“Enjoy great science!” said Aaron Bowman, Ph.D., as he opened the Second Annual VKC Science Day, welcoming 225 graduate students,

postdoctoral fellows, faculty, and staff to the day-long January event. Bowman,assistant professor of neurology, chaired the Planning Committee. “We cometogether from vastly different disciplines, crossing disciplinary boundaries.”

PostersOver 110 posters were presented by graduate students and postdoctoral fellowsacross three broad themes, each chaired by a member of the PlanningCommittee: Cellular and Molecular Neuroscience, Kevin Ess, Ph.D., M.D.,assistant professor of neurology; Clinical, Behavioral, and InterventionResearch, Courtney Burnette, Ph.D., assistant professor of pediatrics; andSystems Neuroscience, Daniel Polley, Ph.D., assistant professor of hearing andspeech sciences. Theme chairs recruited 29 VKC investigators and members asjudges. Posters represented labs of 52 VKC researchers.

From abstracts submitted, each theme chair selected one poster to bepresented orally in the afternoon plenary session. Prizes in each area werepresented by Vanderbilt Provost and Vice Chancellor for Academic AffairsRichard McCarty, Ph.D., and Elisabeth Dykens, Ph.D., VKC interim director. See sidebar (p.2) for presenters and prize recipients.

“I appreciated the opportunity to see so many researchers with differentbackgrounds collaborating well,” said one participant. “I found some branchesof research similar to mine, giving me some inspiration and opening my eyes.”

Another commented, “Interacting with other students and researchers gaveme better insight into my own research.”

Poster presenters are eligible to apply for VKC Travel Grants to assisttrainees and fellows with costs of attending scientific meetings where they arepresenting their research.

Developing comprehensive state plans to improve autism identification andservice systems was the goal of diverse teams of over 80 key stakeholders

from Tennessee, Kentucky, North Carolina, and South Carolina who met inNashville in January at the Act Early Regional Summit.

This Region 4a Summit was one of a series of regional summits jointlysponsored by the National Center for Birth Defects and DevelopmentalDisabilities (NCBDDD) of the Centers for Disease Control and Prevention(CDC) and the Maternal and Child Health Bureau at Health Resources andServices Administration, and facilitated by the Association of University Centerson Disabilities (AUCD).

“In these Regional Summits, we’re bringing together key state leaders,” saidGeorge Jesien, AUCD executive director. “The aim is to enhance relationshipsand collaborations among these key stakeholders and their organizations. It is aforum to share information on the opportunities,

Act Early Regional SummitBy Jan Rosemergy

Asingle gene variant may be responsible for both autism and gastrointestinal (GI)

disorders in some children, according to anew Vanderbilt Kennedy Center study.The study “Distinct Genetic Risk Based onAssociation of MET in Families With Co-Occurring Autism and GastrointestinalConditions,” published in Pediatrics, suggeststhat disrupted MET signaling may contributeto the co-occurring medical conditions insome families.

It is well-known that GI conditions arecommon among individuals

MET Gene Linked To Autism,GI DisordersBy Craig Boerner

Continued on page 3

Number 24 Spring 2009 Vanderbilt University

Best Buddies—Greatest WeekEver

Telling StoriesThrough Songs

University Centerfor Excellence—Outreach EffortsEnter Religious and SpiritualCommunities

4 8 11TRIAD—Studying SocialInteraction

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Tennessee Act Early Team members at Region 4a Act Early Summit

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LeadershipAssistant Vice Chancellor for Research Susan Wente,Ph.D., professor and chair of cell and developmentalbiology, opened the morning session. Shecommended the Vanderbilt Kennedy Center “forsetting the standard for research and practice indevelopmental disabilities for more than 40 years,and for the collaborative spirit among faculty,students, and staff, which sets it apart.” Sheemphasized that Vanderbilt has a responsibility “toprepare tomorrow’s leaders in science, which iscritical to the greater world, perhaps even more so inthese economically challenging times. The VanderbiltKennedy Center is strongly positioned to play a rolein rising to that challenge, preparing leaders who cantranslate science into practice and public policy.”

Communication and Down Syndrome“Communication and Language InterventionWith Children With Down Syndrome” was thetopic of the keynote address by Paul Yoder, Ph.D.,professor of special education. Yoder’s long-termresearch program on communicationdevelopment and intervention is distinguished notonly by careful research designs, carried outmeticulously, but also by incorporation of brainimaging methods, specifically event-relatedpotentials to speech as a means to predictingresponse to intervention. One goal of this line ofERP research is to be able to predict which typesof intervention may be most effective forindividual children across different disabilities.

Children with Down syndrome have particularproblems with communicating requests, grammar,and speech intelligibility, said Yoder. Because theytend not to talk as much as their typically developingpeers, research has demonstrated the benefit of using

routines and topic-continuing questions to help them talk more often during therapy.

Doing so provides more opportunities to use adultresponses that teach language through grammaticaland phonemic recasts. However, ERP imagingsuggests that inefficient speech processing mayimpair children’s ability to benefit even fromgrammatical and phonemic recasts. Current work isexamining whether children with ERP-measuredinefficient speech processing benefit more fromalternative treatments than from grammatical andphonemic recasts.

Yoder’s research colleagues include Steve Warren(U Kansas), Stephen Camarata (VKC/VU), Marc Fey(U Kansas), and Dennis Molfese (U Louisville).Research funding includes NICHD, NIDCD, andHobbs Discovery Grants.

Music and Williams Syndrome“Music Magnetism: An fMRI Study of MusicProcessing in Williams Syndrome” was presented byTricia Thornton-Wells, Ph.D., VKC postdoctoralfellow in the Biobehavioral Interventions TrainingProgram, an NIH Roadmap initiative.

Individuals with Williams syndrome (WS) whoattend the annual VKC Music Camp are invited totake part in research, since combining services,training, and research is a hallmark of VKCprograms. Thornton-Wells has conducted severalstudies with the campers, initially on musicperception, and now on auditory perception more generally.

In a series of studies, Thornton-Wells hasinvestigated how musical interest, a phenotypic

strength, may relate to emotion processing associatedwith nonsocial anxiety and fears, a phenotypicweakness, and whether some basic auditorysensitivity may be giving rise to both aspects of thissyndrome. Individuals with WS report having vividvisual imagery when listening to music. Findings infMRI studies in WS indicate that early visual areasare activated by simple sounds. Thornton-Wellshypothesizes visual imagery experienced may be away of making sense of extrasensory stimulation. Afuture research question is whether this is a result ofatypical neural functioning or perhaps alsoatypical organization.

Multiple VKC collaborators on this research,

funded primarily through internal Vanderbilt grantprograms, include Elisabeth Dykens, Elizabeth Roof,Sasha Key, John Gore, Adam Anderson, andRandolph Blake.

Research Helps FamiliesAt the Day’s conclusion, Elisabeth Dykens, VKCinterim director, applauded the broad-based basicand clinical research presented. “Everyone deservesawards for such amazing work,” she said.

Vanderbilt Provost McCarty thanked trainees,fellows, and faculty. “What you’re doing is soimportant. You’re a vote of confidence in the future.”

“The Vanderbilt Kennedy Center is more thanresearch,” he said. “There are families who probablycouldn’t make it without the Center’s services. It maynot be obvious to you if you’re working in a lab thatultimately your work is helping families. That’s whythe Kennedy Center is such an important part ofVanderbilt University. It is not restricted to a singleschool but is a truly transinstitutional enterprise. Allresearch poster presenters are truly prize winners.”

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VKC mentors are noted parenthetically

Cellular and Molecular Neuroscience AwardsRichard Gustin, Predoctoral Trainee (Colbran)Calcium-Calmodulin Dependent Kinase II (CaMKII)David Lund, Predoctoral Trainee (Blakely)Acetylcholine Release in Choline TransporterHeterozygous Mice Is Supported by Barium andStrontium as Well as CalciumA. J. Baucum, Postdoctoral Fellow (Colbran)Caveats of Proteomics Approaches in Identifying NovelSpinophilin Interacting ProteinsBrent Thompson, Postdoctoral Fellow (Blakely)Beyond Prozac: Generation and Characterization ofSSRI Insensitive Transgenic Mice

Clinical, Behavioral, and Intervention Research AwardsRobin Jones, Predoctoral Trainee (Conture)Emotional Reactivity and Regulation in ChildhoodStutteringNatasha Matthews, Postdoctoral Fellow (Park)Interaction Between Working Memory Load andGesture Imitation Ability in SchizophreniaLeslie Dowell, Predoctoral Trainee (Wallace)Changes in Unisensory and Multisensory TemporalProcessing in Autism Spectrum Disorders

Systems Neuroscience AwardsAyan Ghoshal, Predoctoral Trainee (Ebner)Early Sensory Deprivation Blocks the Development ofNeuronal Synchrony in Barrel CortexLisa de la Mothe, Postdoctoral Fellow (Hackett)Connections of the Parabelt Auditory Cortex in theMarmoset MonkeyJeremiah Cohen, Predoctoral Trainee (Schall)Timing of Target Selection Between Visual Cortex andFrontal Eye Field

Undergraduate Award Bryan Cawthon (Ess)Requirement of the Tsc1 Gene for GABAergicInterneuron Formation

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Tricia Thornton-Wells, Postdoctoral Fellow in theBiobehavioral Intervention Training Program, presented“Music Magnetism: An fMRI Study of Music Processing inWilliams Syndrome.”

