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Number 34 | Fall 2011 | Vanderbilt University

Promoting Person-Centered Thinking...........................................................................................Smart Technology for Teens with Autism.......................................................................................Tennessee and Beyond—Vanderbilt LEND Renewed..................................................................Goodbye and Hello—Community Advisory Council Transitions.....................................................

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P reschool teachers’ use of sophisticated vocabulary and analytic talk about books,combined with early support for literacy in the home, can predict fourth-grade

reading comprehension and word recognition, new research finds.The findings, published in Child Development and included in a review article in the

August 19, 2011, edition of Science, present evidence that there are lasting, complex, andmutually reinforcing effects that flow from strong early childhood classrooms.

“We need to take very seriously the importance of teaching language in the preschoolyears,” said David Dickinson, author of the study, professor of Education at Vanderbilt’sPeabody College and a VKC member.“It’s easy to look at tangible accomplishments suchas counting or letter recognition but much harder to measure richness of vocabulary andlanguage ability. Parents should take a careful look at what is happening in their kids’preschool classrooms and see if the teacher is engaging the child in conversations that arerich in language.”

This latest research, co-authored by Michelle Porche of Wellesley College, reportsresults of a longitudinal study that examined in detail language experiences of childrenfrom low-income homes when they were in preschool. The authors sought to identifyinfluences of these early experiences on children’s language and literacy at the end ofkindergarten and again in fourth grade.

Preschool teachers were audio- and videotaped, teachers were interviewed, andclassrooms were observed for their support of language and literacy. Children wereindividually assessed, and parents were interviewed to learn about their education leveland income and any family practices that foster language and literacy.

Although the sample was small, the researchers found robust relations between earlyclassroom support for language and later language and reading ability.

One preschool teacher behavior that predicted children’s growth was the frequency ofsophisticated vocabulary use during informal conversations. Such exposure predictedchildren’s kindergarten vocabulary, which correlated with fourth-grade word reading. Teachers’ use of sophisticated vocabulary also correlated with children’s kindergarten printability, and through that word reading skill, the early vocabulary exposure indirectlyaffected grade-four reading comprehension.

Continued on page 2

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Number of Genes Associatedwith MS Doubled BY CRAIG BOERNER

An international team of scientists has identified29 new genetic variants linked to multiple

sclerosis, providing key insights into the biology ofan important and debilitating neurological disease.

Multiple sclerosis (MS), one of the most common neurological conditions among young adults, affectsaround 2.5 million individuals worldwide. It is achronic disease that attacks the central nervous system, which includes the brain, spinal cord, andoptic nerves, and can cause severe symptoms such asparalysis or loss of vision.

Vanderbilt’s Center for Human Genetic Research(CHGR) played an important role in the researchpublished in Nature (August), which represents thelargest MS genetics study ever undertaken and effectively doubles the number of genes known to beassociated with the disease.

“We now know just how complex multiple sclerosisis,” said Jonathan Haines, CHGR director and oneof the principal researchers in this effort. He is T. H.Morgan Professor of Human Genetics, professor ofMolecular Physiology and Biophysics, and a VKC investigator. “These new genes give us many new cluesas to what is happening in MS and will guide our research efforts for years to come,” Haines said.

Researchers studied the DNA from 9,772 indi-viduals with multiple sclerosis and 17,376 unrelatedhealthy controls. They were able to confirm 23 previously known genetic associations and identifieda further 29 new genetic variants (and an additional

Continued on page 3

Preschool, Language, and Literacy Linked BY JENNIFER WETZEL

As parents and grandparents, teachers and friends, we all feel delight and wonder in

the great “why?” and “how?” questions thatchildren ask. Perhapspart of the joy in beinga researcher is that onecan continue to ask“why?” and “how?”Even better, we knowthat finding answers,even partial answers,one step at a time, canmake positive differ-ences in individuallives. At the Vanderbilt

Kennedy Center, over 200 Vanderbilt facultyare asking crucial “why?” and “how?” questionson a daily basis in order to improve the qualityof life of children and adults with disabilitiesand their families.

