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

Rating: 4.83 stars   12 reviews

Issues: Cancer

Location: 976 Lake Baldwin Lane Suite 104 Orlando FL 32814 USA

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 sponsor the National Birth Defect Registry that collects data on 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.
Target demographics: Expectant parents, parents of children with birth defects, veterans, babies and children with birth defects.
Geographic areas served: National
Programs: 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.

2011 Top-Rated Nonprofit
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Rating: 5 stars  

Birth Defect Research for Children (BDRC) is a remarkable nonprofit engaged in exemplary work that benefits today’s children and generations to come. It is a model of high intelligence, cutting-edge research, parent service, and unflagging dedication.

One of the major unrecognized problems facing our nation is the epidemic of illnesses among children: one out of three children suffers from a chronic disorder. Birth defects is the single largest cause of premature and infant deaths. (These statistics come from sources as wide-ranging as the March of Dimes, Mt. Sinai’s Center for Community and Preventive Health, and the Centers for Disease Control.)

For several years, my husband and I conducted background research for our book (Poisoned for Profits: the Toxic Assault on Our Children, published by Random House) to investigate the trends and causes of this epidemic of childhood chronic disease. One of the most distressing facts we uncovered was the abysmal lack of knowledge and assistance, from the public sector at all levels and even from nonprofit institutions chartered to assist…until we (like parents of a child with a birth defect) found Birth Defect Research for Children (BDRC).

We as journalists found the expertise and responsiveness of BDRC of the highest standard. We also discovered the excellence of the BDRC services to parents, communities, scientists and all the institutions struggling to understand, deal with, and prevent the tragedy of birth defects.

BDRC was founded and continues to be headed by Betty Mekdeci, whose son was born with a birth defect. At that time, struggling to find information and support, she found almost none, and so she created an organization that fills those needs for others.

Neither the federal government nor most states (and no localities) maintain a registry of childhood disabilities and illnesses and parental exposures to toxins, especially not for children with birth defects. So, if many children in your neighborhood are born within the same few years with birth defects, you and your neighbors have no way to tell if this is a normal rate or an abnormal one and thus perhaps the result of some abnormal cause. You would have nowhere to turn to access scientific research, nor to find other families for mutual support.

Birth Defect Research for Children stepped forward to fill this enormously critical gap. In collaboration with a group of prominent scientists, they established the National Birth Defect Registry. This powerful tool has been used to identify a pattern of birth defects in numerous American communities, as well as among the children of Vietnam veterans and an unusual cluster of craniofacial birth defects in the children of Gulf War veterans. Veterans exposed to Agent Orange consider the BDRC and Betty Mekdeci as their Joan of Arc. Betty presented the BDRC data on Gulf War veterans to the Presidential Advisory Committee on Gulf War Illnesses, and to the Veterans’ Administration. Registry data have been presented to the National Academy of Sciences, the National Institute of Environmental Health Sciences, and the Environmental Protection Agency, and in many national and international media forums.

The Environmental Health Perspectives (the journal of the National Institute of Environmental Health Sciences) cited BDRC’s National Birth Defect Registry as a new path to exploring linkages between the environment and birth defects in an article on “Environmental Factors in Birth Defects”. BDRC is currently a partner with the University of Texas in a study funded by the Veterans Administration, looking further into causes of the facial defects among children of Gulf War vets. Without data from BDRC’s Registry, this study would not have been possible.

Betty Mekdeci herself is nationally recognized as an expert in this field. The number of national panels she has served on is almost countless. Her scientific understanding puts her on a par with PhDs, though she is self-taught. Whenever there is a conference on birth defects and on environmental toxicants, Betty is one of the invited experts. She represents the voice of a parent melded to the mind of a brilliant researcher.

An example: when the National Institutes of Health convened a working group to explore the state of knowledge on identifying and preventing environmental risks to children’s health. The invitees were a small number of experts, from Yale University to EPA to Mt Sinai Hospital to Deans of Public Health schools, and including the then Director of the National Center on Birth Defects and Developmental Disabilities...and Betty Mekdeci.

