1. When was your organization started?
2. Who are the founding board members?
3. Are you seeking new board members?
4. Where is your foundation located?
5. Will this be a national or international foundation?
6. Why was the Fetal Physiology Foundation started?
7. Which developmental disorder is your organization interested in researching?
8. Why is your approach not widely represented?
9. What is your primary purpose or goal?
10. What do you see as your overall niche with respect to research into developmental disorders?
11. Part of your purpose is to promote discussion. Does this mean that advocacy is part of your mission?
12. Autism is currently in the media spotlight. Is understanding the cause of autism an important part of your mission?
13. A lot is being said about autism being caused by environmental factors, how do you see the environment causing developmental disorders?
14. Have you sponsored any activities relevant to your mission?
15. Are you planning any future symposiums?
16. Have you funded any research?
17. Do you have a research agenda?
18. If you were to be successful in raising money to fund research, what kind of studies would you fund?
Q1. When was your organization started?
A1. The concept for the Fetal Physiology Foundation was discussed and shaped over 5 years ago by the founding members. We filed our corporate documents in the state of Maryland on September 26, 2003 and received our 501(C)(3) status on May 27, 2004.
Q2. Who are the founding board members?
A2. The founding board members, who remain active on the board, are:
Rosa M. Dailey, President
Faith Tanney, PhD, Vice President
Andrew W. Zimmerman, MD, Scientific Advisory Chair
Susan L. Connors, MD, Board Member
Alan Ray, Board Member
Sydney Cousin EdD, Board Member
Advisor to the board:
Victor Broccolino, President and CEO, Howard County General Hospital
Q3. Are you seeking new board members?
A3. Yes, board development is one of our major priorities.
Q4. Where is your foundation located?
A4. Our foundation has a virtual existence at this time. We do not have an office or physical location.
Our board and planning meetings are most often held in a conference room at Howard County General Hospital, in Howard County, Maryland, and are hosted by Victor Broccolino, President of the hospital.
The foundation phone and fax numbers are maintained at the residence of the founder, Rosa Dailey, in Tucson, Arizona.
The foundation receives its official mail c/o Kennedy Krieger Institute in Baltimore, Maryland. The President and CEO of Kennedy Krieger Institute, Gary Goldstein, MD, allows our foundation to use the Kennedy Krieger address as a means of supporting our efforts. Our current official address is:
The Fetal Physiology Foundation, Inc.
c/o Kennedy Krieger Institute
707 North Broadway
Baltimore, Maryland 21205
Q5. Will this be a national or international foundation?
A5. We are in the process of building our Board of Directors and our Scientific Advisory Board. Our goal is to recruit members both nationally and internationally.
Q6. Why was the Fetal Physiology Foundation started?
A6. We wanted to focus scientific research on the causes of developmental disorders. It is becoming fairly well established that many developmental disorders begin during fetal life and occur in children who have no known genetic disorder. Several developmental disorders share behavioral characteristics suggesting there may have some common origins. In general, children and adults with these disorders have normal form but abnormal function; that is, they appear normal but function abnormally in one or more ways.
We wanted to take a different approach to conventional genetics in these disorders by identifying genetic vulnerabilities (subtle gene mutations) that are common in the general population but that, in a developing fetus, could create susceptibility to an environmental insult, from either within or outside the womb.
We also want to understand the effects of environmental and intrauterine changes from a transgenerational perspective: Can the interplay of otherwise normal but possibly vulnerable genes together with environment factors, change the function of the developing brain over time? And in turn, can that change be carried through to the next generation with similar or even different abnormal outcomes?
We believe we have an approach not widely represented in the scientific community that focuses on fetal life as the staging ground for developmental disorders and looks at changes over time in the intrauterine environment. These changes can alter fetal development and provide the basis for neurodevelopmental disorders.
Q7. Which developmental disorder is your organization interested in researching?
A7. We are interested in developmental disorders that are classified as neurodevelopmental disorders. They are believed to originate before birth, but do not have known genetic causes. These disorders include attention deficit hyperactivity disorder (ADHD), autism spectrum disorders (ASDs), speech and language impairments, schizophrenia, bipolar disorder, obsessive-compulsive disorder and Tourette syndrome. We are concerned with the genetic and environmental factors that have the potential to affect the developing brain before birth and either contribute to or cause these disorders.