Aliya Frederick presented a poster on effects of in uterococaine exposure on the brain.

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Research Poster Awards

Celebrating VKC Sciencefrom page 1

Director’s Message

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challenges, and barriers for families and childrenwith autism spectrum disorders (ASD) andrelated disabilities. The emphasis is on earlyidentification, assessment, diagnosis, andintervention. Early identification is essential notjust for autism but also for other developmentaldisabilities. As we improve systems for autism,we are improving systems for all children.”

The Vanderbilt Kennedy Center and theUniversity of Tennessee Boling Center forDevelopmental Disabilities were the Summit localhosts and were instrumental in forming theTennessee team, with the support of theGovernor’s Office of Children’s Care Coordination(GOCCC). Both are University Centers forExcellence in Developmental Disabilities (UCEDDs)and both have Leadership Education inNeurodevelopmental Disabilities (LEND) programs.UCEDDs and LENDs are key players in thenationwide effort to enhance the identification,assessment, service coordination, and provision ofservices for children with ASD and otherdevelopmental disabilities.

State teams included parents of children withASD and members of family autism organizations;representatives of state departments of education,health, developmental disabilities, and social services;

and university-based professionals from diversedisciplines. National organizations and federalagencies represented included Easter Seals, Inc., theAssociation of Maternal and Child Health Programs,the National Professional Development Center, andthe National Conference on State Legislatures.

The Tennessee team of 22 members chose totarget four activities: continuing team meetingsto implement its plan, supporting familyparticipation in the improvement and expansionof the ASD service system, promoting statewide public awareness using the CDC ActEarly materials, and training preservice

professionals and community professionals. “The Summit was an exciting opportunity to

come together with key stakeholders inTennessee and their counterparts in our regionto share, discuss, and learn from each other,” saidTerri Urbano, M.P.H., Ph.D., LEND director.

Under the leadership of Fred Palmer, M.D.,UT Boling Center director, and in collaborationwith the GOCCC, the Tennessee team met inadvance of the Summit and developed a visionstatement and inventoried state resources.

By the Summit’s conclusion, each state teamhad identified and prioritized activities toachieve their vision and designated individualsto lead those activities. States will report theirprogress periodically through their UCEDD andLEND programs to AUCD and NCBDDD.

John Shouse, a Board member of theAutism Society of Middle Tennessee, commented,“This is the first time in almost a dozen years as aparent and advocate that I can remember havingsuch a gathering of key decision-makers in one place,with a singular focus on the question of how we can‘advance the ball’ for autism clinical and diagnosticservices across Tennessee for children with or at riskfor an autism spectrum disorder.”

For information on the Act Early RegionalSummits, see the Summits link at www.aucd.org.For information about the Tennessee Act Early Team,contact jan.rosemergy@vanderbilt.edu, (615) 322-8238.

Act Early RegionalSummit from page 1

MET Gene from page 1

UCEDD and MIND trainees and postdoctoral fellows served as Summitnotetakers while gaining experience in public policy planning: (left to right) Colby Butzon (UT psychology), Meghan Burke (VU specialeducation), Kjuanda Reynolds (UT speech-language pathology), andElisabeth Wallace (VU audiology)

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with autism, but notknown if co-occurringGI conditionsrepresent a uniqueautism subgroup.

Some speculatethat GI dysfunctionimpacts braindevelopment, or thataltered nervous systemdevelopment affects GIfunction. The METprotein participates in both brain

development and GI repair, suggesting that disruption of MET signaling maycontribute to both medical conditions.

A total of 918 individuals from 214 Autism Genetics Resource Exchange familieswere studied, each with a complete medical history including GI condition report.Researchers concluded that a functional genetic variant in the MET gene is morestrongly associated with autism specifically in those families where an individual hadco-occurring autism and a GI condition.

Lead author Daniel Campbell, Ph.D., research assistant professor ofpharmacology, said that the research is mounting evidence that the broad term“autism” will soon be divided into separate, more specific categories.

“For too long, people have been debating the validity of GI problems in childrenwith autism,” said co-author Pat Levitt, Ph.D., Annette Schaffer Eskind Chair andprofessor of pharmacology. “GI disorders don’t cause autism. Autism is a disorder ofbrain development. However, our study brings together genetic risk for autism andco-occurring GI disorders in a way that provides a biologically plausible explanationfor why they are seen so often together.”

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Pat Levitt and Daniel Campbell

For the Vanderbilt Kennedy Center, now is atime of change and renewal. The Center is 44

years old, begun in 1965 as one of our nation’soriginal 12 Intellectual and DevelopmentalDisability Research Centers (IDDRCs). Today, weare an IDDRC and more, changing and growingevery day. As I write, we learned last week thatour application for the IDDRC 5-year renewalwas very favorably reviewed by the EuniceKennedy Shriver National Institute of Child

Health and Human Development. Yet even as we celebrate, we areplanning our next steps.

Faculty are busily submitting grants to expand core research servicesand programs through the American Recovery and Restoration Act.

VKC TRIAD joins the nation in leading a variety of activities relatedto Autism Awareness Month.

Working with our Community Advisory Council and state andcommunity partners, the VKC UCEDD is developing a 5-year plan forits competitive renewal through the Administration on DevelopmentalDisabilities.

The VKC LEND is implementing new expanded training programsin autism and in pediatric audiology.

Several key ingredients contribute to these successes. First, we are auniversity-wide institute of Vanderbilt University, which continues toenthusiastically support the Center’s research,

The Work Ahead

Elisabeth Dykens, Ph.D.

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“When a child is diagnosed with a disability,the first place the family turns is to their

doctor,” said a parent in a focus group on disability,religion, and spirituality held at the VKC UCEDDlast year. “The second place many people turn is totheir spiritual community leaders, and that meansthese leaders need to be prepared to have aconversation with those families.”

The new VKC Disabilities, Religion, andSpirituality Program (DRSP) aims to providetraining to current and future religious and spiritualleaders and educators, to support individuals withdisabilities and families as they give expression totheir religion and/or spirituality, and to encouragedisability service providers to consider the religiousand spiritual interests of individuals they serve.Activities include conducting research, meetingservice and technical assistance needs, anddeveloping and disseminating educational materialsand best practices that encourage connectivity andindividual, family, and community well-being.

The VKC UCEDD is secular; it is not affiliatedwith a particular religious thought or spiritualexpression. This allows the DRSP’s endeavors andeducational materials to be ecumenical in nature andthus accessible for all religious and spiritualcommunities and disciplines. Its activities areinformed by 40+ years of experience in disabilityresearch, theory, and practice. Since religiousparticipation and spiritual expression are quality oflife issues, for many individuals, the DRSP is anatural fit within the VKC UCEDD.

Training Future LeadersWith a grant from the Vanderbilt Center forMedicine, Health, and Society, the DRSP reachedacross campus to the theological field educationoffice of Vanderbilt Divinity School. Ministerialstudent Sue Francis, who was a pediatric nurse inher “former life,” completed an academic year-long internship assisting with the direction of theDRSP. Her belief that individuals with disabilitiesand their families should have access tocommunities of faith, should they so choose, ledher to write her master’s thesis as a call toreligious leadership to mediate the relationshipbetween “the church” and persons withdisabilities.

“I like to think communities want to includeeveryone,” said Francis. “I believe that most want to,but I think often they might be afraid to, or unsure

of how to, or of what comes next once they have truly welcomed everyone to the table.”

One way to address the gap in what religious andspiritual leaders are prepared to address with regardto disabilities is to reach out to them prior to theirprofessional congregational placements. During arecent UCEDD meeting of religious leaders,educators, and students, only 3 out of the 25 or someeting participants had received any kind ofdisability-related training during their educations,and even that training was limited. By providingtraining opportunities and placements for futurereligious and spiritual leaders through the UCEDD,that essential, yet missing, piece of their educationmay be addressed.

Congregational SurveyA primary DRSP activity, with which Francisassisted, has been the development of an interfaithstatewide survey that asks religious leaders andeducators, individuals with disabilities and theirfamilies, and congregation members about theirexperiences with inclusion in religious andspiritual communities.