Betty also co-authored the premier paper on birth defects and the environment, with Dr. Ted Schettler, one of the nation’s top public health scientists.

It is not only scientists and journalists who find Birth Defect Research for Children indispensable. For families of children with birth defects, BDRC provides both scientific expertise as well as services. The organization can match families with other families who have children with similar birth defects, which reduces the isolation and anxiety often associated with having a child with an unusual illness. They offer information about diagnosis, treatment and resources. They have identified a national network of support groups that can help families with local information, resources and assistance.

For families and professionals alike, BDRC maintains the nation’s most extensive, fully vetted information service on the environmental poisons that may cause birth defects. In addition to its databases, BDRC maintains a website of information and resources that receives more than 240,000 visitors a year.

Families from neighborhoods with high rates of birth defects turn to BDRC for the assistance that is missing from any other source. An example: in the small town of Dickson, TN, an extraordinarily large number of babies were born within a three year period with cleft palates and cleft lips in one quadrant of the town. The parents called upon their local public health agency for help in understanding how this happened and what to do. No response. They turned to the state. No response. They turned to the Centers for Disease Control. No help. The families finally heard of Birth Defect Research for Children and asked for the organization’s assistance (pro bono, of course). BDRC helped the community confirm a cluster of cleft cases and identified a potent toxicant leaching from a dump into the water the mothers had drunk during their pregnancies as the likely trigger. The town (after some delay) remedied the situation, and new birth defects did not occur (tho, of course, the affected children are still suffering).

Birth Defects Research for Children is a model that shows families, communities, scientists and policy makers how to give individual help to individual children while creating the solid science upon which to prevent other children from such enormous suffering.


I've personally experienced the results of this organization in...

Through the BDRC databases and files. I and my co-author were able to incorporate into our book the substantive data about the extent of birth defects in the U.S. as well as the scientific research about likely causes, In addition, BDRC connected us to parents whom we interviewed, to use as case examples in the book. Betty Mekdeci also gave us what amounted to a course in the science of fetal and earIy childhood development. Because of the excellence of this organization, I was glad to join its Board.

If I had to make changes to this organization, I would...

BDRC needs two changes in order to fulfill its capacities. It needs more funding and more visibility (more funding would of course enable the organization to achieve higher visibility).

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

How did you learn about this organization?

Through the research I and my co-author engaged. Scientists in the field of children's environmental health unfailingly pointed us to BDRC as the reliable source of information and research.

What is this organization's top short-term priority?

To extend its effectiveness by reaching more parents (to enhance its Birth Defects registry) and thus to deepen the data upon which substantive research can be pursued).

What is its top priority in the long run?

To reduce the incidence of birth defects in the future by uncovering the causes and thus make informed preventive action possible.

When was your last experience with this nonprofit?

2011

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Role: Professional with expertise in this field
Rating: 5 stars  

The Association of Birth Defect Children has been a leader in the field since the late 1980's. The organization partnered with the NJ Agent Orange Commission in the 1990's to gather data on the birth defect children of Vietnam veterans and provide that data to the National Academy of Sciences - Institute of Medicine committee reviewing scientific studies and making recommendations to the US Dept. of Veterans Affairs concerning possible additional additions to the US Code governing healthcare and monetary assistance to those affected. The organization has been "always there" for Vietnam veterans and their affected children.
Paul Sutton

I've personally experienced the results of this organization in...

I have seen the multiple fields of data gathered, assessed and forwarded to the appropriate agencies.

If I had to make changes to this organization, I would...

Absolutely nothing, other than try to find it more money to continue and expand its mission.

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Rating: 5 stars  

As coordinator of the Physicians Committee for Responsible Medicine’s Humane Seal campaign, I am always on the lookout for health charities that perform effective research without the use of animals.

While investigating Birth Defect Research for Children for a charity spotlight article, I learned of BDRC’s National Birth Defect Registry, a compilation of data on birth defects that is evaluated by researchers to find clusters of defects that may lead to similar prenatal factors. Data reviews have identified factors that cause birth defects in certain areas and have been presented to congressional committees, national media forums, and federal agencies.