Q8. Why is your approach not widely represented?
A8. The classic way of looking for the cause of a disorder is to look for a mutation in a gene, and to focus on single gene disorders that have behaviors in common with neurodevelopmental disorders, such as autism. Rett syndrome is an example of a disorder in which early behaviors and regression are similar to those in seen in autism. Investigating how the genetic abnormality works in Rett syndrome would, in conventional thinking, facilitate understanding of the genetic mechanisms responsible for autism. This approach “pares away at the rings of the onion” until the more complex nature of the disorder is understood. We do not believe this approach alone is sufficient, especially in complex disorders such as autism, schizophrenia and ADHD, in which multiple genes have been implicated over many decades of research.
Major government and private research organizations are obligated to disseminate their resources to cover a large research focus even within one disorder, such as autism. And in most cases, there is a heavy weight given to research that will provide for treatment or cure rather than prevention and cause.
It also seems to take time for original ideas to surface and become “popular” enough for public funding. One of the reasons that our approach is not widely represented is probably the current natural aversion to fetal research in our society, which carries over into the scientific community because of the manner in which research is funded. The field of genetic research is more acceptable because it has a long history and requires only blood samples. The urgency for a better understanding of basic brain development in fetal life is also not widely accepted at this time, even within the scientific community.
If we are correct in our approach to disorders like autism and related neurodevelopmental disorders, it will represent a new genre and focus in research that will eventually expand in the scientific community. While this was one of the goals for starting this foundation, there will always be a need for a focused research organization that can build on its expertise in this area; an organization that continually looks for potential risk factors in fetal development that could lead to developmental disorders. It will become especially important as the pregnancy environment continues to change through generations, mirroring the complexity of changes in our advanced society.
Q9. What is your primary purpose or goal?
A9. The goal of this foundation is to create a forum for both discussion and research related to the changes that can occur in the brain and other organs during fetal life, and to determine to what degree these changes are responsible for the developmental disorders that have no known genetic cause. We want to emphasize the need for basic neurological research into normal fetal development, to gain better understanding of the significance of the many changes in the intrauterine environment that have occurred during the past few decades.
This is a large undertaking for which we hope to create a representative research model that will grow this genre of fetal research in the future, in tandem with the many inevitable future changes to the intrauterine environment.
If we are successful, we have the potential to make a profound impact on the understanding of the causes of many developmental disorders.
Q10. What do you see as your overall niche with respect to research into developmental disorders?
A10. Our niche is the identification and understanding of the causes of developmental disorders that can arise from changes to fetal brain and organ development. So ultimately, you could say that we are weighted toward prevention rather than treatment. However, a better understanding of what causes a developmental disorder could have a significant impact on treatment methods, including the possibility of amelioration in the very early stages of life.
Q11. Part of your purpose is to promote discussion. Does this mean that advocacy is part of your mission?
A11. No. Unfortunately, the need for broad acceptance of an organization’s mission can often distract or even derail the mission. This has happened in many “single-disorder” organizations, even though the intent may have been to raise awareness and needed research money. We know that funding can be difficult for an organization that does not publicly promote its mission, but we also believe that inherent to our success is our ability to support meaningful discussion and research among scientists and institutions in the area of fetal development, without outside influence or distractions. The scientific contributions that may come from our endeavors will take time as well as money to develop. The results of our efforts are likely, for quite some time, to yield complexity rather than simple answers. Thalidomide, a drug used by pregnant woman in the 1960’s to treat morning sickness, caused limb malformation in many developing fetuses. While tragic, the cause and affect are straightforward. Developmental disorders like autism and ADHD are likely to arise from complex, interdependent and possibly even transgenerational factors. If we are to be successful, it should not be part of our mission to speak directly to the individuals affected by developmental disorders or their families. However, we are certain that our dedicated mission will benefit them more than words.
