 USA

Keywords

Chordoma, Sarcoma, Rare Cancer, Cancer, Bone Tumor, Brain Tumor, Collaboration, Medical Research, Cancer Research

EIN

20-8423943

 Number

2778804522

Cause Area (NTEE Code)

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.

Sign in or create an account to view Form(s) 990 for 2018, 2017 and 2016.
Register now

Social Media

Programs + Results

What we aim to solve

Chordoma is a rare cancer that grows in the bones of the skull and the spine. It strikes people of all ages; occupies some of the body's most valuable real estate: near the brain, spinal cord, nerves, and vital arteries; is complicated to remove; and, commonly regrows. We are relentlessly pursuing better treatments, better care, and a better experience for all affected.

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

Research Coordination

Chordoma Biobank

Cell Line Repository

Model Development

Patient Services

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of donations made by board members

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Total dollar amount of grants awarded

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total number of grants awarded

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Average number of dollars received per donor

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of overall donors

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of unique website visitors

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of downloads of the organization's materials and explanations

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of clients served

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Patient Services

Type of Metric

Context - describing the issue we work on

Direction of Success

Holding steady

Number of referrals to resources offered

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of conference attendees

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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 Chordoma Foundation's mission is to improve the lives of those affected by chordoma and lead the search for a cure. This includes a goal of testing 10 highly promising treatments for chordoma in clinical trials by 2020.

To accelerate the search for a cure, we initiate and fund high-impact research, facilitate information exchange and collaboration among researchers, and provide scientific resources needed to study chordoma.

To help patients get the best care possible, we offer Patient Navigation Services for one-on-one support, provide information about the latest treatment options, refer patients to experienced doctors, and match patients with trained peer support mentors.

Building on our progress to date, we will continue to focus on key initiatives in patient services, healthcare improvement, and research. We will continue to grow our team, and create yearly goals with the support of our Board of Directors.

We continue to make progress in our urgent search for better treatments that can stop chordoma from progressing, improve quality of life, and ultimately, cure the disease. Tangible progress is evident by the increasing interest from researchers in studying chordoma, new treatment options, and extending the life of those diagnosed with chordoma.

Better treatments. Better medical care. A better experience for chordoma patients and their families.

Through new and enhanced Patient Services, we are now offering those affected by chordoma a place to turn for comprehensive information, guidance, and support throughout their journey with the disease. With new Healthcare Improvement initiatives, we are helping to raise the standard of care doctors provide to chordoma patients. 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.

External Reviews

Financials

Chordoma Foundation

Need more info on this nonprofit?

Need more info on this nonprofit?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

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?

Yes

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

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