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FASD Indiana FASD Prevention Taskforce

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1 FASD Indiana FASD Prevention Taskforce Working to Prevent Fetal Alcohol Spectrum Disorders Through High School and Middle School Curricula This presentation was designed for use in Upper Level High School Science Classes. NOTE TO INSTRUCTORS: Discussing alcohol use or pregnancy with teenagers may sometimes be difficult. Both can be sensitive subjects, particularly if an individual has been personally affected by either. Furthermore, given the frequency of fetal alcohol spectrum disorders (FASDs), it is very possible that one or more students may have a family history of, or be personally affected with, one of these conditions. It is also important to note that the features of FASDs are not unique to this group of conditions. Therefore, their diagnosis needs to be made by a trained professional who has the tools necessary to distinguish the features of fetal alcohol syndrome (or a related disorder) from those of other syndromes, or from traits that are strictly familial in nature.

2 FASD Indiana FASD Prevention Taskforce Fetal Alcohol Spectrum Disorders Why a person should NOT drink alcohol if she COULD get pregnant! INTRODUCTION OF THE TOPIC: Questions to pose to the class- Why do you think a person should not drink alcohol if pregnancy is possible? Why does this say “if she COULD get pregnant”? Exercise- An exploration of the students’ understanding of the following terms. This may be done by discussion or as a written exercise, and may work as an anticipatory set that allows you to assess the students’ previous knowledge. Fetal: relating to the fetus; the fetal period of human development occurs from 9 weeks onward. Alcohol: referring to drinks consumed that contain alcohol. Spectrum: referring to the wide range of effects of the alcohol. Disorder: referring to the fact that the effects constitute a medical condition that may be diagnosed by a physician.

3 Fetal Alcohol Spectrum Disorders (FASD)
Possible Diagnoses Fetal alcohol syndrome (FAS) Partial FAS (pFAS) Alcohol-related neurodevelopmental disorder (ARND) Alcohol-related birth defects (ARBD) + = Discussion points- FASDs include several different disorders. Fetal alcohol syndrome is characterized by a constellation of physical, cognitive and behavioral features. The other 3 conditions listed here, partial FAS, ARND and ARBD, have some of the features of classic FAS but not all of them. However, it is important to note these three conditions are not necessarily “milder” conditions. The brain damage and its consequences in a child with ARND can be just as significant as those of a child with full FAS. Question- What is the advantage of having a diagnosis? It facilitates the medical management for the affected individual, and helps the person to receive the appropriate services. It facilitates communication among those involved in the care of the individual (including physicians, caregivers, families, and teachers). It allows for increased awareness and understanding by those involved with the affected person. It also helps the affected person be more aware of why things are the way they are and what his/her strengths and limitations may be. FAE (fetal alcohol effects) is an older term used to describe the last three listed above.

4 On any given day in the United States…
FASD On any given day in the United States… Approximately 11,000 babies are born 1 of these babies is HIV positive 3 of these babies are born with muscular dystrophy 4 of these babies are born with spina bifida Exercise- Let’s do a little math. If this class lasts for 45 minutes, how many babies would be born with FAS in the United States during this class period? 1-2 babies. How about those with any fetal alcohol spectrum disorder? 3-4 babies. If 40,000 babies with a FASD are born each year in the U.S., how many will be born while you are in high school? 160,000. 10 of these babies are born with Down syndrome 20 of these babies are born with FAS 100 of these babies are born with a FASD From the Executive Summary of the IOM Report. FAS Community Resource Center.

5 The Prevalence of FAS and FASD
The prevalence of FAS is estimated to be about 1 in 500 to 1 in 1000 births The prevalence of FASD is estimated to be nearly 1 in 100 births Discussion points- Half of all pregnancies are unintended. Nearly half of year-olds in the US have had sex at least once (Alan Guttmacher Institute). 20% of sexually active teenagers become pregnant and approximately 80% of these are unintended (Alan Guttmacher Institute). More than 20% of pregnant women report alcohol use in the first trimester. The rate of binge drinking among pregnant women age 15 to 17 was 8.8%. Question to pose to the class- Why is it difficult for us to get an EXACT incidence of FAS and the other FASDs? Most women who drink alcohol during pregnancy do not report it. Many children with FASDs are no longer with their birth mother; therefore, it is difficult to get an accurate history of the pregnancy. It is reported that FAS is the LEADING known cause of mental retardation in the United States (www.nofas.org). Eustace LW 2003; Substance Abuse and Mental Health Services Administration; and the Centers for Disease Control and Prevention

