Medical Research

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

Mission

According to the National Research Council, nearly 50% of all pregancies in the U.S. end in the loss of the baby or a child born with a birth defect or chronic health problem. We provide these families with reliable information on their child's disabilities, referrals to helpful resources 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.

Ruling Year

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

Keywords

birth defects, fetal development, special needs, environmental toxins, Agent Orange, Gulf War, congenital

EIN

59-2193816

 Number

6655318256

Cause Area (NTEE Code)

Birth Defects, Genetic Diseases Research (H20)

Alliance/Advocacy Organizations (G01)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Social Media

Programs + Results

What we aim to solve New!

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

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Birth Defects Parent Services and Research

Parent Information & Matching Services

National Birth Defect Registry

Where we workNew!

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 and haven't they accomplished so far?

To build the National Birth Defect Registry to a research repository with 10,000 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.

According to the Center for Disease Control, there have been significant increases in neurobehavioral disorders like Autistic Spectrum Disorders, Attention Disorders, Learning Disabilities and Intellectual Impairment over the last 10-15 years. In addition, today 1 in 32 babies is born with a major birth structural defect (ex. spina bifida, heart defects, cleft palate, missing limbs) that is apparent at birth. If these children are followed for several years, this number increases to 2 in 32 or more.

If our organization identifies links between these increases and preventable cause(s), we can educate the public and reduce these escalating trends.

Birth Defect Research for Children is our country's only National Birth Defect Registry. Through 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/

External Reviews

Photos

Financials

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

Fiscal year: Sep 01 - Aug 31

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  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2016
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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 2017, 2016 and 2016
A Pro report is also available for this organization for $125.
Click here to 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?

No

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

No

ETHICS & 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