Survey questions explore barriers toparticipation that were well-defined by PeabodyCollege alumnus, Erik Carter, Ph.D., in IncludingPeople With Disabilities in Faith Communities: AGuide for Service Providers, Families, & Congregations(Brookes, 2007). Carter says individuals withdisabilities and their families might not feel welcomein a community if architectural, attitudinal,

communication, programmatic, and/or liturgicalbarriers are present. Survey findings should provehelpful in developing practical tools forcongregations. Findings will be reported in groupform and disseminated in Fall 2009.

Technical Assistance In February, William Gaventa, M.Div., directorof community and congregational supportsand associate professor of pediatrics at theElizabeth M. Boggs Center on DevelopmentalDisabilities, Robert Wood Johnson MedicalSchool, visited the VKC to deliver a publiclecture and participate in small groupdiscussions with families, disability serviceproviders, religious educators, leaders, and students.

Gaventa’s talk, “Where Personal, Professional,and Communal Ethics Meet: The Challenge andPromise of Inclusive Spiritual Supports WithPeople With Developmental Disabilities andTheir Families,” was a meditation on the parallelsthat may be drawn between fundamentalspiritual questions and values at the heart ofdisability services.

Gaventa noted that the spiritual questions ofidentity, purpose, and community—“Who am I?”“Why am I?” and “Where do I belong?”—areremarkably similar to values of independence,productivity, integration, and self-determination thatmotivate the work of disability service providers. Hechallenged attendees to embrace their capacity tojourney with others, and not to shy away from thetough ethical and spiritual questions that disabilitymay raise.

While discussing the topic of full inclusionduring a meeting of religious and spiritual leaders,educators, and students, Gaventa introduced thepromise of radical hospitality.

“Congregations must be socially engaged andreaching out to the very people who may appearto be out of their reach,” said Gaventa. “This is ajustice issue, and religious bodies, at their best,are skilled at addressing injustices. When religiousleaders can engage a kind of radical hospitalityand fully include individuals with disabilities andtheir families, and I mean an integrated type ofparticipation, grace will transform their ministryinto one of ministering with rather than one ofministering to.”

For information, contact Courtney Taylor, M.Div.,courtney.taylor@vanderbilt.edu, (615) 322-5658,toll-free (866) 936-8852.

Vanderbilt Kennedy Center for Excellence inDevelopmental Disabilities

Outreach for Religious and Spiritual SupportBy Courtney Taylor

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Treatment and Research Institutefor Autism Spectrum DisordersSer v ices , Tra ining, and Research

for Au t i sm Spec t rum Disorders

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A“castle” is built for young children. Ithas a yellow room and a green room,

and both have books, puzzles, and toys.The yellow room has someone who readsthe books aloud, plays with toys, and workspuzzles. The green room just has books,puzzles, and toys. Will typically developingchildren prefer the yellow room, withsomeone to play with? Will children withautism spectrum disorders (ASD) prefer thegreen room, with just the toys?

The scenario just described will be thethird stage in a set of studies using thebehavior paradigm of “conditioned placepreference.” The studies are aimed atanswering the question: Is social interaction aversiveor not motivating for children with ASD?

The project is being conducted by BarbaraThompson, Ph.D., postdoctoral fellow inpharmacology. What’s unique is that the studyinvolves testing in children the paradigm ofconditioned place preference, which has previouslyonly been used in animal behavioral research.

“The strength of the paradigm,” Thompsonexplained, “is that it allows us to distinguishwhether something is reinforcing, not reinforcing,or aversive.”

There are two main hypotheses about socialinteraction in children with ASD: one that it is notreinforcing, and the other that it is aversive.

“From a clinical perspective, it’s really importantto get at the difference because interventionstrategies would be different if social interaction isnonreinforcing versus aversive,” Thompson said.

Thompson indicated that the study also isimportant from a biological perspective in that the brain circuitry that underliesnonreinforcing versus aversive behavior isdifferent. “If we knew where to look in

the brain, we could begin to tease outthe biological signaling circuits.”

The study will proceed in three stages.The first stage involves establishingconditioned place preference, withoutthe variable of social interaction, intypically developing children. In stagetwo, social interaction is added, stillwith typically developing children. Inthe third stage, comparisons will bemade between the place preference oftypically developing children versuschildren with ASD. Findings will helpinform effective interventions as well asguide biological research investigating

differences in brain circuitry. “We need both clinically based research and

biological research—and we need the twointeracting,” Thompson said. “Scientific discoveryneeds to go both directions.”

Study participants will be typically developingchildren, 3-5 years, and children with ASD, 3-6years. Each of the three experiments requiresonly a single session, the longest about 2.5 hours.Families will be reimbursed for their time. Call(615) 936-3865. The study is funded by a MarinoAutism Research Institute Discovery Grant.

As more young children are diagnosed with an autism spectrum disorder (ASD), public school

systems are serving more children with ASD—making training in ASD a critical need for schooladministrators and teachers. TRIAD provides avariety of services to address this need, ranging fromchild-specific consultations to system-wide training.

“Lack of autism-specific training is a commonconcern in schools,” said Nicolette Brigham, Ph.D.,TRIAD outreach coordinator. “Providingappropriate services is a challenge because there is aparticular set of educational and behavioralstrategies that work well for students with autism.”

Collaborative child-focused consultation isavailable to school personnel who want to addressthe academic or behavioral performance ofindividual students with ASD. A team approach isused, with TRIAD specialists, teachers, and parentsworking together to understand student strengthsand needs in order to design and implement theoptimal program.

Program consultation assists teachers and otherschool personnel in developing and implementing

specialized programs for students with ASD.Programs may have an educational, social skills, orbehavioral focus, such as developing a coordinatedplan for positive behavioral supports.

In collaboration with the Tennessee Departmentof Education, TRIAD offers district-wide TRIADTeacher Training workshops, which are hands-onand involve direct work in classrooms.

“We are able to customize our workshops andtraining for school systems to meet their needs,”Brigham said. “Some systems may want anintroduction to autism, while others may havespecific interests such as applied behavior analysisor how to integrate different methodologies—whatever the school system identifies as theirbiggest concerns.”

Also in collaboration with the TennesseeDepartment of Education, TRIAD provides 2-dayAdministrator Academies to 15 administrators, e.g.,principals, assistant principals, and specialeducation directors, in each of the three grandregions of the state. The workshops combinelectures, small group activities, and roundtable

discussions. Continuing education credit is offered.Administrator Academies are provided to otherstates and school systems by request.

“The goal is to provide information on bestpractices and basic tools that will enable them toevaluate their ASD programs and to support theirteachers,” said Kim Frank, TRIAD educationalconsultant. “We talk a lot about the antecedentsand consequences of behavior, and the role ofadministrators in supporting teachers. Forexample, in one Academy, after discussion, aprincipal realized that having the student sent tohim was actually reinforcing the child’sinappropriate behavior.”

TRIAD recently held an Administrator Academyin Little Rock, Arkansas. “This has been one of themost, if not the most, beneficial training I haveattended in my 15 years as an educator,” oneparticipant commented.

When responding to training requests, TRIADgives priority to school systems with whom TRIADhas contracts. For information on fee structure,contact (615) 936-2163.

Social Interaction–Not Motivating or Aversive? By Jan Rosemergy

Building ASD Educational Capacity By Jan Rosemergy

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LOUIS J. MUGLIA, PH.D., M.D. Edward Claiborne Stahlman Professor of PediatricsVice Chair for Research Affairs in PediatricsInterim Associate Director, Vanderbilt Kennedy CenterVanderbilt Kennedy Center memberJoined Vanderbilt Kennedy Center 2009

Research Interests The Muglia laboratory has advanced the in vivoanalysis of regulation of the endocrine stress response,i.e., activation of the hypothalamic-pituitary-adrenalaxis and characterization of glucocorticoid action,using novel genetically altered mutant mice. Thesestudies have elucidated the importance ofcorticotropin-releasing hormone and glucocorticoidsin neuroendocrine modulation, behavior, andperinatal development. Of particular interest is howdysregulation of glucocorticoid and neuropeptideaction in the central nervous system can contribute tothe genesis or exacerbation of psychiatric disorders.

A second major research area is elucidation of thetiming mechanism for birth in humans, and how thismechanism malfunctions to result in preterm birth.Studies are underway to identify the geneticdeterminants predisposing to prematurity.

Principal Investigator • Amygdala Glucocorticoid Receptor Function inStress, National Institute of Mental Health• Dissociated Agonists of the Glucocorticoid Receptor:Mechanisms and Novel Applications, Pfizer, Inc.• Genetic Analysis of Human Preterm Birth, March ofDimes Foundation• Burroughs Wellcome Fund Research Consortium onPreterm Birth

Clinical InterestsMuglia is a physician-scientist with expertise inpediatric endocrinology. He served as director of theDivision of Endocrinology and Diabetes, Departmentof Pediatrics, Washington University, prior to joiningthe faculty at Vanderbilt. His clinical interests includeneuroendocrine (pituitary) and adrenal disorders, aswell as endocrine disorders in newborns.