6 FASD How much is too much? The more alcohol consumed during pregnancy, the higher the risk for adverse effects Binge drinking is particularly harmful! No amount of alcohol has been proven ‘safe’ to consume during pregnancy Every FASD is 100% preventable! Questions to pose to the class- What is a dose-response relationship? This refers to the level of effect a particular agent has on an individual or population, depending on the quantity of that agent. If there is a dose- response relationship, the more agent that is present, the greater the effect (and vice versa). What is another example of a dose-response relationship? Food and weight gain: the more a person consumes, the more weight he/she will gain. Why are FASDs 100% preventable? If a woman does not drink, her baby is not exposed to alcohol. If FASD is a poor outcome and it is 100% preventable, why does it continue to exist? Half of all pregnancies are unplanned. Women who are addicted to alcohol may not be able to stop drinking without help.

7 FASD What is a Drink? A Binge is four or more drinks on one occasion for a woman; five or more for a man A Drink is 12 ounces of beer, five ounces of wine, or 1.5 ounces of hard liquor Questions to pose to the class- What is common about all of these different drinks that allows them to be classified as a “drink”? They all contain the same amount of alcohol. What are other specific drinks, not shown here, that contain alcohol? Wine coolers Shots Others Note that some mixed drinks actually contain the amount of alcohol in 4-5 drinks!! Also, beers served in extra large glasses count as more than 1 drink. = =

8 The Effect of Alcohol on a Baby’s Development
FASD The Effect of Alcohol on a Baby’s Development Alcohol freely crosses the placenta from the mother to the baby Blood alcohol levels of the baby are equal to that of the mother, within minutes of consumption The critical period is the entire pregnancy Background information- The placenta is what connects the mother’s blood supply to that of the baby. It is essential for providing oxygen and nutrients to the growing baby. Consider showing a picture or diagram of the placenta and how this exchange takes place. Questions to pose to the class- What does it mean to say the blood alcohol levels of the baby are equal to that of the mother? What does the phrase “critical period” mean to you?

9 The Effect of Alcohol on a Baby’s Development
FASD The Effect of Alcohol on a Baby’s Development Brain and nervous system Heart Limbs Lips and palate Ears Eyes Discussion points- Alcohol can cause problems in several different ways: It can kill cells It can disrupt the ways certain cells develop, travel, or function It can affect blood flow to the placenta, which would then hinder the delivery of nutrients and oxygen to the developing baby (www.samsha.gov). Questions for discussion- Have you ever witnessed a person who has been drinking heavily? What did you see? The effects of alcohol on the brain of a mature adult have been clearly documented. How much more harmful do you think alcohol is on the brain of a baby early in development when it is still growing and the cells are making important connections for proper function? Look at the diagram on this slide. Why would it be logical for the effects of alcohol on the baby be the greatest in the first 8 weeks of the pregnancy? Because this is the period of time of greatest activity in the formation of the major organs and structures of the body. Development of the brain is occurring throughout the pregnancy, which means that alcohol exposure at any point may cause brain damage. Figure from

10 The Diagnosis of FAS Defined by four criteria:
Exposure to alcohol while in the womb Characteristic facial features Growth problems Involvement of the central nervous system (the brain) Question to pose to the class- Although many characteristics are similar among those individuals with FAS, why do those affected retain so much individuality? The genetic make-up of each person is different. Therefore, each person will metabolize alcohol differently and the specific effects and their severity will vary. Nutritional factors and the dose, pattern, and timing of alcohol use also affect the outcome.

11 FASD Facial Features: Smooth Philtrum and Thin Upper Lip
(little to no groove above upper lip) Thin upper lip Question to pose to the class- Why are the facial features alone not enough to diagnose someone with FAS? Because these features can be familial traits that are seen in individuals who have never been exposed to alcohol. These features are just “clues” to help a doctor make the diagnosis. NOTE: Although these features are associated with fetal alcohol syndrome, they may also be seen in people who do not have a FASD.