In addition to research, BDRC promotes birth defect awareness by spreading information about prevention and by providing a “parent matching” service to connect parents of children with birth defects to support networks.

BDRC’s humane research and advocacy efforts have been invaluable in the fight to eradicate birth defects, and I think more charities should adopt their human-based approach.

I've personally experienced the results of this organization in...

Learning more about how National Birth Defect Registry data has helped explain and prevent birth defects.

If I had to make changes to this organization, I would...

Birth Defect Research for Children does an excellent job performing groundbreaking research and fostering birth defect awareness, and I do not have any changes to recommend.

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Rating: 5 stars  

I find that this organization provides the ultimate in assistance and research as it relates to children with birth defects. I participated in the Registry of the children of Vietnam Veterans with birth defects and have knowledge of the Registry's results and how it is used to further the public and government knowledge of the tragic results of our exposure to toxic herbicides. The relationship of this organization to its "followers" is one of trust in that we know that our problems are looked at with care, concern and that their research is real and will provide and and solutions to our issues.

I've personally experienced the results of this organization in...

the areas of advocacy for children with birth defects. I have witnessed their presentations before government agencies such as the National Academy of Sciences/Institute of Medicine. These presentations of birth defects were of top notch quality which clearly showed that their knowledge of birth defects could not be outdone.

If I had to make changes to this organization, I would...

try to expand their outreach to as many groups and inf=dividuals that could benefit from their knowledge.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

What specific problem, purpose, priority, or project prompted your gift?

Birth Defects Registry of Vietnam Veterans exposed to Agent Orange.

Why did you make your donation at this time?

My feelings are ongoing for the Birth defects Research for Children organization. I will donate to this organization as long as I am able.

What would you tell others about this organization?

The continued research and areas that this organization provides must be allowed to continue. I would urge anyone to not only donate funds but to work with them in any way possible.

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

Birth Defect Research For Children, Inc. is vitally effective and well connected to the community of concerned parents who have struggled with, as well as mastered the challenges of birth defects. They have set up invaluable registries, collected data, implemented policy changes that support many individuals across the Country. I met with the Director, Betty Mekdeci years ago when we were chosen as members of the Public Interest Partners by the National Institute Of Environmental Health Sciences. Our goals in this role, working together with many other disease focused organizations is to seek common environmental threads of environmentally triggered disease. The information provided by this organization, Birth Defect Research For Children is understandable, current and the willingless of this organization to work with other organizations for a common goal is outstanding.

I've personally experienced the results of this organization in...

Sharing the role of co-chairs of the Pubic Interest Partners the Director, Betty Mekdeci has consistantly met the goals and timelines given to her. She is very easy to work with, very respectful and sensitive to others points of view.

If I had to make changes to this organization, I would...

They (BDRC) serve the needs of their population extremely well. They are a role model in regard to working with others. I recommend Betty Mekdeci and the Birth Defect Research For Children, Inc. for this high honor.

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Rating: 5 stars  

BDRC stays out front in tracking relevant data on exposures to developmental toxins, provides sound and essential advice to policy makers, relates in a compassionate and effective way to affected individuals and their families, and fills a unique niche in social and health advocacy.

I've personally experienced the results of this organization in...

Seeing public and legislative consciousness raised regarding enivironmentally caused birth defects.

If I had to make changes to this organization, I would...

None; it is virtually ideal. it would do even more good with more funding.

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Rating: 5 stars  

I have a daughter that was born with spina bifida which was caused by her father's exposure to Agent Orange in Vietnam. My husband died of related heart problems. I was left alone to deal with my daughter's disabilities and a long and emotional battle with the VA system.

Without Betty and Association of Birth Defect Children. I have no idea how I would of made it through this 7 years of hope then let down, then more hope and more tears. Betty has been able to provide me with facts to help me keep going even in the toughest times.

This organization has helped not only me and my daughter but also countless Veterans that served in Vietnam it has become our voice to the world to the effects of Agent Orange on not only the Veterans who served. Their entire families who never served but will spend the rest of our lives fighting the war in Vietnam.

