Association Of Birth Defect Children, Inc. dba Birth Defect Research for Children

"because every birth defect has a cause"

aka Birth Defect Research for Children   |   Orlando, FL   |  www.birthdefects.org

Mission

We provide 100,000 families each year with reliable information on their child's birth defects, referrals to helpful resources & support groups and opportunities to connect with families who have children with similar problems. We also created the National Birth Defect Registry that collects data on the causes of birth defects that can lead to birth defect prevention. Registry data has been used for research studies and community advocacy and presented to state and federal agencies as well as in media forums. We also have the Healthy Baby Resource that has the most current information to help expectant parents have healthier babies.

Ruling year info

1982

Executive Director

Ms. Betty I Mekdeci

Director of Finance & Parent Services

David M Mekdeci

Main address

976 Lake Baldwin Lane Ste. 104

Orlando, FL 32814 USA

Show more contact info

Formerly known as

Association of Birth Defect Children

EIN

59-2193816

NTEE code info

Birth Defects, Genetic Diseases Research (H20)

Birth Defects (G20)

Research Institutes and/or Public Policy Analysis (C05)

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

All over the country, there are clusters of birth defects in communities where certain toxic exposures in the water and/or air may be a common factor. Birth Defect Research for Children has a new Community Resource Center on our website where parents can contact us to begin an investigation through registry data collection.
BDRC was able to help a community in Tennessee with this kind of project. We identified a cluster of cleft palate cases (later confirmed by the CDC) linked to solvents leaking into the public water supply from an old landfill that was not capped or lined. Ultimately, the landfill was capped; the water supply moved away from the landfill and residents were warned not to drink well water since the solvents had also been buried all over the county. BDRC helped this community at no charge, but we need to build a fund so we can assist other communities who contact us.

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?

Birth Defects Parent Services and Research

Fact sheets and/or individualized research on the major categories of birth defects.
Parent matching services.
Support group and resource referrals.
Technical assistance to communities with increases in birth defects linked to toxic exposures.
Research through the National Birth Defect Registry.
Education on birth defect prevention through our medically-reviewed Healthy Baby Resource.

Population(s) Served

Parents of children with birth defects are provided with specific information, resources and support referrals for their child's birth defect(s).  The parent can also be connected with other families who have children with the same disabilities through our Parent Matching Program.

Population(s) Served

The National Birth Defect Registry was designed through a collaboration of seven scientists to collect data on structural and developmental birth defects as well as health, genetic and exposure histories of both parents.  Registry data are used to investigate the causes of birth defects.

Population(s) Served

Where we work

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.

To build the National Birth Defect Registry to a research repository with 20,000 cases within the next two years.

To increase traffic to our Healthy Baby Resource so more prospective parents will know how to have a healthier baby.

To offer parents of children with birth defects the information and support they need to raise a child with unique challenges.

1) Public outreach for our web site and the National Birth Defect Registry through magazine ads in parenting magazines
2) Search Engine Optimization to increase traffic to Birth Defect Research for Children's web site www.birthdefects.org
3)Ad Words promotion through Google grant to bring more families to the web site.

The National Birth Defect Registry was designed through a collaboration of scientists with expertise in all areas related to birth defects. The Registry has a track record of identifying links between clusters of birth defects and similar exposures or prenatal conditions.
Registry research has been presented to the National Academy of Sciences; the National Institute of Environmental Health Sciences; the EPA; the FDA; the Presidential Advisory Committee on Gulf War Illnesses; the Scientific Advisory Committee of the VA and in national media forums.

Birth Defect Research for Children is our country's only National Birth Defect Registry. There are now 10,000 cases in the registry. Through analysis of registry data, we have discovered important links between environmental exposures and birth defects.

At this link are summaries of accomplishment made with registry data.
http://www.birthdefects.org/national-birth-defect-registry/registry-research/

Financials

Association Of Birth Defect Children, Inc. dba Birth Defect Research for Children
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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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Association Of Birth Defect Children, Inc. dba Birth Defect Research for Children

Board of directors
as of 4/15/2020
SOURCE: Self-reported by organization
Board chair

Betty Mekdeci

Birth Defect Research for Children

Betty Mekdeci

Birth Defect Research for Children

Sandra Glaize

Orange County School System

Ed Kerben

Kerben Law Firm

Michael Mekdeci

Stetson University

Alice Shabecoff

No Affiliation

David Glaize

Seminole Community College

Karen Morcomb

Business owner

Rachel McDonald

Legal assistant

Mokie Porter

Vietnam Veterans of America

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No