Q12. Autism is currently in the media spotlight. Is understanding the cause of autism an important part of your mission?
A12. Yes, but not exclusively, and the reason is not merely to broaden the scope of our organizational interests, but rather arises from our understanding of these disorders and the way they affect the developing brain. There are a number of developmental disorders that have increased in prevalence in the past several decades, the most recent disorder to have national attention is pediatric bipolar disorder, which is estimated to have had a forty-fold increase in prevalence in the last decade alone. Many developmental disorders like bipolar disorder, autism, ADHD, etc., share overlapping symptoms and do not have a clear genetic cause. Another common thread is that these disorders frequently cluster in families and more minor symptoms or “personality traits” characteristic of the disorder may exist in the parents or other family members of the affected person, though in a less severe and non-disabling form. These findings suggest that the “single-disorder” research approach that has been successful for many clearly genetic disorders, like Phenylketonuria (PKU) or Fragile X, may not yield the needed success in understanding the causes of these disorders. For the disorders in which we are interested, autism being one of them, there are either multiple genes implicated or an interplay with the environment and genes that is not clearly understood.
Our approach is to consider the common and overlapping symptoms of these disorders, in the context of the fetal environment, in an effort to find the unifying factors that lead to these disorders. In the case of autism, our research approach gives us the ability to step out of the argument as to whether vaccines are the sole environmental cause of autism and focus on the intrauterine environment to determine whether there are events well prior to birth that could have a profound impact in the way a child develops after birth.
Q13. A lot is being said about autism being caused by environmental factors, how do you see the environment causing developmental disorders?
A13. One characteristic that distinguishes us from other groups is the way in which we define environment. We are concerned with the intrauterine environment, the environment within which the fetus develops and which can be affected by not only what the mother is exposed to in her daily life, like pesticides and infections, but also fluctuations in her own hormone and neurotransmitter levels. We do not see the intrauterine environment as a single event or single disorder factor. The concept of the intrauterine environment takes on a myriad of complexity and raises what we believe to be some proximate questions about how these disorders have evolved over time and generations, combining many factors. Here are some representative questions we raise that form the basis of our research hypothesis:
- How has the environment of a pregnant woman changed over the past 4 to 5 decades (an era during which the prevalence of developmental disorders has increased significantly)?
- Which environmental exposures to a pregnant woman (exogenous) are transferred directly to a fetus (e.g., pesticides, heavy metals, toxins, etc.)?
- Are there transgenerational effects involved, i.e., was the physiology of the pregnant mother altered by an exposure (e.g., nicotine, pesticides, a medication, etc.) when she was in her mother’s womb, thereby changing her responses to environmental factors during pregnancy, and affecting her protective mechanisms for the fetus she is carrying?
- What are the effects of fluctuations in neurotransmitter and hormone levels in the mother on the developing fetus?
- What does the mother’s response to an infection do to the intrauterine environment and how could it affect the fetus?
- There is some evidence that autoimmune diseases, such as rheumatoid arthritis, are more prevalent in families of autistic children, and that a mother with a particular autoimmune disease, e.g., lupus, has an increased risk for having a child with a learning disability. By what mechanism does a mother with an autoimmune disorder have an increased risk of having a child with a neurodevelopmental disorder?
- Are there medications that can alter the wiring of the fetal brain as it develops, without affecting the form of the brain or leaving any other readily discernable changes?
- Does one environmental exposure in a fetus amplify the effects of another exposure at a later time in development or life?
- Is there a threshold of tolerance in fetal life for a single environmental factor? . . . multiple environmental factors?
The above are but a few questions that would form the basis of our approach to environmental influences during fetal life that have the potential to cause a developmental disorder.
Q14. Have you sponsored any activities relevant to your mission?
A14. We officially launched our foundation in November of 2006 with a symposium that was representative of our interests in research into the underlying causes of developmental disorders, and which was a great success. Kennedy Krieger Institute in Baltimore, Maryland cosponsored the symposium, entitled: Fetal Mechanisms in Neurodevelopmental Disorders, which was very well received by both participating researchers and observers. We invited 6 researchers with expertise in fetal brain development, genetics, neurodevelopmental disorders, and toxicology, who presented topics relevant to our research focus. Among the observers was Nancy Grasmick, the Maryland State Superintendent of Schools, who took the microphone to express her complete support for our foundation. As a spokesperson for the struggles of Maryland’s school systems in dealing with increasing numbers of children with neurodevelopmental disorders, she understands the need for research focused on the underlying causes and prevention of these disorders.