I've personally experienced the results of this organization in...

I have been informed as of this morning that my claim has one more signature and my daughter and I will be approved for benefits for VA

If I had to make changes to this organization, I would...

Let more families know of service that is provided

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

My family was injured by pesticides in 1991 resulting in chronic illnesses which plague us all to this day. Betty Mekdeci, the director of Association of Birth Defect Children, has been an inspiration. She and ABDC have been an excellent source of information about how to understand the linkages between exposures and disease, and this has helped us avoid further damage. Sure, ABDC is about research about birth defects, but many of us suffer from toxicant induced illnesses that surfaced in adulthood. ABDC seized the opportunity to inspire chemically injured persons such as myself, making us willing to teach others in our communities so that they and their offspring may enjoy more healthful lives. ABDC has a reputation for integrity, intelligence, and heart -- and has done an amazing job of gathering and analyzing toxic injury data showing patterns of birth defects and chronic illness.

I've personally experienced the results of this organization in...

Betty Mekdeci, the director of ABDC, gave a presentation at our local Kiwanis Club several years ago. It was the best presentation I've ever seen.

If I had to make changes to this organization, I would...

Clone Betty Mekdeci. I wish this was actually possible.

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

The Association of Birth Defect Children is the go-to organization for the families of Vietnam veterans, and all veterans, with children who have unexplained birth defects, they believe are related to the parent's in-service exposures.

The personal attention, expertise, and compassion that the staff gives to our individual veterans and their families who contact the association is exemplary, and a standard by which all service organizations should be measured.

The Excecutive Director and her staff have lent their knowledge and expertise on chilren's health to the Vietnam Veterans of America Agent Orange Committee continuously since the inception of the organization, advising on a multitude of aspects related to chidren's health and exposures, serving in advisory capacities and holding worshops to educate on the latest developments in the ever-evolving field of children's health.

Through personal contact, a very fine web page, and email updates, the Association of Birth Defect Children provide continuous updates on the ever-evolving science and research.

Veteran families have given the highest praise to the organization for its preeminent and unique role in advising families on the unfortunate legacy of toxic chemical exposure.

I've personally experienced the results of this organization in...

In my conversations with the staff , I am always overwhelmed by their high degree of personal attention and expertise. Universally, I receive the same praise for the staff from the individual veterans who have contacted the Association of Birth Defect Children. The Association is my go-to organization for the latest research an information on the unfortunate legacy of toxic exposure as it visits the second generation of our nation's veterans. Despite the small staff, they are accessible and responsive.

If I had to make changes to this organization, I would...

I would like to see the Association of Birth Defect Children receive assured funding, so that they may continue to fulfill their mission unencumbered by financial concerns.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

What is unique about this organization?

This organization is the only one of its kind that tracks the birth defects and health issues in the children of our nation's veterans. Despite its small staff and continuing struggle to secure a funding base for its mission, it has never failed to respond to the concerns of our veterans.

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Role: General Member of the Public
Rating: 3 stars  

I am the national committee chair for Vietnam Veterans of America's Agent Orange/Dioxin and other toxic substance committee. The link between parental toxic exposures and birth defects in their offspring is an issue that needs more research. Birth Defect Research for Children
provides a valuable service to the general public on the birth defect issue. They provide a data gathering service for Vietnam Veterans who were exposed to Agent Orange herbicides and have childrend with birth defects. I have worked with the organization on the birth defect issue and can testify to the great work they are doing.

I've personally experienced the results of this organization in...

I've personally experienced the results of this organization in the input on legislative issue related to birth defects and veterans; the sharing of scientific information on birth defects; and valuable review of presentations that I have given on the issue of birth defects.

If I had to make changes to this organization, I would...

Expand the ability of the organization to gather birth defect information related to parental toxic exposures and provide funding for research using the current and expanded data collect by the organization. This is especially need in regards to toxin/gene relationship. I rated the organization as meets expectations because so much more could be done with increased funding.

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