Our Center is fortunate to be part of a greatuniversity that values the research enterprise,just as it values the highest quality teaching andservice. The Vanderbilt Kennedy Center, likeVanderbilt University as a whole, is makingstrategic decisions not just to maintain researchstrength but to improve it and is leading theway in ground-breaking discovery.

Yet the times are challenging for fundingresearch. A recent estimate in ScienceInsiderputs the success rate for grant applicationssubmitted to the National Institutes ofHealth (NIH) at 17.4%, an historic low.Further, the paylines at the NIH instituteswith which VKC researchers typically workalso are at an all-time low; only grantapplications that score among the top 10thpercentile are considered for funding.

Against this backdrop, it is a tribute to themission-focused and exceptional researchconducted here that VKC researchers havecontinued to garner NIH and other funding.(See “Grants Awarded,” p. 10).

Our continued success likewise is a tributeto our donors—individuals and families whohave joined with us in the “why” and “how”quest for discovery and have made privategifts to support the VKC Nicholas HobbsDiscovery Grants.

Our scientists need seed money to collectpreliminary data to support their researchideas. These data allow them to competemore successfully for larger federal orfoundation grants. The VKC provides stellarresearchers with seed monies through theHobbs Donor Society. Members contribute$1,000 or more annually.

Continued on page 6

Director’s Message Philanthropy Is Critical to Discovery When awards were presented at the Annual

Conference of the Association of UniversityCenters on Disabilities (AUCD) in early November,3 of the 12 awards were presented to individualsand representatives of the VKC University Centerfor Excellence in Developmental Disabilities(UCEDD).

The Outstanding Achievement Award waspresented to Elisabeth Dykens, Ph.D., VKCDirector and VKC UCEDD co-director. She washonored for having “devoted her career toimproving the lives of individuals with disabilitiesand their families through research, teaching, andcommunity and public service.”

The Anne Rudigier Award recognizes anoutstanding trainee or student. The 2011 recipientis Meghan Burke, a doctoral student in specialeducation at Peabody College and a VKCUCEDD trainee. In the nomination letter, theUCEDD leadership wrote that “Meghandemonstrates an unparalleled combination ofaccomplishment and commitment to servingpeople with disabilities and their families.”

The VKC UCEDD was selected to receive theAssociation’s 2011 Council on CommunityAdvocacy Award (COCA), nominated by COCAand the Center’s Community Advisory Council(CAC), who wrote “In the 6 years since VKCbecame a UCEDD, it has grown and expanded itstraining, community, research, and service in thecommunity. The Community Advisory Councilplays an integral role in advising and providingsuggestions to the UCEDD faculty and staff. CACinput and suggestions are encouraged, listened to,and incorporated into UCEDD planning,supports, and services.”

“To receive this level of recognition after only 6 years is quite extraordinary,” said EliseMcMillan, J.D., VKC UCEDD co-director. “We are so proud of Elisabeth’s and Meghan’sexceptional contributions. And for our UCEDDto be nominated by our own CommunityAdvisory Council speaks to the remarkablepartnership we have with these dedicated self-advocates, parents, and community membersfrom across Tennessee.”

National Recognition of Excellence

PRESCHOOL, LANGUAGE, AND LITERACY from page 1

2 Fall 2011 | DISCOVERY

Group book reading in preschool also had long-term associations with later reading. Conversationsthat included analysis of stories and discussion ofwords and teacher corrections of incorrect responsespredicted receptive vocabularyat the end of kindergarten.This enhanced vocabularyability was associated withbetter vocabulary in fourth-grade. Also, preschool teachers’efforts to hold a child’sattention were related tofourth-grade comprehensionskills.

“While raising the level ofinteraction in group activitiesis important, some of mystronger results in this studyare seen from informalinteractions between teacherand child, showing theimportance of elevatedlanguage during times such asplay and lunch,” Dickinson said.