Honors and Awards• Pfizer Postdoctoral Award in Endocrinology, 1993• Clinical Investigator Award, National Institute of

Diabetes and Digestive and Kidney Diseases, 1994 • Society for Pediatric Research Young Investigator

Award, 1999 • American Society for Clinical Investigation, 2003• American Pediatric Society, 2008• National Institute of Child Health and Human

Development Board of Scientific Counselors, 2008

Selected PublicationsKolberm, B. J., Roberts, M. S., Howell, M. P., Wozniak,

D. F., Sands, M. S., & Muglia, L. J. (2008). Centralamygdala glucocorticoid receptor action promotesfear-associated CRH activation and conditioning. Proceedings of the National Academy of Sciences, 105, 12004-12009.

Plunkett, J., Borecki, I., Morgan, T., Stamilio, D., & Muglia, L. J. (2008). Population-based estimates ofsibling risk for preterm birth, preterm premature rupture of membranes, placental abruption and pre-eclampsia. BMC Genetics, 9, 44.

Kistka, Z., Palomar, P., Lee, K. A., Boslaugh, S. E., Wangler, M. F., Cole, F. S., DeBaun, M. R., & Muglia, L. J. (2007). Racial disparity in the frequency of recurrence of preterm birth.American Journal of Obstetrics and Gynecology, 196, 131.e1-131.e6.

EducationB.S., 1981, Biophysics, University of Michigan Ph.D., 1986, Molecular Genetics, University of Chicago M.D., 1988, Medicine, University of Chicago

Attraction to Developmental Disabilities ResearchI am attracted to developmental disabilities researchfor many reasons. First and foremost, the opportunityto improve the quality of life, by innovation anddiscovery in children’s health, has formed thefoundation for my career as a physician-scientist.Knowledge gained by exploring some of the mostfascinating unresolved questions in biology – Whatcomprises cognition? or What determines the timingfor birth? – will provide new avenues to impact oncommon disorders such as autism, childhoodpsychiatric diseases, and the many adverse sequelae ofprematurity. This increase in understanding will betterallow us to predict, to treat, and ultimately to preventproblems that compromise well-being over a lifetime.

Reasons for Kennedy Center MembershipI am honored to be a member of the VanderbiltKennedy Center because of the rich history toinvestigation, education, and implementation arounddevelopmental disabilities, along with the vibrantcommunity of investigators of which it is comprised.The diverse approaches utilized by VKC colleaguesimpressively span basic sciences, clinical research, andeducation, and exemplify how multidisciplinary effortscan bring fundamental discovery through tocommunity intervention. This cross-fertilization ofideas among neuroscientists, psychologists, educators,and clinicians is unique.

Leading the Vanguard of Discovery

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A Vanderbilt Kennedy Center study of mothers of newborns with Down

syndrome (DS) shows a need for health careand social services policies to addressdifferences related to ethnicity/race and age ofmothers. The study, which appeared in theJournal of Policy and Practice in IntellectualDisabilities (2008, Sept.), was conducted byRobert Hodapp, Ph.D, professor of specialeducation, and Richard Urbano, Ph.D., researchprofessor of pediatrics.

Little research has been done on ethnic/racialdifferences among mothers of young childrenwith DS. The researchers used official Tennesseebirth records from 1990 to 2002 to examineethnic/racial differences among mothers ofyoung children with DS. They looked atmother’s age when the infant was born,education levels of mothers, marital status ofmothers, and neighborhood median income.

They found differences between African-American mothers and mothers ofEuropean-heritage descent. Compared withEuropean-heritage mothers, African-Americanmothers of newborns with DS were of lowersocioeconomic levels and were younger, withmany more African-American mothers givingbirth at 23 years or younger. In both groups, theyoung mothers had the highest percentage ofwomen who had not graduated from high schooland who were unmarried. From earlier studies,mothers who are unmarried and who have notgraduated high school show greater supportneeds, even as they are less likely to know aboutand to make use of available services.

These findings point to the need for targetedhealth care and social support services forAfrican-American mothers specifically, and young mothers generally, who give birth tochildren with DS, especially since an array ofhealth issues most often accompany DS.

Down Syndromeand EthnicityBy Jan Rosemergy

Director’s Message from page 3

training, and service activities. Second, we aresuccessful due to hard-working staff members whoare intensely dedicated to the work of the Center.Third, across a variety of disciplines, the Centerattracts creative, cutting-edge scientists.

Finally, the Center is “mission-focused.”Through research, service, and training, the VKCcreates positive differences in the lives of peoplewith disabilities and their families. Our sharedmission, in turn, leads to creative programmingand scientific discoveries, and to renewedexcitement for the work ahead.

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AccoladesCamilla Benbow, Ed.D., Patricia and Rodes HartDean of Education and Human Development andprofessor of psychology, has been appointed to theCommittee for the Assessment of EducationResearch Doctorate Programs, which will overseethe first assessment conducted jointly by theAmerican Educational Research Association and theNational Academy of Education to examineeducation research doctorate programs in the U.S.

Meghan Burke, SpecialEducation doctoral student(Robert Hodapp, Ph.D.,advisor), received theTrainee VolunteerScholarship from theAssociation of UniversityCenters on Disabilities(AUCD) to attend the2008 AUCD AnnualMeeting and Conference.

Burke is a Vanderbilt Kennedy University Center forExcellence (VKC UCEDD) trainee in disabilitypublic policy.

Kathryn Edwards, M.D.,Sarah Sell Professor ofPediatrics, has beenelected to the Institute ofMedicine, NationalAcademy of Sciences.

Steve Graham, Ed.D.,professor and CurreyIngram Chair in SpecialEducation, has beenappointed as a member of the National ResearchCouncil’s Committee on Adult Literacy. Grahamand Karen Harris, Ed.D., professor and CurreyIngram Chair in Special Education, have developedSelf-Regulated Strategy Development (SRSD), atool used to improve children’s writing, which wasthe focus of a special issue of the journal ExceptionalChildren. A team of experts from the University ofOregon and Southern Methodist Universityreviewed SRSD and found it to be stronglyevidence-based; few such practices to date havereceived such status.

H. Carl Haywood, Ph.D., professor of psychology,emeritus, has been appointed to the Committee onthe Impact of Mobility and Change in the Lives ofYoung Children, Schools, and Neighborhoods. Thecommittee is a part of the Board on Children, Youth,and Families, a shared activity of the NationalResearch Council and the Institute of Medicine.

Community Health Charities of Tennesseehonored the following individuals as Champions inHealth: Lynnette Henderson, Ph.D., researchassistant professor of pediatrics and VKC researchparticipant recruitment coordinator, for hervolunteer work for the Autism Society of MiddleTennessee (ASMT); she is vice president of theASMT Board of Directors, has chaired its EducationCommittee, and currently serves on its AdvisoryBoard for Education Programming. CarolinaMeyerson for her volunteer work for the MentalHealth Association of Middle Tennessee; she is aHispanic Outreach specialist for Tennessee DisabilityPathfinder. holly lu conant rees for her volunteerwork for The Arc of Tennessee; she is a member ofthe VKC UCEDD Community Advisory Council.

Jon Kaas, Ph.D., Centennial Professor ofPsychology, received the 2008 Award for Excellencein Graduate Mentoring at the College of Arts andScience faculty assembly.

Craig Kennedy, Ph.D.,professor and chair ofspecial education, co-authored Peer SupportStrategies for Improving AllStudents’ Social Lives andLearning. The purpose ofthe book is to translateresearch undertaken overthe last 20 years inclassrooms across thecountry into a guide that teachers can use tostructure and implement peer support programs.

Kathleen Lane, Ph.D., associate professor of specialeducation, co-authored Developing SchoolwidePrograms to Prevent and Manage Problem Behaviors:A Step-by-Step Approach.

The Mayor’s Advisory Committee for People WithDisabilities honored several individuals andorganizations in its 2008 Awards ceremony: BethMalow, M.D., professor of neurology and director ofthe Vanderbilt Sleep Center, received the Health CareProvider Award in recognition of her service andresearch on the treatment of sleep disorders inindividuals with developmental disabilities. CaroleMoore-Slater, M.S., Tennessee Disability Pathfinderdirector, received the Professional Award inrecognition of her dedication to identifying disability-related resources and services. The family of John andJanet Shouse, VKC Community Advisory Councilmember, received the Family Award honoring theirmany volunteer advocacy activities on behalf ofindividuals with autism and other developmentaldisabilities. The Frist Center for the Visual Arts, aVKC Community Partner, received the OrganizationAward for its activities promoting art by and arteducation for individuals with disabilities.

BethAnn McLaughlin,Ph.D., assistant professorof neurology, has beenappointed an AssociateEditor of the Journal ofNeuroscience in theCellular and Molecularsection for a 3-year period.The appointmentrecognizes McLaughlin’sexpertise and her service as areviewer for the Journal.