12 FAS Facial Features: Short Palpebral Fissures (Eye Openings)
FASD FAS Facial Features: Short Palpebral Fissures (Eye Openings) Question to pose to the class- Why are the facial features alone not enough to diagnose someone with FAS? Because these features can be familial traits that are seen in individuals who have never been exposed to alcohol. These features are just “clues” to help a doctor make the diagnosis. Eyes are measured from the outer corner to the inner corner

13 The Effect of Alcohol on Growth
FASD The Effect of Alcohol on Growth Alcohol consumption increases the risk for having a baby with growth problems After birth, exposed children may continue to have a decreased growth rate and subsequent short stature Questions to pose to the class- Why is growth deficiency a problem? Do you think that growth problems could be associated with other issues related to development? To be at your healthiest, you need to have adequate growth. Growth deficiency, therefore, is often associated with other developmental delays and medical issues. It is also important to know that children who are shorter than their peers may be so because it is familial- not related to an exposure to alcohol before birth! Discussion point before moving onto the next slide- So far, we have talked about several physical effects of a prenatal exposure to alcohol, including its effect on the development of the facial structures and on physical growth of the individual. Now, we are going to discuss the effects of alcohol on the part of the body that may have the most impact on the daily life of an individual with a FASD. What do you think this is? The brain. Day and Richardson, 2004, AJMG 127C:28-34.

14 Alcohol Affects Overall Brain Size
FASD Alcohol Affects Overall Brain Size Brain of a healthy baby Brain of a baby exposed to alcohol Discussion points- The brain damage that occurs while in the womb as a result of alcohol exposure has effects that persist throughout the life of a child with a FASD. The effects of alcohol on the developing brain include having a small brain that is not correctly formed (has structural abnormalities). Note that the brain on the right is significantly smaller than that on the left. In addition, you may be able to tell that the overall structure is different. The brain develops in a highly coordinated manner, and involves the formation, maturation, and migration of nerve cells. Any of these can be affected by alcohol use during development. Question to pose to the class- What do you think it means to have a small brain? The cells didn’t form correctly. The cells formed but then died off. Photo by Sterling Clarren, MD

15 Alcohol Affects Brain Structure
FASD Alcohol Affects Brain Structure Certain parts of the developing brain are highly susceptible to damage by exposure to alcohol Discussion points- Alcohol can kill cells or change their migration during development. It can also affect the connections between neurons, and alter the neurochemistry of the brain. Changes in brain function and structure reflect what part of the brain was developing at the time of exposure. During the first trimester, alcohol exposure interferes with the proliferation (formation), migration, and organization of nerve cells.

16 The Effect of Alcohol on the Corpus Callosum
FASD The Effect of Alcohol on the Corpus Callosum The corpus callosum is a transverse band of nerve fibers that connect the two hemispheres of the brain An underdevelopment of the corpus callosum is frequently reported in kids with a FASD Discussion points- The corpus callosum (call ō sum) is a band of nerve fibers that connect the right and left hemispheres of the brain. It is marked by the red line on this slide. It develops between the 12th and 16th weeks of gestation. It is the most important connection between the two hemispheres of the brain. Spadoni AD, et al. 2007

17 The Effect of Alcohol on the Corpus Callosum
FASD The Effect of Alcohol on the Corpus Callosum Normal Absent Corpus callosum abnormalities have been linked to deficits in attention, intellectual functioning, verbal memory, and executive and psychosocial functioning Discussion points- The images on this slide illustrate what the brain looks like on magnetic resonance imagining (MRI) when there is a normal corpus callosum (red line on left image) and when the corpus callosum does not develop (red arrow on the right image). Although complete absence of the corpus callosum is rare in kids with FASDs, a thin (or underdeveloped) corpus callosum has been frequently reported. “Intellectual function” refers to general mental capabilities. “Verbal memory” refers to ability to retain information presented orally. “Executive functioning” generally refers to activities relating to organization and decision-making. “Psychosocial functioning” refers to how well an individual interacts with his/her environment (socially, emotionally, etc.). Spadoni AD, et al. 2007

18 The Effect of Alcohol on the Hippocampus
FASD The Effect of Alcohol on the Hippocampus The hippocampus, which plays a critical role in memory formation, may also be affected in individuals with a FASD Discussion points- The hippocampus is located in the temporal lobes of the brain and has functions in consolidation of memories and retrieval of information from long-term memory. It is also believed to be involved in spatial learning abilities. Question to pose to the class- Given the function of the hippocampus, what are some difficulties an individual may experience if their hippocampus is underdeveloped? Spadoni AD, et al. 2007