Dickinson says parents should carefullyexamine the nature of interactions happening attheir child’s preschool to see if teachers are engagedin conversations that will stretch language andknowledge. He noted that in recent years preschoolhas become more of an academic setting, wherepreviously the focus was primarily on socializationand children’s adjustment to groups.

The authors also found long-term effects of thehome. Children whose parents reported providingmore support for early literacy had strongervocabulary scores in fourth grade. Finally, the

structural complexity ofchildren’s language at age 3 was associated with fourth-grade vocabulary.Dickinson reviewed

research on preschoolinterventions in the August19, 2011, edition of Scienceand examined the role ofadult support for languageand challenges preschoolinterventions face whenseeking to foster languagegrowth.Dickinson began working

with Nashville preschoolprograms in August 2011 todevelop an approach that canhelp provide teachers with

skills to build language among their students.Specifically, he is examining how teachers can usediscussions surrounding book reading incombination with teacher support for dramaticplay to build language abilities.

Jennifer Wetzel is Senior Information Officer, Office of News and Communications, VanderbiltMedical Center.

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five that are strongly suspected) conferring suscep-tibility to the disease.

Many genes implicated in the study are relevantto the immune system, shedding light onto the im-munological pathways that underlie the developmentof multiple sclerosis. One-third of the genes identi-fied in the study have been previously implicated inplaying a role in other autoimmune diseases such asCrohn’s disease and Type 1 diabetes, Haines said.

Previous studies also have suggested a link be-tween vitamin D deficiency and an increased risk

of MS. Researchers in this studyidentified two genes involved in themetabolism of vitamin D, providingadditional insight into a possiblelink between genetic and environ-mental risk factors.

The international team led by theuniversities of Cambridge and Ox-ford, and funded by the WellcomeTrust, includes contributions fromnearly 250 researchers as members of

the International MultipleSclerosis Genetics Consortiumand the Wellcome Trust CaseControl Consortium.

Craig Boerner is NationalNews Director, Office of Newsand Public Affairs, VanderbiltMedical Center.

NUMBER OF GENES ASSOCIATED WITH MS DOUBLED from page 1

Autism, like other developmental disabilities, affects not only a child but also the immediate

family and extended family. Grandparents playimportant roles—loving caregivers, creative resourcefinders, dedicated advocates. And in some instances,grandparents may be able to provide gifts forresearch to find answers that may help create a betterfuture for their grandchildren and for other childrenwith developmental disabilities. This is the story ofthe Robert E. and Donna Landreth family.

As they searched forresources to help their daughterand son-in-law raise their sonwith autism, Mr. and Mrs.Landreth became connectedwith the Vanderbilt KennedyCenter. As an engineer andbusinessman from Midland,Texas, Bob Landrethunderstood the crucial role ofresearch and development. Thefamily understood the need toask large questions in under-standing and treating ASD. In 2009, their extraordinarygenerosity and foresight wereembodied in the LandrethFamily Discovery Grant,which was directed to studyingsensory processing in autismspectrum disorders (ASD).

With support from the Landreth FamilyDiscovery Grant, Carissa Cascio, Ph.D., assistantprofessor of Psychiatry, undertook research on thesense of touch in ASD, using both behavioral andbrain imaging approaches. Since the early develop-ment of the touch system is guided by genes, shecollaborated with Jeremy Veenstra-VanderWeele,M.D., assistant professor of Psychiatry. Now, almost2 years later, their pilot work has yielded significantfindings and has helped them garner federal fundingfor larger studies to continue this research.

“At birth, the touch system is more developedthan other senses,” Cascio said. “Autism is develop-

ing in infancy, and touch plays a big role in socialinteraction between parents and infants. Sodifferences in ways that infants with ASD experiencetouch can have serious cascading effects for latersocial development.”

The Cascio Lab uses DTI (Diffusion TensorImaging), a specialized form of Magnetic ResonanceImaging, to look at the way that touch is processedin the brain. A better understanding of the brainsystems involved may lead to identifying early

markers for autism, allowing earlier diagnosis andintervention, as well as the possibility of more effec-tive behavioral or pharmacological interventions.