Eunice Kennedy Shriver received the first SportsIllustrated Sportsman of the Year Legacy Award onthe 40th anniversary of the first Special Olympics.Shriver founded Special Olympics and has usedathletics to change the world for people withintellectual disabilities.

The Division for Research of the Council forExceptional Children selected Karen Sandmel,Special Education doctoral student (Karen Harris,Ph.D., advisor), to participate in the inauguralcohort of Doctoral Seminars in Special EducationResearch, an online seminar designed to fosterconnections among students at different universitiesand to raise research standards.

Tennessee Disability Pathfinder was featured on thewebsite of the Southeastern/Atlantic Region of theNational Network of Libraries of Medicine.Pathfinder is a project of the Tennessee Council onDevelopmental Disabilities and the VKC UCEDD.

The Vanderbilt Kennedy Center was recognized atthe Autism Speaks 2008 Inaugural Tennessee AwardsReception as a Gold Level Fundraiser at the AutismSpeaks Walk Now for Autism in November. TheVKC was the second highest team fundraiser in thestate. The individual top fundraiser for the Walk wasAllison Nahmias, research assistant on the TRIADHanen© More Than Words Project.

Volunteer Tennessee and members of theTennessee National Service Inclusion AdvisoryTeam received the Excellence in Partnering Awardat the 2008 National Conference on DisabilityInclusion and National Service in Alexandria,Virginia. The award recognized the building of ateam of 30 agencies across the state to include morepeople with disabilities in national and communityservice. Whitney Griffin, Tennessee DisabilityPathfinder, represented the VKC UCEDD at theaward ceremony. Elise McMillan, J.D., UCEDD co-director, and Courtney Taylor, M.Div., associatedirector of communications, are members of theTennessee Advisory Team.

Meghan Burke

Craig Kennedy, Ph.D

Kathryn Edwards, M.D.

BethAnn McLaughlin, Ph.D.

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Vanderbilt University is one ofsix programs selected

nationally to receive additionalfunds to expand training for thetreatment of infants and childrenwith hearing disabilities throughits Leadership Education inNeurodevelopmental Disabilities(LEND) program, said programdirector Terri Urbano, Ph.D.

“This funding is of majorimportance to Tennessee becauseour state, like so many others, lacksenough trained professionals inpediatric audiology to provideearly identification andintervention to infants andchildren with hearing disabilities,” saidAnne Marie Tharpe, Ph.D., professorof hearing and speech sciences and pediatricaudiology project co-director. “This additionalfunding will enhance our abilities to train the nextgeneration of pediatric audiologists and will providecontinuing education to practicing professionals.”

Vanderbilt will now collaborate with otherMaternal and Child Health Bureau (MCHB)Audiology training programs across the country toprovide continuing professional education,videoconferences, and web-based programs.

At the state level, the increase will expand

continuing education programs offered to TennesseeDepartment of Health personnel and will providetrainees with practical experiences ininterdisciplinary research projects across severaluniversities.

The funding allows Vanderbilt’s LEND programto add five long-term and five intermediate traineesin Audiology each year for 3 years, with expandedemphasis on children with hearing loss.

Funding also provides for cultural and ethnicdiversity training to be increased for MINDfaculty and additional trainees from diverse

backgrounds recruited. Specialtyinterdisciplinary training will beprovided through Vanderbilt’s Centerfor Experiential Learning andAssessment.

New annual funding over a 3-yearperiod is made possible through acontract to the Association of UniversityCenters on Disabilities from the MCHBof the Human Resources and ServicesAdministration.

Tharpe and faculty from MCH-funded pediatric audiology programs atthe University of North Carolina-Chapel Hill and Utah State Universitydeveloped and implemented training ina series of student orientation sessions

at the National Early Hearing Detectionand Intervention Meeting in Dallas, March

2009. Over 75 trainees, from universities across thecountry who are funded by the LEND programs andthe Pediatric Audiology Subawards, and their facultymentors were in attendance.

The national LEND program, known locally asthe Mid-Tennessee Interdisciplinary Instruction inNeurodevelopment Disabilities (MIND), teachesinterdisciplinary graduate and postdoctoral traineesspanning 12 health professions to provide services tochildren with neurodevelopmental disabilities.

For more information call (615) 936-6915.

When Spring Break arrives at VanderbiltUniversity, while some students head to

the beach, others take part in AlternativeSpring Break (ASB), the largest completelystudent-run organization on campus. ASBsprovide service learning opportunities forover 400 students every March. This year, the Vanderbilt Chapter of Best Buddies, a student organization that works to enhance the lives of individuals withintellectual disabilities by providingopportunities for one-to-one friendships,offered an ASB. To read their blog, visitbestbuddiesspringbreak.blogspot.com.

Best Buddies President Jessica SolomonIn one week, I learned more about the needs,desires, and ways of adults with intellectualdisabilities than I ever could have learned in anyclassroom experience. While my Peabody andSpecial Education curricula have provided mewith tools for working with adults withintellectual disabilities, my Best BuddiesSpring Break experience has provided me with a

means through which to implement and to test those tools.

On our trip to Knoxville, Tennessee, wecombined inclusive social activities withcommunity service. In the mornings, wevolunteered at Beardsley Farm and convertedpreviously useless green spaces located in urbanparking lots into edible gardens where familiescan grow their own food to eat. In theafternoons, we continued our service withAmeriCorps volunteers assisting with after-school

programs for inner-city youth. Some of our social activities included a

girls/guys night out, a basketball tournamentwith the Carson Newman Best BuddiesChapter, concerts at Knoxville’s Blue PlateSpecial, including Bela Fleck, and a LadyVols vs. Lady Commodores basketball game, thanks to the Vanderbilt KennedyCenter! While we managed to have a lot of fun, the best part, according to our Buddies, was the opportunity to serve.

Buddy Member Adrian EwingFrom this past first day of Saturday, I really

didn’t know what to expect, not until me, Chris, Josh, Clay and Portia, with the BestBuddies of the world such as Jesse, Richie,Jordan, Travis, Ashley, Emmie, Honora, Alice—as the best and funnest outgoing fun people tobe around, from the good times to the badtimes—we had the greatest time . . . We workedtogether on a project for people that is less thanus, to just having fun working with each other,helping me and my life. This is the greatestweek ever.

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Vanderbilt LEND audiology trainees and trainees from other national LEND programs atNational Early Hearing Detection and Intervention Meeting

LEND Pediatric Audiology Training By Jan Rosemergy

“Greatest Week Ever”

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Best Buddies Will McMillan, Ashley Pasquariello, Jeanne Gavigan,and Clay Searcy help plant a community garden on AlternativeSpring Break.

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Postsecondary EducationThe VKC Postsecondary EducationProgram (PSE) is well into its initialplanning year and will accept its firststudents in January 2010. Itsimplementation is being led by TammyDay, M.Ed., program director, EliseMcMillan, J.D., UCEDD co-director, andRobert Hodapp, Ph.D., professor of specialeducation and UCEDD research director.

Day, who joined the VKC in April,previously was a special education liaisonand compliance specialist and acoordinator of transition programmingand training in Rutherford CountySchools. She has been a member of theTennessee Task Force for PostsecondaryEducation for Students With IntellectualDisabilities since May 2007. During hercareer, she has had extensive experience workingwith students with diverse needs and their families.She is a graduate of Peabody College of Educationand says she was drawn back to the VanderbiltUniversity campus and to the PSE “because themission of the program is at the heart of my life’s work.”

“Tennessee is well overdue to have postsecondaryeducation programs for students with intellectualdisabilities,” said Day. “The program will help thesestudents attain their goals. They will be able tocontinue their education alongside their same-agepeers. This is huge for us in Tennessee! The studentswill have an opportunity to take college classes,

further develop their life skills, gain vocational skills,and participate in extracurricular activities withother college kids. I am thrilled to play a part inhelping postsecondary education become a realityfor students with intellectual disabilities.”

The Tennessee Council on DevelopmentalDisabilities awarded a 3-year grant to the VanderbiltKennedy Center to plan and coordinate a modelPostsecondary Educational Program that isintegrated, successful, sustainable, and replicable byother Tennessee colleges and universities. Forinformation contact tammy.day@vanderbilt.edu.

The VKC also is part of a national consortium ofuniversities working to expand opportunities forstudents with intellectual disabilities; forinformation see thinkcollege.net.

Arts and RecreationThe VKC Disabilities and the Arts Programhonored artists whose work was showcased in theexhibition, “Expressions Through Color”(January-March 2009), at a reception and musicalcelebration.

