Birth Defect Research for Children. Annual Report

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Transcription:

Birth Defect Research for Children Annual Report 2016-17

National Birth Defect Registry The National Birth Defect Registry founded and operated by Birth Defect Research for Children now has over 5000 case reports. These data are used for studies, advocacy and prevention research.

NIESH Partners BDRC s Associate Director, David Mekdeci attended the annual National Institute of Environmental Health Sciences Partners meeting with Institute Director, Dr. Linda Birnbaum. Partners is a group of nonprofits and health advocates concerned about environmental exposures and adverse health effects. BDRC s Director is co-chair of the Partners who participate in monthly calls featuring the research of NIESH scientists.

Carol Kwiatkowski, Ph.D. Meet the Newest Members of Our Scientific Advisory Board Rodney Dietert, Ph.D. Dr. Carol Kwiatkowski is the Executive Director of TEDX, The Endocrine Disruption Exchange, and an Assistant Professor Adjunct at the University of Colorado Boulder. Dr. Rodney Dietert is Professor of Immunotoxicology at Cornell University in Ithaca, New York. He received his PhD in immunogenetics from the University of Texas at Austin.

Environmental Birth Defects BDRC monitors research linking medications, metals, radiation, chemicals and other environmental toxins to birth defects. Through the National Birth Defect registry, data on these exposures are collected to look for patterns of birth defects that may be associated with these toxins. These data are used for studies, community advocacy and as an early warning system for birth defect prevention.

Environmental Birth Defects This past year BDRC released our latest report from the National Birth Defect Registry on Birth Defects in Vietnam Veteran s Children. Data from 1400 veteran s children was analyzed and presented in a 15 page report.

Toxic Exposure Research Act Since 2009, BDRC has worked with the Vietnam Veterans of America for the creation of a research center to study the effects of toxins on the children of military veterans. A bill for the center was incorporated into the Veterans First Act and that bill was then passed unanimously by both the House and Senate and signed into law by the President in December of 2016. Implementation of the law is just beginning.

Agent Orange Riders The Agent Orange Riders is a group of patriotic citizens who are working together to promote Agent Orange birth defect awareness to all veterans, their families, and the population at large concerning the medical problems caused by our military s use of Agent Orange. They ecourage all children of veterans to register with the National Birth Defect Registry and help fund research. There are now two chapters of the Riders that have donated thousands of dollars to help fund BDRC s research.

Parent Support Services Birth Defect Research for Children has over 100 fact sheets on structural and functional birth defects that parents can download from BDRC s web site. Parents can also find connections to other families who have children with the same conditions by visiting BDRC s Support Center or by participating in BDRC s Parent Matching Program when they fill out the questionnaire for the National Birth Defect Registry. more than 1000 parents with specific information about their child s birth defects along with referrals to support groups and other resources. These families come from every state and several provided more than 1000 parents with specific information about their child s birth defects along with referrals to support groups and other resources. These families come from every state and several foreign countries. countries.

Outreach and Education Each month BDRC sends out Birth Defect news to over 6,000 subscribers on our Constant Contact newsletter list. Every day, we post timely news items on Face Book to over 8,000 friends. These news articles report on the latest research on birth defects and their causes, especially preventable causes. BDRC also does outreach for the National Birth Defect Registry, this year, through four half page ads in the national magazine Healthy Mom & Baby.

Birth Defect Registry Parent Forum This past year we started the National Birth Defect Registry Parent Forum. This is a closed group designed to bring together parents who have filled out the National Birth Defect Registry sponsored by Birth Defect Research for Children so they have a place to discuss their child s conditions. Currently we have over 300 parents in the forum.

Thanks for Giving Us A Hand Agent Orange Riders American Legion Child Welfare Fdn American Legion Auxiliary of New York Carson Family Foundation Children s Charities of America Karen Morcomb Curves Campaign National Veterans Service Fund Sandy Wilson for Veterans Research Wolzinger Family Foundation State employees in: California, Connecticut, Florida Illinois, New Jersey, New York, Texas and Washington Employees from AT&T, Microsoft and Liberty Mutual.