The Cascio Lab also uses behavioral testing tolook at reactions to two types of touch. The first is“social touch,” where a child is touched by anotherperson, e.g., lotion is rubbed on the skin, or a handis stroked with a soft cloth. The second is a“internally controlled touch,” or “nonsocial touch,”where a child has control of what touches the skinand no other person is involved.

Using MRI, Cascio looked at two brain path-ways that are known to be important in conveying

Grandparents—Catalysts for Discovery BY JAN ROSEMERGY

sensory signals and measured how strong, oreffective, those pathways were in conveying sensoryinformation. She found that weakness in thosepathways was associated with hypersensitivity tosocial touch, but not to nonsocial touch, in youngchildren with ASD.

The Landreth Family Discovery Grant providedfunding to enable Cascio to use the practice scannerand the MRI scanners in the Vanderbilt UniversityInstitute for Imaging Science. Since not all the child-

ren with ASD in the study coulddo a successful MRI scan, theDiscovery Grant allowed thecollection of behavioral data on allchildren. While MRI datacollection is ongoing, behavioralfindings will be published inResearch in Autism SpectrumDisorders. The grant alsosupported Cascio’s collaborationwith Veenstra-VanderWeele toinvestigate how genetic variationmay affect defensiveness to touch.“MRI technology is expensive,

and even with our best guess ofwhich children we’ll be able toscan, given the confining spaceand scanner noise, sometimes welose data,” Cascio said. “Thissupport was critical to me as ayoung investigator, allowing me to

conduct the study and to gather preliminary data,which has helped me garner external NIH funding.”

Preliminary data provided by the LandrethFamily Discovery Grant have helped both Cascioand Veenstra-VanderWeele compete successfully fornew grants from the National Institute of MentalHealth. Thanks to the Landreth family’s investmentin discovery, these researchers will soon pursue theirnovel approaches on a larger scale. By leveraging theirgiving via a Discovery Grant, the Landreth Familymay improve not only the future of their grandchild,but the future of many children with developmentaldisabilities and their families as well.

DISCOVERY | Fall 2011 3

Research funded by the Landreth Family Discovery Grant compared reactions to nonsocial touch (left photo) and social touch (right photo) in children with autism.

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4 Fall 2011 | DISCOVERY

Incorporating person-centered thinking intoplanning with individuals with disabilities andtheir families is a growing movement within thedisability field. Thinking in a person-centered waymeans recognizing what is important to a person,identifying strengths and gifts, and building bridges betweenidentifying supports that willensure success and the actualimplementation of those supports.

Carol Rabideau, VKC socialworker, was certified recently as a person-centered thinkingtrainer. She is infusing theseelements into the work that she and others at the Center are doingwith individuals with disabilitiesand their families. Funding for the training was provided by theVKC, the Tennessee Council on Developmental Disabilities, and the Tennessee Department of Intellectual and DevelopmentalDisabilities.

“Person-centered planning isgrounded in understanding what is important to or for a person from their standpoint,” saidRabideau. “It means trying to be creative as wehelp put in place things that help them feel happyand successful, as opposed to trying to plug peopleinto our existing ideas or systems. All of us in thedisability field want to do what is best, and we

Promoting Person-Centered Thinking BY COURTNEY TAYLOR

often think we are person-centered, but at timeswe’re not and we’re not even aware of that.”

One illustration of how Rabideau is using the person-centered planning tools developed bythe Learning Community for Person-Centered

Practices is how she lends support to Next Steps at Vanderbilt students. For each new student,Rabideau holds a person-centered meeting tounderstand what is important to them and forthem, what their goals are for the next 2 years at Vanderbilt, and what their goals are for theirown lives.

Rabideau assists the students in creating a series of 1-page profiles. The first profile usuallyfocuses on different areas of their lives, e.g., leisureactivities, family, school. When they approachcompletion of the 2-year program, Rabideau and

each student develop a 1-page profile on employ-ment. Through theirinternships, they learn aboutthemselves and what isimportant to them. Theyhave a better idea of theirstrengths in an employmentsetting, what people admireabout them as employees,and what kind of supportthey need to be successful.Rabideau helps themdocument this knowledgeand is optimistic about theusefulness of the profiles.Rabideau also has used

some of the person-centeredtools with the first VKCAmeriCorps member.