The artwork was created with support from arteducators at the Frist Center for the Visual Arts,who worked with campers in the 2008 VKC CampShriver Transitions and Sports Camp. Camperswere exposed to color theory, learned how to expressthemselves using color, and visited the Frist Centerto view the exhibit “Color As Field.” Later, eachcamper created a large, abstract color expression oncanvas, which culminated in the “ExpressionsThrough Color” exhibit. The paintings will beavailable for viewing again in 2010, in the Fristexhibit, “Responding to Art.”

In addition to honoring the artists, VKC leadersthanked the Academy of Country Music CharitableFund for its gift to fund scholarships for the VKCMusic Camp, a week-long residential camp forindividuals with Williams syndrome from across the country.

With the help of Nashville songwritersand producers, the campers write anoriginal song and record it on MusicRow. The camp culminates with a“dream come true”—performing at theGrand Ole Opry.

For information on VKC Recreation and Arts, contactgretchen.herbert@vanderbilt.edu, (615) 321-8761.

East TN Hispanic Outreach The Vanderbilt Kennedy HispanicOutreach program hosted the EastTennessee Disability Services and theHispanic Community Conference inApril 2009. Conference programmingeducated service providers who workwith Spanish-speaking families on

issues of cultural competence and enhanced theirskills in navigating the Camino Seguro Middle andWest resource database systems. The Conference alsoprovided a platform for implementing a CaminoSeguro East database.

Planning Committee members were KatyAlexander, Disability Law and Advocacy Center ofTennessee; Patricia Valladares, Support and Trainingfor Exceptional Parents; Dr. Coral Getino, AutismSociety of East Tennessee and HoLa Hora Latina; Dr.Loida Velázquez, Hispanics in Education andTraining; Dr. Lori Celaya, University of Tennessee-Knoxville; and Claudia Avila-Lopez and CeciliaMelo-Romie, Tennessee Disability Pathfinder.

For information on Hispanic Outreach activities,contact claudia.avila@vanderbilt.edu, (615) 322-8529,toll-free (800) 640-4636.

Orientation to DisabilitiesIn April 2009, the Vanderbilt Kennedy Center andthe Monroe Carell Jr. Children’s Hospital atVanderbilt offered two free 2-hour disabilityorientation sessions, Journeys in Disability. Thefirst session was provided for parents/caregivers ofchildren under 12, and the second was for adults andhigh school students with disabilities, their families,and support personnel.

Journeys sessions provide information onimportant terms, definitions, and relevant laws.They educate people on people-first languageand civil rights issues, and on choices that lead to positive outcomes. Participants leave the sessions able to identify federal, state, andlocal nonprofit agencies that may be able toprovide support, and with a notebook of resources. For information on future Journeys sessions, offered twice yearly, contactlynnette.henderson@vanderbilt.edu, (615) 936-0448, toll-free (866) 936-8852.

For information on these and other VKC programs,see the Services link at kc.vanderbilt.edu.

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Reaching Out

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Lorie Lytle, Dennis Lord and Erin Spahn of the Academy of Country Music, Shirley Speyer,and Donna Eskind celebrate ACM Charitable Fund’s gift to the VKC Music Camp.

Artist Olivia DeCaria with her painting at reception forExpression Through Color exhibit

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Tireless DedicationBECKY AND CHRIS LINK

By Courtney Taylor

Becky and Chris Link lead busy lives managing their business, Imagination Branding, which

provides promotional items for businesses. As if thatweren’t enough, Becky does smocking andembroidery on children’s clothing, does crossstitching, reads, scrapbooks, teaches at her church,spends time with her family—and she and Chrisvolunteer their time as members of the VanderbiltKennedy Center Leadership Council.

“Becky Link is one of the most genuinely kindand compassionate people I know,” said ElizabethRoof, research coordinator for VKC studies onPrader-Willi and Williams syndromes. “She has anopen and loving heart and approaches everythingwith a smile and a quiet determination. I marvel ather tireless dedication to the Vanderbilt KennedyCenter mission, and at her ability to juggle it all inher special, unpretentious way.”

Becky Link was born, raised, and still resides inGallatin, Tennessee. Chris and Becky have threechildren. Ethan is 22 years old, graduated fromCentre College in May 2008, and currently works asan organizer for Service Employees InternationalUnion on a healthcare initiative. Sarah is 11 yearsold, is in the sixth grade, and enjoys dancing,writing, and drawing. Seth, 19 years old, graduatedfrom Gallatin High School in May 2008 and isparticipating in Project Opportunity through theMonroe Carell Jr. Children’s Hospital at Vanderbilt.

“We first discovered that Seth has Williamssyndrome when he was in the second grade,”remembered Becky. “Later, that is how we came tofind the Vanderbilt Kennedy Center. I was looking ata publication on Williams syndrome, and I saw alisting for Music Camp at Vanderbilt. I just knewSeth had to be involved in that. One of his first toyswas a drum. He loved it so much, and he would sitalone and be content just keeping a rhythm. We gothim his first real drum set when he was in thethird grade.”

Seth has been involved in VKC Music Camp eachyear, and he continues to share his gift for drummingwith both the Vanderbilt and the Nashvillecommunities. Chris notes his involvement in MusicCamp as a springboard for his continualinvolvement in research.

“Seth’s involvement in research on Williamssyndrome has really opened my eyes,” he said.“Research is so important, way more importantthan I ever imagined, and we encourageparticipation whenever we can. I feel that what theVanderbilt Kennedy Center has given us runs way

deeper than what we have or everwill be able to give back, so I justtry to look for new ways to helpout when we can.”

“While we’ve offered peersupport to families on anindividual basis before, we hope tostart, with Elizabeth Roof ’sguidance, a support group forfamilies who have a family memberwith Williams syndrome,” Beckysaid. “I think that would be veryenriching and helpful. Gettinginvolved and sharing with peoplewho know what you are goingthrough is so important for the

whole family. When you see a person with Williamssyndrome who is meeting another person withWilliams syndrome for the first time, whichhappens at Music Camp all the time, it really pulls atyour heart strings.”

Since joining the Leadership Council 3 years ago,the Links have served on the Arts and RecreationCommittee, and their company has supplied T-shirtsfor Music Camp, TRIAD Social Skills Camp, andCamp Shriver Sports and Transition Camp. The tye-dyed shirts from the 2008 Music Camp are verypopular among campers and VKC staff andfaculty—“coveted” might be an even better word.

“Everyone loved the T-shirts from MusicCamp,” said Ashley Coulter, Sibling Projectcoordinator. “ I loved them so much that I madesure to find out who made them so we could usethe same company for the Tennessee AdultBrothers and Sisters Conference T-shirts. They’re awesome!”

The Vanderbilt Kennedy Center and its programsbenefit greatly from the talented and committedpresence of the Link family.

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Self-advocate andfolk artist Lois

Curtis was honoredat a reception at theVanderbilt KennedyCenter on April 2.Curtis spoke abouther art and herinvolvement as aplaintiff in theOlmstead Decision.

Curtis had spentmuch of her life as aresident in state-

operated institutions. Following denial of herrepeated requests to live in the community, she,along with Elaine Wilson (now deceased),initiated a lawsuit against the State of Georgia.

In 1999, their case came before the United States Supreme Court. The Olmstead

Decision established a national mandate tofree tens of thousands of people withdisabilities from institutionalization.

Curtis was very excited to let receptionattendees know that she hopes to own herown home soon. She spoke with joy aboutspending her days making art and goingshopping. Curtis has enjoyed great successas a folk artist. Her art has been exhibitedin many galleries in Georgia, where shelives, and across the United States. Samplesof her artwork were available for sale at the reception.

When asked about her life in aninstitution, Curtis remarked, “If it happensagain, call the police. I made something of myself.”

The reception was hosted by the TennesseeDevelopmental Disabilities Network, whichincludes the Tennessee Council on

Developmental Disabilities, Disability Law &Advocacy Center of Tennessee, University ofTennessee Boling Center for DevelopmentalDisabilities, and Vanderbilt Kennedy Center forExcellence in Developmental Disabilities.

TN DD Network Honors Lois Curtis By Courtney Taylor

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Lois Curtis and Elisabeth Dykens

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What is a song? Essentially, it is astory that has a beginning, a

middle, and an end. Songwriting is avenue for telling a story and for sharingmood and expressing feeling. It is aform of communication that can allow asongwriter, and his or her experiences,to be known, heard, and understood.

Tammy Vice is a songwriter. She alsois a Vanderbilt Kennedy CommunityAdvisory Council (CAC) member andformer trainee of the VKC LEND, Mid-Tennessee InterdisciplinaryInstruction in NeurodevelopmentalDisabilities Training Program. Whileparticipating in a CAC breakout groupon the topic of expanding arts andrecreation programming, Vice proposedconnecting students with disabilitieswith the Country Music Hall of Fame ®and Museum Words & Music Program.

The Songwriting ProcessIn the Words & Music program, classroom teachersfollow a curriculum that guides students in writingor co-writing song lyrics. Students also visit theMuseum, where they are matched with a professionalsongwriter, who adds the music and melodies totheir lyrics.

