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Birth Defect Research for Children
Formation1982
FoundersBetty and Mike Mekdeci
TypeNon-profit organization
HeadquartersOrlando, Florida, U.S.
Executive director
Betty Mekdeci
Websitewww.birthdefects.org
Formerly called
Association of Birth Defect Children (1982)

Birth Defect Research for Children, Inc. (BDRC) is a 501(c)(3) American non-profit organization that provides information to parents and specialists about birth defects, related causes and medical care, plus support group counsel.[1] BDRC offers a parent-matching program that connects families with children living with similar birth defects, as well as up-to-date news regarding the most recent findings in birth defect research. The organization also sponsors the National Birth Defect Registry.[2]

History

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In 1975, after her own son was born with birth defects, Betty Mekdeci took an interest in birth defect research. Information about birth defects was scarce during this time and not easily accessible to the public. Consequently in 1982, Betty and her husband Mike established the Association of Birth Defect Children, known today as Birth Defect Research for Children.[3] Betty had left behind her job as an advertising copywriter to focus on the organization, one geared to helping parents in the same predicament as the Mekdecis. The grassroots campaign operated on a modest budget sourced primarily from donations and grants.[4] Though Betty initially spent her time collecting birth defect and environmental exposure data related to the birth of her son, she would eventually devote her attention to helping the children of Vietnam veterans[5] who have developed birth defects as a result of exposure to the Agent Orange toxin.[3]

Bendectin controversy

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Following the birth of their son, the Mekdecis contacted the U.S. Food and Drug Administration concerning medications prescribed to Betty while she was pregnant. With help from FDA insiders, they managed to target Bendectin, a medically-approved drug used to treat nausea and vomiting during pregnancy. After an unrelenting, seven-year investigation into Bendectin, the medication was taken off the consumer market in 1982.[4]

National Birth Defect Registry

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The National Birth Defect Registry is a research project founded by BDRC which examines the relationship between birth defects and exposure to pharmaceutical drugs, cigarettes, alcohol, plus harmful environmental toxins like mercury, lead, dioxin and pesticides.[2] Devised by a team of seven scientists,[6] the online project works by gathering data on both the birth defects and the exposure of each parent prior to conception.[7] This data is then used to study the causes behind birth defects.

The BDRC registry is the only one of its kind in the country. Used in research studies as well as for social advocacy, the registry data has also been submitted to government agencies at both state and federal levels and in various media forums.[6]

Agent Orange

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In 1986, the Agent Orange Class Assistance Programs were first introduced.[3] That same year, Betty Mekdeci had been working on a project that involved counseling the families of Vietnam war veterans and generating a series of factsheets about the disorders the parents were noticing in their children. This process ultimately lead to the creation of BDRC's National Birth Defect Registry.[4]

After analyzing the exposure section of the registry forms, collected from thousands of Vietnam veterans' families, BDRC found that the compiled data showed a consistent pattern of defects in their offspring,[3] particularly conditions which impact the nervous and immune systems.[5] Other notable health problems revealed include learning deficiencies, thyroid issues and childhood cancers.

In 1992, Birth Defect Research for Children submitted a report on Agent Orange to the U.S. House Committee on Veterans' Affairs and the National Academy of Sciences Committee.

Today, Mekdeci's organization is working on a means to allow Vietnam veterans and their families to come to a centralized location to receive a comprehensive health assessment.[3]

Gulf War Exposures

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The National Birth Defect Registry has also evaluated birth defects in the children of Gulf War veterans. This investigation found 33 babies born with Goldenhar syndrome.[8]

Dickson County Water Contamination

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Between 1997 and 2000, the Tennessee Department of Health led an investigation into a rise in cleft lip and cleft palate malformations in Dickson County newborns. When BDRC carried out its own investigation into the occurring birth defects, it discovered that the toxic chemical substance trichloroethylene (TCE) had seeped into a well that supplied water temporarily to the city in 1997.[9] The organization's linking of TCE exposure with the increased cleft palate cases was later verified by the CDC.[10]

The Healthy Baby Resource

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The Healthy Baby Resource is a BDRC program aimed at the prevention of birth defects. The medically-reviewed resource is designed to educate families on how to produce healthier babies.[6]

References

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  1. ^ "Organizational Database (ODB)". NORD (National Organization for Rare Disorders). Retrieved 2018-01-25.
  2. ^ a b "Birth Defect Research for Children, Inc.-BDRC". Office of Disease Prevention and Health Promotion. 2015-09-15. Retrieved 2018-01-25.
  3. ^ a b c d e Jim Belshaw. "Faces of Agent Orange" (PDF). Vietnam Veterans of America. Retrieved 2018-01-25.
  4. ^ a b c Michelle Bearden (2017-10-02). "Agent Orange: A Toxic Legacy". Evergreen Wellness. Retrieved 2018-01-26.
  5. ^ a b Charles Ornstein, ProPublica, Mike Hixenbaugh (2016-12-16). "Agent Orange curse: Vietnam vets can pass birth defects to their kids, new data suggests". The Virginian Pilot. Retrieved 2018-01-25.{{cite web}}: CS1 maint: multiple names: authors list (link)
  6. ^ a b c "Association Of Birth Defect Children, Inc. DBA Birth Defect Research for Children". GuideStar. Retrieved 2018-02-19.
  7. ^ "Directory of Organizations". National Institute on Deafness and Other Communication Disorders. Retrieved 2018-01-25.
  8. ^ Research Advisory Committee on Gulf War Veterans’ Illnesses (November 2008). "Gulf War Illness and the Health of Gulf War Veterans" (PDF). Boston University. Retrieved 2018-01-26.
  9. ^ The Associated Press (2001-02-17). "No Clear Cause for Cleft Palates, Lips in 18 Dickson Infants, State Reports" (PDF). Smile Train.org. Retrieved 2018-02-13.
  10. ^ Bob Weinhold (October 2009). "Environmental Factors in Birth Defects: What We Need to Know". NCBI (National Center for Biotechnology Information). Retrieved 2018-02-13.
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