19 The Effect of Alcohol on the Cerebellum
FASD The Effect of Alcohol on the Cerebellum The cerebellum, which is involved in motor abilities, balance, and sensory perception, may be smaller than average in affected individuals Discussion points- Located at the base of the brain, the cerebellum has functions related to motor control (movement), cognitive function, and sensory perception. The motor functions controlled by the cerebellum include posture, balance and coordination. The effect of cerebellar abnormalities include balance problems, tremors, and shifting attention from one topic/task to another. As you may note, the immediate effect of alcohol use in an adult can be very similar to the long-term damage in an exposed baby. Spadoni AD, et al. 2007

20 The Effect of Alcohol on the Basal Ganglia
FASD The Effect of Alcohol on the Basal Ganglia The basal ganglia are a group of nerve cells (including the caudate and lenticular nucleus circled on the diagram) located deep inside the brain They are involved in movement and procedural learning The basal ganglia are smaller than expected in kids with a FASD Discussion points- The basal ganglia are composed of five “nerve cell nuclei.” The caudate nucleus The nucleus accumbuns The putamen The globus pallidus The subthalamic nuclei Because of the parts of the brain they are connected to, they are intimately related to movement and procedural learning (“how to” learning”). They are also involved in cognitive (intellectual), affective (emotional), and motivational functions. Spadoni AD, et al. 2007

21 What is seen when the brain has been affected by exposure to alcohol?
FASD What is seen when the brain has been affected by exposure to alcohol? Discussion points- Since the brain controls essentially every cognitive and motor function in the body, it is reasonable to predict changes in all types of brain function. This, however, can be highly variable and kids with FASDs can display a wide range of features related to brain function. Student activity- Using the information learned about the structural changes in the brain, students could answer the question on this slide, compare lists, and discuss their answers.

22 Prenatal Alcohol Exposure and the Central Nervous System
FASD Prenatal Alcohol Exposure and the Central Nervous System Cognitive deficits or developmental discrepancies Low IQ (including mental retardation) Significant developmental delays Specific learning disabilities (esp. with math and/or visual spatial deficits) Discrepancy between verbal and non-verbal skills Slowed movements or reaction (slow information processing) Discussion points- The central nervous system includes the brain and spinal cord. Mental retardation is defined as having an IQ of less than 70. The average IQ of a typical teenager is 100, with most having (IQs between 80 and 120). Question to pose to the class- How would having the disabilities listed on this slide affect a child in school?

23 Prenatal Alcohol Exposure and the Central Nervous System
FASD Prenatal Alcohol Exposure and the Central Nervous System Executive functioning deficits Poor organization, planning, or strategy use Concrete thinking Lack of inhibition Difficulty grasping cause and effect Inability to delay gratification Difficulty following multi-step instructions Poor judgment Inability to apply knowledge to new situations Questions to pose to the class- Is it possible for individuals who do not have a FASD to have these characteristics? Absolutely. Why do we associate them with FASDs? This combination of disabilities is particularly common in someone who has a FASD.

24 Prenatal Alcohol Exposure and the Central Nervous System
FASD Prenatal Alcohol Exposure and the Central Nervous System Motor functioning delays or deficits Delayed motor milestones Difficulty with writing or drawing Clumsiness Balance problems Tremors Poor dexterity Poor suck in infancy Discussion points- Because of the motor difficulties these kids face, most receive both physical and occupational therapies beginning in infancy or early childhood.

25 Prenatal Alcohol Exposure and the Central Nervous System
FASD Prenatal Alcohol Exposure and the Central Nervous System Attention and hyperactivity Inattentive Easily distracted Difficulty calming down Overly active Difficulty completing tasks Trouble with transitions May have “on” and “off” days Questions to pose to class- Do people without FASDs have some of these behaviors at times? Of course. What other diagnoses might share some of these outcomes? Attention deficit/hyperactivity disorder (ADHD) Autism spectrum disorders

26 Prenatal Alcohol Exposure and the Central Nervous System
FASD Prenatal Alcohol Exposure and the Central Nervous System Social skills problems Lack of stranger fear Naiveté and gullibility Easily taken advantage of Inappropriate choice of friends, preferring younger friends Immaturity Superficial interactions Inappropriate sexual behaviors Difficulty understanding the perspective of others Student activity- Finish the statement, “These problems remind me of…..” A common response would be that these social skill problems are the normal difficulties for a young child. For example, a teenager with a FASD may be as naïve or gullible as a 6-year-old who was never exposed to alcohol.