The Words & Music program had never been usedin a classroom that included students withdisabilities. So Vice and fellow songwriter SteveNelson (who wrote the theme song to “Winnie thePooh”) decided to volunteer their time to adapt theWords & Music Program to accommodate a group ofbudding songwriters with disabilities.

“When Tammy Vice approached us aboutparticipating in the Words & Music program, I washesitant,” said Adrienne Parks, classroom teacher inthe John Paul II (JPII) Hand in Hand Program.“Tammy is a professional songwriter and a parent ofa child with autism, and she was absolutelyconvinced that the program would be beneficial forthe students in my classroom. I was concerned thatour students’ writing would not be strong enough towork with the songwriters. I am so glad that I didnot give in to my doubt. This turned out to be anamazing opportunity for our students.”

When the program is implemented for typicallydeveloping students, the songwriters do notparticipate in the process until the very end, uponthe students’ visit to the Museum. Toaccommodate the students with disabilities in thewriting process, Vice and Nelson committed tovisiting the Hand in Hand classroom once a weekfor 6 weeks. Also present and ready to assistduring the process were “peer buddies,” studentswho had sung with the Pope John Paul II HighSchool choral program and who had knowledgeabout music to share with the students.

For the first 2 weeks, the student songwritersengaged in a stream-of-consciousness, free-style kind

of writing, listing their likes and dislikes. Theyidentified the people who were important to them,the things they liked and did not like to do, and thecauses that they found important. Once each studenthad a list from which to choose, they identified oneitem on the list and began to describe it. Was it afamily pet? What color was the pet? What did the petdo that was funny, and how did the student feelabout the pet?

“You never know what they will choose to writeabout,” said Vice. “Working with the students atJPII last year gave me permission, as a songwriter,to be more creative and to take risks. I would neverthink about writing a song about stale pizza,chores, or cleaning up dog poop in the yard, butthese are the things the students are thinkingabout. They are unguarded and completely free tocreate. That’s why the arts are so effective. Theyencourage creativity and are about your personalbest. There are no right and wrong answers in art.Your creation does not have to be anything butwhat is yours.”

Communication“The students did learn about songwriting, but itwas more than that,” said Parks. “They gained agreater sense of pride in their words because theywere able to share very personal experiences withothers through their songs. Some of my studentshave speech and language impairments, socommunicating with others about important eventsin their lives can be more difficult for them than fortheir peers. It was amazing to see how excited theywere to share their thoughts about important eventsand ideas.”

Once the students had written their songs andset them to music with the help of Vice andNelson, they visited the Country Music Hall of Fame ® and Museum and recorded a classalbum. The songs included: “I Am Going toSchool,” “Keep on Running,” “I Like Plays a Lot,”“My Season With the Team,” “What Love Is

All About,” and “Never Give Up.” “Everybody needs to be heard,” said

Vice. “I think that is the reason matchingthe Words & Music Program withstudents with disabilities is so importantto me. I know these kids have the wantand the ability to create, just like any otherkid has. I see how proud they are whenthey create something that expresses whothey are, something that is only theirs. Ithink we are so busy trying to fit peoplewith disabilities into our world that oftenwe do not think about what they want,what they like, and who they are. Thisprogram gives them a chance to thinkabout and to share their ideas and wants.We are not different. We all like to beheard and we all have something to say.”

Words and Music class at Country Music Hall of Fame ® and Museum with songwriter Tammy Vice (front row right)

Telling Stories Through Songs By Courtney Taylor

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What Love is All About (© April 2008)By Rachel Smolen (a peer buddy) & Tammy Vice

It feels like watching a movie with“happy ever after”Thinking about all the good times andthe laughterHigh Fives with my twin, Rachel, Vandy scoresfrom buddy, SeanHaving treats for Jeanne’s birthday, and playingboard games are funWhere I’m the one who ends up all confusedMy friends are teaching me a whole new setof rules

I know this is what love is all aboutI can’t quite put it into words, but in my heartthere is no doubtIt cares beyond all boundaries, feels like agentle breezeThat warms me in my soulI know this is what love is all about

****Never Give Up (© 2008)By Will McMillan (JPII Hand in Hand Programstudent) and Steve Nelson

I was a boy who was afraid of the monstersI was never brave at allThe things inside me knocked me down‘Til one day I stood up tall and said:

I will never give upI’ll never back downI won’t let anything turn me aroundNo, no...I’ll never give up

Excerpts from JPII Words& Music CD

Discovery is a quarterly publication of the Vanderbilt KennedyCenter designed to educate our friends and the community, fromNashville to the nation. The Center is committed to improving thequality of life of persons with disabilities of thinking, learning, perception, communication, mood and emotion caused by disruption of typical development. The Center is a university-wideresearch, training, diagnosis, and treatment institute. It is a EuniceKennedy Shriver Intellectual and Developmental DisabilitiesResearch Center funded by the Eunice Kennedy Shriver NationalInstitute of Child Health and Human Development, and aUniversity Center for Excellence in Developmental Disabilities(UCEDD) funded by the Administration on DevelopmentalDisabilities.

kc.vanderbilt.edu (615) 322-8240 (1-866) 936-VUKC [8852]

Elisabeth Dykens, Ph.D., Interim Kennedy Center DirectorLouis Muglia, M.D., Ph.D., Interim Associate DirectorTim Stafford, Director of OperationsJan Rosemergy, Ph.D., Director of Communications

UCEDDElisabeth Dykens, Ph.D., Co-DirectorElise McMillan, J.D., Co-Director; ServicesTerri Urbano, Ph.D., M.P.H., R.N., TrainingRobert Hodapp, Ph.D., ResearchJan Rosemergy, Ph.D., Dissemination

LEND Training Grant (No. T73MC00050 MCHB/HRSA)Terri Urbano, Ph.D., M.P.H., R.N., DirectorTyler Reimschisel, M.D., Associate Director

Treatment and Research Institute for Autism Spectrum DisordersWendy Stone, Ph.D., Director

Discovery Editor/Writer: Jan Rosemergy, Ph.D.Writer: Courtney TaylorGraphic Designer: Melanie Bridges, B.F.A.

Discovery is supported in part by Grant No. HD 15052 from EKSNICHD and Administration on Developmental Disabilities Grant #90DD0595

Vanderbilt University is committed to principles of EqualOpportunity and Affirmative Action© 2009 Vanderbilt Kennedy Center, Vanderbilt University

Vanderbilt UniversityVanderbilt Kennedy CenterPeabody Box 40230 Appleton PlaceNashville, TN 37203

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PAIDNASHVILLE, TNPERMIT NO. 85

Leadership Council ofVanderbilt Kennedy Center

Mrs. Cathy S. Brown, Chair

Mrs. Annette S. Eskind, Past Chair

Mrs. Barbara Gregg Phillips, Past Chair

Mrs. Honey Alexander

Ms. Sissy Allen

Mrs. Dana M. Atkins

Mrs. Jean Ann Banker

Mrs. Madge Bass

Mrs. Melissa Beasley

Mrs. Ann Bernard

Mrs. Barbara T. Bovender

Mrs. Linda Brooks

Ms. Mary L. Carlson

Mrs. Juanita Cate

Mrs. Elizabeth Ginsberg Dreifuss

Mrs. Ann Eaden

Mrs. Donna G. Eskind

Mr. Glenn Funk

Mrs. Charlotte Gavigan

Mrs. Bernice Gordon

Mrs. Carol Henderson

Mr. Robert W. Henderson II

Ms. Lucile Houseworth

Ms. Bethany Jackson

S p r i n g 2 0 0 9 D i s c o v e r y

Mrs. Gail Gordon Jacobs

Mr. Chris Link & Mrs. Rebecca Link

Mrs. Michael F. Lovett

Mrs. Lorie Hoppers Lytle

Mrs. Jack C. Massey

Ms. Andrea Blake McDermott

Ms. Pat McNellis

Mrs. Thomas E. Nesbitt, Jr.

Mrs. R. Thomas Patten

The Honorable Andrew Shookhoff

Mrs. Shirley F. Speyer

Mrs. Sue Spickard

Mrs. Julie Carell Stadler

Dr. Karen L. Summar

Mrs. Patricia W. Wallace

Ex-Officio Members

Dr. Elisabeth Dykens

Dr. BethAnn McLaughlin

Mrs. Elise McMillan

Dr. Louis Muglia

Mr. Tim Stafford

Please keep this Calendar insert and also checkthe Event Calendar on the VKC websitefor updates. If you wish to receive event

announcements by email, send your emailaddress to amy.pottier@vanderbilt.edu.

Event announcements are no longerbeing direct mailed. Thank you.