In this case, a more detailed document wascreated.

“As a social worker, I’ve wanted to worktowards social justice for everyone no matter what their life circumstances, but especially forpeople with developmental disabilities, who maynot have always had a voice in their own lives.”

During their course of study, students in the NextSteps at Vanderbilt program have an oppor-

tunity to take classes at the Tennessee TechnologyCenter at Nashville (TTC-N). Two students, HallieBearden and Edward Nesbitt, are pioneers whobegan working towards supplemental certificates inSeptember 2010. In August, Beardenand Nesbitt participated in the TTC-N graduation ceremony. Eachreceived a supplemental certificatethat outlines proficiencies in theirrespective fields. Both students aimto work in an office setting.

In the Business SystemsTechnology program, Bearden andNesbitt learned basic office proce-dures. They completed units in officesafety, work ethics and profession-alism, and keyboarding. Theydemonstrated mastery of clerical tasks like collating,basic data entry, email, and book and equipmentinventory. At TTC-N, they worked at a receptiondesk, used copiers, prepared mailings, and did filing.

Next Steps Students Receive Certificates BY COURTNEY TAYLOR

“The instructors at TTC-N are amazing, and wework so well together,” said Next Steps DirectorTammy Day. “We identified office procedures thatwould be beneficial for our students to learn andfound creative ways for them to practice those skills.The instructors did research and found a textbook

that was written at an appropriate level for ourstudents. More important, they created a classroomenvironment that was accepting and modeled aninclusionary attitude to their other students.”

On August 12, Bearden and Nesbitt, wearingcaps and gowns, participated in the TTC-Ngraduation ceremony.

“We are in the business of helping people, allpeople, become prepared for employment,” saidTTC-N Director Mark Lenz.

Next Steps at Vanderbiltcurrently has studentsworking towards supple-mental certificates inAutomotive Technology andEarly Childhood Education.Other students haveparticipated in the MachineTool & Die program and theAutomotive Collision Repairprograms. Next Steps at Vanderbilt

is a 2-year certificationprogram for students with intellectual disabilities.Students self-direct the development of theirProgram of Study through initial and on-goingperson-centered planning activities.

Person-centered planning meeting. Left to right: Betty Carnahan, paternal grandmother; Carol Rabideau; LauraDoutre, deputy director, Policy and Innovation, Department of Intellectual and Developmental Disabilities; PortiaCarnahan, VKC AmeriCorps member; Cathy Rader, Metro Parks

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Edward Nesbitt and Hallie Bearden, the first Next Steps students to earn TCC-N Supplemental Certificates.

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Awareness of the behavioral signs of autism has increased dramatically, along with the know-

ledge that early diagnosis is crucial in order to accessearly interventions. Yet too often families who seekan assessment find they have to travel to a largemedical center and often wait weeks or even monthsfor an assessment. Waiting lists can be long, sincetoo few pediatricians or psychologists are trained forautism diagnosis. Meanwhile, families live withanxiety and the fear that they may be losing precioustime in finding help for their child.

For 4 years, TRIAD leadership has collaboratedwith the Tennessee Chapter of the AmericanAcademy of Pediatrics (TNAAP), TennCare, the VKC LEND, and the Tennessee EarlyIntervention System to develop and implement amodel program, STAT-MD, to train communitypediatric providers to provide autism assessmentsin their local communities.

“Our aim is to drastically reduce the wait fordiagnosis, and to make a significant impact not onlyon the child but also on the family,” said VKCTRIAD Director Zachary Warren, Ph.D., assistant

Helping Pediatricians and Families Identify Autism Earlier BY JAN ROSEMERGY

professor of Pediatrics and Psychiatry. “Without a formal diagnosis, families encounter barriers inobtaining early intervention or school-basedservices, or in getting insurance coverage fortherapeutic services.”

