Chromosome 18 Registry and Research Society

San Antonio, TX   |  http://www.chromosome18.org

Mission

To help people with chromosome 18 abnormalities overcome the obstacles they face so they may lead happy, healthy, and productive lives.

Ruling year info

1990

Principal Officer

Dr. Jannine Cody

Main address

7155 Oakridge Drive

San Antonio, TX 78229 USA

Show more contact info

EIN

74-2557551

NTEE code info

Birth Defects, Genetic Diseases Research (H20)

Specifically Named Diseases Research (H80)

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

Until the Chromosome 18 Registry & Research Society's President and Founder, Dr. Jannine Cody, began her work over 30 years ago, there were no resources, support, or research available for families and individuals affected by chromosome 18 abnormalities. When Dr. Cody first found herself faced with her young daughter Elizabeth's diagnosis of Chromosome 18q- Syndrome, scientific education and resources were limited. Dr. Cody made the decision to take research into her own hands, and in 1990, she established The Chromosome 18 Registry & Research Society, with the mission to help people with chromosome 18 abnormalities overcome the obstacles they face so they may lead happy, healthy, and productive lives.

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?

The Chromosome 18 Clinical Physician's Management Guides

These guides are a free downloadable resource for physicians and patients alike in need of more information on chromosome 18.

Population(s) Served
Caregivers
Families

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 families enrolled in research study

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

People with disabilities

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of research newsletters

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

Input - describing resources we use

Direction of Success

Increasing

Number of registered members in the U.S.

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

Input - describing resources we use

Direction of Success

Increasing

Years of cutting-edge research

This metric is no longer tracked.
Totals By Year
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.

Our mission at The Chromosome 18 Registry & Research Society is to help people with chromosome 18 abnormalities overcome the obstacles they face so they may lead healthy and productive lives.

Here at the Chromosome 18 Registry, we provide an invaluable support network for our members and their families. The resources we provide and connections we facilitate among members is just one of the ways that we help to decrease the isolation that many families feel after a loved one is diagnosed with a chromosome 18 condition. Additionally, we facilitate numerous online forums to connect members, organize fundraisers, and hold an annual, rotating conference that provides the most current chromosome 18 research in the world. We at the Registry are responsible for providing funding to the Chromosome 18 Clinical Research Center, through fundraising, attaining grants, and collecting member donations. The success of the CRC is contingent on the Registry's abilities to collect and distribute funds.

The Research Center is comprised of 10 employees and serves nearly 700 individuals enrolled in our research study in San Antonio. In their early years,the Research Center focused exclusively on research, and published over 50 papers in scientific journals. Now, in addition to performing original research, they provide information directly to families and their physicians. By providing this information for our members, we hope to help improve the quality of life for those with chromosome 18 conditions. Many projects are ongoing in the Research Center, including the analysis of blood from registry members, the isolation of DNA, and the creation of cell lines for the purpose of long-term research. Those at the Research Center are additionally in the process of compiling detailed management guides for physicians caring for individuals with chromosome 18 conditions. These management guides draw on over 29 years of research and provide essential proactive and preventive care.

Our Registry is nearly 5,000 members strong, and our organization has been steadily growing since its inception in 1990.

The Chromosome 18 Registry and Research Society is responsible for connections between members, fundraising and research initiatives, the Chromosome 18 Annual Conference, and funds the only research center in the world dedicated to chromosome 18 research. We are the only organization advocating for chromosome 18 patients, and without the influence of the Registry, there is no knowing how far along research would be today. Despite the lack of federal funding received for our research initiatives, Chromosome 18 still makes a difference for families in need.

Financials

Chromosome 18 Registry and Research Society
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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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  • Compare nonprofit financials to similar organizations

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Chromosome 18 Registry and Research Society

Board of directors
as of 2/22/2021
SOURCE: Self-reported by organization
Board chair

Jannine Cody

Jannine Cody

UT Health

Dave Aldrup

ABB

John Drymala

Valero Energy Corporation

Katie Bailey

Liz Woodfield

EMD Serono Inc.

Tom Kunkel

US Air Force

Christine Puckett

Hewlett Packard Enterprise

Carol Cohen

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? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

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

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

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data