For information on fees and services contact (615) 936-5123

caresa.young@vanderbilt.edu

SUMMER SESSIONSJUNE 1-25 AND JULY 5-30

FALL SESSION SEPT 14-DEC 11

FOR EXCELLENCE IN DEVELOPMENTAL DISABILITIES

©2008 JUPITERIMAGES CORPORATION

VANDERBILT KENNEDY

READING CLINIC

Intensive, individualized tutoring for struggling readers (K-4th grade)

Methods proven by research

Receive ongoingassessments of progress

VKC Summer Camps

September

Ann and Monroe Carell Jr.Families First

May

Number 24 Spring 2009

Free workshops serving parents of children, ages2-5, diagnosed with an autism spectrumdisorder. Held in Room 241 Vanderbilt KennedyCenter MRL BuildingInformation (615) 343-4275familiesfirst@vanderbilt.eduRegistration kc.vanderbilt.edu/registration

Free monthly Saturday workshops8:30 a.m.-12 p.m.Coffee and sign-in 8-8:30 a.m. on all dates

JUNE 27Improving Communication

JULY 25Addressing Challenging Behaviors

AUGUST 29Developing and Diversifying Play Routines

SEPTEMBER 26Beginning Toilet Training

MAY 15Waddell & Reed Financial Services Charity Golf TournamentBenefiting Vanderbilt Kennedy Center CampsFriday 6:30 a.m. Registration, 7:30 a.m. ShotgunStart, 11:30 a.m. LunchHermitage Golf Course, The General’s RetreatContact (615) 343-5322kc.vanderbilt.edu/golf

MAY 16Autism: From Science to Treatment— Presentation by Autism Treatment NetworkClinical Specialists & Families FirstInformation SessionFree event for families co-sponsored with AutismSpeaks and Autism Society of Middle TennesseeRegister by May 11 at kc.vanderbilt.edu/registrationLimited free childcare available Saturday 9 a.m.-12 p.m. Room 241Vanderbilt Kennedy Center/MRL Building

MAY 16Alphabet Therapy WorkshopIntroduction for parents and teachers ofmethod of teaching school-aged children withAngelman syndrome the alphabet, numbers,colors, and shapes.12-6 p.m. Room 241Vanderbilt Kennedy Center/MRL BuildingRegister at kc.vanderbilt.edu/registrationInformation (231) 740-4375

MAY 20Special LecturePhenotypic Characterization in AngelmanSyndrome Using Advanced Imaging TechniquesSarika Peters, Ph.D., Assistant Professor ofPediatrics, Section of Developmental Pediatrics,Baylor College of MedicineWednesday 4 p.m. Room 241Vanderbilt Kennedy Center/MRL Building

SEPTEMBER 2Developmental Disabilities Grand RoundsPilot Testing of an Intervention for Attachment-Impaired Preschool ChildrenLinda Ashford, Ph.D., Assistant Professor ofPediatrics and Psychology; Patti van Eys, Ph.D.,Assistant Professor of PsychiatryCo-Sponsor VKC Interdisciplinary TrainingCouncil and PediatricsWednesday 8 a.m. Room 241Vanderbilt Kennedy Center/MRL Building

SEPTEMBER 16Neuroscience Graduate SeminarSerotonin Modulation of BrainDevelopment: Impact on Affective- andAnxiety-Related Adult Phenotypes Jay Gingrich, M.D., Ph.D., Associate Professor ofClinical Psychiatry, Columbia University MedicalCenter; Director, Sackler Laboratory of BasicScience, New York State Psychiatric InstituteCo-sponsor Vanderbilt Brain InstituteWednesday 4:10 p.m. Room 1220MRB III Lecture Hall

SEPTEMBER 23Neuroscience Graduate SeminarTitle TBADenes Agoston, M.D., Ph.D., D.Sc., AssociateProfessor of Anatomy, Physiology, and Genetics,Uniformed Services University of the Health SciencesCo-sponsor Vanderbilt Brain InstituteWednesday 4:10 p.m. Room 1220MRB III Lecture Hall

SEPTEMBER 24Lectures on Development and DevelopmentalDisabilitiesTitle TBADavid Nelson, Ph.D., Professor of Molecular andHuman Genetics, Baylor College of MedicineThursday 4:10 p.m. Room 241Vanderbilt Kennedy Center/MRL Building

June 8-26TRIAD Social Skills CampJune 8-12, June 15-19, June 22-26Three 1-week sessions for campers, ages 7-113-week session for campers, ages 12-21

June 8-26Camp Shriver Transitions and Sports CampFor campers with developmental disabilities,ages 16-25

June 28-July 3Music CampFor campers, ages 16 and up, withdevelopmental disabilities

Unless otherwise noted, events are free and open to the public. Events are subject to change.Please check the calendar on our website kc.vanderbilt.edu or contact (615) 322-8240 or toll-free (1-866) 936-VUKC [8852].

Please keep this calendar and check the Event Calendar on the VKC website for updates. If you wish to receive event announcements by email,send your email address to amy.pottier@vanderbilt.edu. Event announcements are no longer being direct mailed. Thank you.

For disability-related training and other events statewide and nationally, see Pathfinder Disability Calendar www.familypathfinder.org

Calendar of Events

Camp Shriver Transitions and Sports 2008

Take Part in Research

TN Disability Pathfinder

DSAMT Events

Community Events

Sibling Supports

Behavior Analysis Clinic

Reading Clinic

Arts & Disabilities

ASMT Events

Number 24 Spring 2009

S u m m e r 2 0 0 3 D i s c o v e r y

Vanderbilt Kennedy Center ExhibitsMonday-Friday 7:30 a.m.-5:30 p.m., LobbyVanderbilt Kennedy Center/MRL BuildingFor information contact (615) 321-8761

APRIL 1-JULY 31Art Through the Eyes of AutismCo-sponsored by VSA Arts of Tennessee andAutism Society of Middle Tennessee (ASMT)AUGUST 10-OCTOBER 2Looking Forward IICo-sponsored by Davidson County MentalHealth Court, Park Center East, TennesseeCouncil on Developmental Disabilities,Tennessee Division of Mental RetardationServices, and Tennessee Department of MentalHealth and Developmental Disabilities

For families of children, 3-18, withdevelopmental disabilitiesContact (615) 322-9007

For students in kindergarten and earlyelementary gradesSummer Sessions June 1-25 and July 5-30Contact (615) 936-5123

For children, teens, and adults who have a siblingwith a disability, chronic health care issue, ormental health concernFor all programs below, contact (615) 936-5118roxanne.carreon@vanderbilt.edu

JUNE 13, AUGUST 8, OCTOBER 10, DECEMBER 12SibSaturdaysAges 5-7 and 8-13 yearsGames, friends, conversation$10/child or $20/familyFinancial assistance availableAdvance registration requiredSaturdaysRoom 241 Kennedy Center/MRL Building

Phone, web, print resourceswww.familypathfinder.orgEnglish (615) 322-8529Español (615) 322-8529 ext. 11Toll-free (1-800) 640-INFO [4636]tnpathfinder@vanderbilt.edu

Disability CalendarInternet calendar of training and otherdisability-related eventskc.vanderbilt.edu/tnpathfinder/calendar.html

Statewide Directory2007-2008 Disability Services and SupportsWest, Middle, and East Tennessee volumes$25 per directoryContact (615) 322-8529 ext. 12 tracy.pendergrass@vanderbilt.edu

MAY 28-30Tennessee Disability MegaConference Nashville Airport MarriottFor more information, visitwww.tndisabilitymegaconference.org

Autism Society of Middle Tennessee www.tnautism.orgASMT event information (615) 385-2077Registration is requested for all eventsASMT members free; nonmembers $5/family

MAY 16, JULY 18SibSaturday

MAY 21, JULY 16Autism Orientation

Art Exhibit – see Arts & Disabilities, above

Down Syndrome Association of Middle TNwww.dsamt.orgDSAMT event information (615) 386-9002MAY 15Caleb Thompson Memorial Golf TournamentMAY 16, AUGUST 22Circle of FriendsJUNE 6Annual Family PicnicSibSaturdays – see above

See also SibSaturdays sponsored by AutismSociety of Middle Tennessee and DownSyndrome Association of Middle Tennessee

JUNE 20, SEPTEMBER 12, DECEMBER 19Teen FusionAges 13-17Locations and activities vary

Tennessee Adult Brothers and Sisters (TABS)Contact ashley.coulter@vanderbilt.eduRegister online atkc.vanderbilt.edu/site/services/disabilityservices/tabs.aspx

Vanderbilt Kennedy Center Research StudiesFor children and adults, with and without disabilities Lynnette Henderson (615) 936-0448Toll-free (1-866) 936-VUKC [8852]

Research Family Partnerskc.vanderbilt.edu/rfpRegister and be notified of research studies

StudyFinderkc.vanderbilt.edu/studyfinderView lists of studies, criteria, and contact information

City Scape by Susannah Mayhan, Art Through theEyes of Autism Exhibit