27 Prenatal Alcohol Exposure and the Central Nervous System
FASD Prenatal Alcohol Exposure and the Central Nervous System Other Sensory problems Pragmatic language problems (difficulty reading facial expressions) Memory deficits Difficulty responding appropriately to common parenting practices Questions to pose to the class- How do you think the problems listed on the last few slides would effect a person’s ability to function in his/her home environment? School environment? Work environment? What specific type of environments might magnify the problems listed on the last few slides? Loud environments Environments with a lot of visual distractions Crowded environments

28 To summarize, differences in brain function may appear as:
Normal FAS To summarize, differences in brain function may appear as: Taking longer to process information Problems remembering things Difficulties with generalizing, forming associations, and understanding abstract concepts Problems understanding consequences or cause-and-effect Discussion points- This slide serves as a nice summary about what we see as a result of the changes in the brain of a person with a FASD. Questions to pose to the class- What words would you use to describe the brain on the left? Organized Structured Efficient Fast Others? What words would you use to describe the brain on the right? Disorganized Unstructured Inefficient Slow Malbin D. 2002

29 A teenager with a FASD, who is 18 years old, may function at the level of a child or adolescent
Emotional maturity Comprehension Social skills Concepts of money and time Living skills Reading ability Physical maturity 6 years 7 years 8 years 11 years 16 years 18 years Discussion points- While an 18-year-old with a FASD may look his age, and even speak at a level consistent with his age, he may be significantly delayed in the areas listed on this slide. For example, his daily living skills (being able to get ready in the morning, fix himself a meal, etc.) may be equivalent to those of a 6th grader, his concepts of money and time may be equivalent to those of a 3rd grader, and his emotional maturity may be equivalent to that of a 1st grader. Questions to pose to the class- If an 18-year-old has the living skills of an 11-year-old, what might he/she be able to do? read, write… What might he/she NOT be able to do? drive, hold a job… Skill Developmental Age Equivalent Adapted from:

30 Primary vs. Secondary Disabilities
FASD Primary vs. Secondary Disabilities Primary disabilities result from brain damage due to the alcohol exposure Secondary disabilities develop over time due to lack of intervention and unmet needs They are believed to be preventable Discussion points- What we have been talking about on the last 10 or so slides are primary disabilities, or those problems that are a direct result of brain damage caused by alcohol exposure. Now, we are going to discuss secondary disabilities, or those problems that will develop over time if the affected person is not having his/her needs met or is not getting the appropriate interventional services. The focus of support and intervention is to reduce the secondary disabilities. These are believed to be preventable. To help explain the concept of secondary disabilities, you could create an analogy, such as an athlete who breaks his/her leg. In this situation, what are the primary and secondary disabilities? Primary: pain, decreased mobility… Secondary: persistent pain, permanent damage to the leg, long-term mobility issues…

31 Secondary Disabilities in FASD
Mental health issues Disrupted school experiences Inappropriate sexual behavior Trouble with the law Confinement in jail or treatment facilities Alcohol and drug problems Dependent living Employment problems Discussion points- Mental health issues include: anxiety, attachment disorder, ADHD, conduct disorder, depression, eating disorders, oppositional defiance disorder, and others. Disrupted schooling includes: dropping out, expulsions, and suspensions. Inappropriate sexual behaviors include: compulsions, inappropriate sexual advances and touching, obscene telephone calls, promiscuity, and voyeurism. Trouble with the law includes: assault, child molestations, running away, shoplifting, theft, and others. So, how common are these disabilities?