Topics presented at the symposium included:
Fundamental Mechanisms of Brain Development
Pat Levitt, Ph.D.
Maternal Adversity, Glucocorticoids and Life after Birth: Jumping Generations!
Stephen Matthews, Ph.D.
Plasticity and Injury in the Developing Brain
Michael Johnson, M.D.
How Exposure to Common Pesticides Can Damage the Developing Brain: Lessons Learned from Animal Studies with Chlorpyrifos and the Organophosphates
Theodore Slotkin, Ph.D.
Cerebral White Matter Development and the Risk for PVL
Hanna Kinney, M.D.
Teratogenic Alleles in Neurodevelopmental Disorders
William Johnson, M.D.
Stimulation of the Beta-2 Adrenergic Receptor and its Polymorphisms in Autism as an Example of an Effect on Fetal Physiology
Susan Connors, M.D. and Andrew Zimmerman, M.D.
These topics are very relevant to the type of research we would support.
At the end of the symposium, there was meaningful and spirited discussion about future directions for this particular focus in research among the scientists who presented their research topics and those who attended. All scientists and participants agreed that there is a need for an extensive study in the area of changes in fetal development during prenatal life that could lead to developmental disorders and that an organization dedicated to securing private funding was essential for continued progress.
Discussion specifically centered on the need to identify physiological changes in the brain that lead to developmental disorders for the purpose of:
- Prediction and prevention, if possible,
- Amelioration in the earliest stages of life where prevention is not possible and
- Treatment that more accurately targets the causes of the symptoms of these disorders.
The conference summary is published in the March 2008 issue of Pediatric Neurology.
Read the abstract
As part of our mission, we would like to continue to sponsor symposiums to encourage and support this area of research.
Q15. Are you planning any future symposiums?
A15. Yes. Our next symposium will be held on June 23, 2008 in conjunction with the Johns Hopkins School of Medicine Continuing Medical Education (CME) program. This symposium will be cosponsored by:
Kennedy Krieger Institute,
Baltimore, Maryland
and
National Institute of Child Health and Human Development (NICHD),
Bethesda, Maryland
Q16. Have you funded any research?
A16. We have not funded any research projects yet, as we are a new foundation.
Q17. Do you have a research agenda?
A17. We would like to start by funding small, innovative projects, the results from which could become the basis for larger, expanded studies. Eventually, we would be able to fund large, multi-center projects. The research would investigate changes that can occur during fetal brain development, which can then have the ability to affect the way a person will function later, from early childhood through adulthood.
We would like to expand research into genetic vulnerabilities that exist in the general population, and determine their significance with respect to increasing susceptibility to environmental factors in the developing fetus. We are also interested in epigenetic influences that can affect gene expression during fetal development.
The scope of our interests would encompass:
- Normal human fetal brain development;
- The timing during pregnancy in which environmental factors can disrupt fetal brain development and the brain regions that would be affected;
- The cell mechanisms by which environmental factors can influence prenatal brain development;
- Genetic polymorphisms or epigenetic factors that could facilitate abnormal brain development because of an environmental factor.
Q18. If you were to be successful in raising money to fund research, what kind of studies would you fund?
A18. Here are some examples of research projects we would fund:
- Map the normal development of neurotransmitter receptors, such as serotonin and catecholamines, over time in the human fetal brain.
- Conduct a maternal antibody study to detect cell signaling that results in lymphocytes of children with ADHD, autism, schizophrenia and bipolar disorder, after exposure of these cells to their mothers’ antibodies.
- Administer stress to pregnant rats; expose the offspring after birth to viral infections or environmental pollutants such as biphenyl-A or organophosphates, then look for brain and behavior abnormalities in childhood and adulthood.