32 Secondary Disabilities
Discussion points- The impact of these problems on a person’s daily life is significant. It is also not limited to the life of the affected individual; the loved ones, caregivers, friends, and educators are also dramatically impacted. Student activities- Have the students create factual conclusions using the data in this graph. For example, “Among those individuals with a FASD, just over 40% have ‘trouble with the law’.” You may also ask specific questions using the data. For example, “Which 3 identified outcomes are the most frequent?” “In the population of individuals who are ages 6-51, what disability is the least frequent?” Streissguth AP, et al. 2004

33 The Long Term Consequences of FAS
FASD The Long Term Consequences of FAS Only 3% of children lived with biological mother Poor behavior was common Average academic function was between 2nd and 4th grade Independent living was uncommon among adults with FAS Question to pose to the class- Ask students to reflect on what they have learned in this lesson and complete the following statement: “At first I thought……, but now I think…..” Streissguth et al. 1991

34 FASD For More Information Fetal Alcohol Spectrum Disorders: Trying Differently Rather Than Harder, by Diane Malbin, MSW. Available at Fetal Alcohol Syndrome: A Parents Guide to Caring for a Child Diagnosed with FAS, by Leslie Evans, MS, et al. Available for download at Fetal Alcohol Syndrome, Fetal Alcohol Effects: Strategies for Professionals, by Diane Malbin, MSW. Hazelden Foundation, Center City, MN. Fetal Alcohol Syndrome: Practical Suggestions and Support for Families and Caregivers, by Kathleen Tavenner Mitchell, MHS, LCADC, and the National Organization on Fetal Alcohol Syndrome. Available at

35 FASD References Alan Guttmacher Institute. Facts on American teens’ sexual and reproductive health. The Centers for Disease Control and Prevention. Fetal alcohol spectrum disorders. Day NL and Richardson GA An analysis of the effects of prenatal alcohol exposure on growth: A teratologic model. American Journal of Medical Genetics Part C. 127C:28-34. Eustace LW, et al Fetal alcohol syndrome: A growing concern for healthcare professionals. Journal of Obstetric, Gynecologic, and Neonatal Nursing. 32: The Institute of Medicine Report on FAS. IOMsummary.htm Lupton C, et al Cost of fetal alcohol spectrum disorders. American Journal of Medical Genetics Part C. 127C: Mattson SN, et al. Teratogenic effects of alcohol on brain and behavior. National Institute on Alcohol Abuse and Alcoholism. arh25-3/ htm Spadoni AD, et al Neuroimaging and fetal alcohol spectrum disorders. Neuroscience and Biobehavioral Reviews 31: Streissguth AP, et al Fetal alcohol syndrome in adolescents and adults. Journal of the American Medical Association. 265(15): Streissguth AP, et al Risk factors for adverse life outcomes in fetal alcohol sydnrome and fetal alcohol effects. Developmental and Behavioral Pediatrics 25(4): Substance Abuse and Mental Health Services Administration Fact Sheets.

36 FASD Helpful Websites National Organization on Fetal Alcohol Syndrome- Fetal Alcohol Syndrome, Education and Training Services, Inc.- The FASD Center for Excellence, Substance Abuse and Mental Health Services Administration- FASlink- The Arc- The Centers for Disease Control and Prevention-

37 FASD Indiana Resources The Fetal Alcohol Syndrome Center of Indiana - Indiana University Medial Center 975 West Walnut Street, IB 130 Indianapolis, IN Phone:   Fax:    Provides diagnosis, education and patient advocacy for those affected with prenatal alcohol exposure. CNS - Center for Neurobehavioral Sciences E. State Ft. Wayne, IN Phone:   Toll Free: Provides therapy, education and patient advocacy for those affected with prenatal alcohol exposure. Organizes a support group for parents and caregivers (and other interested parties) of those with a FASD.

38 FASD Indiana Resources Indiana Department of Health - IN Perinatal Network (IPN), Prenatal Substance Use Prevention Program (PSUPP) 2 N Meridian Street; Indianapolis, IN Phone: Fax: Referrals and early intervention for substance-using pregnant women. Training for professionals. Indiana Protection and Advocacy Services N Keystone Avenue, Suite 222, Indianapolis, IN Phone: or        Fax: Statewide agency for persons with developmental disabilities.

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40 Slides developed by: Lisa J. Spock, Ph.D., C.G.C.
Gordon Mendenhall, Ed.D. Assisted by: David D. Weaver, M.D. Becky Kennedy, M.Ed. James M. Ignaut, M.A., M.P.H., C.H.E.S. Supported by: Indiana University School of Medicine Indiana State Department of Health Indiana Department of Education University of Indianapolis


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