From the outset, Warren and his colleagues,including Dr. Quentin Humberd, TNAAP -Pediatric Society Foundation President, have beentracking the success and impact of this statewidetraining program. Twenty-seven pediatric providersparticipated in a series of regional training activitiesover the past 4 years, with model implementationand practice change tracked across the entire sample well over a year following training. Thoseimplementing the protocol documented significantshifts in within-practice diagnostic screening andconsultation behavior, with a 65.5% increase inASD-specific consultations reported in communitypediatric settings over the study period. Accuracy ofthese consultations performed within practice wasalso quite high, with pediatric diagnostic judgmentsagreeing over 90% of the time with comprehensiveassessments performed later.

“We wanted to be sure that accuracy was highand that this training truly made a difference, beforewe disseminated the model to other communitiesaround the country that are struggling with the sameissues,” Warren said.

After the training, pediatricians reported thatthey felt more comfortable discussing ASDdiagnoses with families. They also reported that theythought it was appropriate for families to receive thisdiagnostic information from their primary pediatricprovider in their home community. Feedback fromfamilies about the diagnostic process has beenpositive as well.

“Prior to training, the most common pediatricpractice was to screen for autism but then to refer toa specialized center for diagnosis, often resulting inlong waits. Now large practices are offering rapidenhanced diagnostic consultation within practicewhen screening or when parents bring up concerns.”

Warren expressed appreciation for the TennesseeEarly Intervention System’s willingness to partner inthis effort and to accept eligibility based on anautism diagnosis by a pediatric provider.

DISCOVERY | Fall 2011 5

The unfortunate reality is that despite intensivetreatments and supports, many children andadolescents on the autism spectrum still experiencedifficulty with social learning. Nilanjan Sarkar,Ph.D., professor of Mechanical and ComputerEngineering, and Zachary Warren, Ph.D., assistantprofessor of Pediatrics and Psychiatry, have partneredto develop new “smart” technologies that mightprovide highly individualized interventions—in asense, “personalized medicine” for autism.

“We need to be developing not just incrementalways of improving treatments, but whole newtreatment paradigms,” Warren said.

Impairments in social communication skillsare among the core features of autism spectrumdisorders (ASD). Research has shown thatchildren with ASD show atypical viewingpatterns during social interactions. Althoughseveral studies have used eye-trackingtechnology to monitor eye gaze for analysis off-line, there has not been a real-time system thatcould monitor eye gaze dynamically andprovide individualized feedback.

In their AUTOSLab, Sarkar and Warrenhave developed and are testing VIGART—Virtual Interactive System with Gaze-SensitiveAdaptive Response Technology. It is capable ofdelivering individualized feedback based on achild’s dynamic gaze patterns during virtualreality-based interaction.

VIGART collects physiological data as anindividual engages with a virtual reality system

“Smart” Technology for Teens with Autism BY JAN ROSEMERGY

that uses computerized avatars to simulate real-worldinteractions. The system has the “intelligence” tochange in response to the physiological data of theindividual in order to enhance learning. To detectemotional responses, the physiological signalscollected include electrophysiological skin response,heart rate, body temperature, and electromyography(EMG) for skeletal muscles, as well as eye gaze, pupildiameter, and eye blinking.

“This is technology-assisted autismintervention,” Sarkar said. “It combines eye gaze andother physiological data into one coherentunderstanding of how an individual is performing

and the level of engagement, and then responds bypresenting a new task or level of difficulty in orderto scaffold individual skills. It is a dynamic, not astatic, system.”

The technology is able to collect data inmicroseconds during an intervention, somethingimpossible to do in traditional behavioralobservation, Warren pointed out.

In an early study, 6 adolescents with high-functioning autism, ages 12 to 17, watchedcomputer avatars narrate a personal story. Theavatars blinked like typical teenagers and had facialexpressions appropriate to the story’s emotions. The

system tracked how often and how long theteens looked at various regions of interest,e.g., a narrator’s face or an object. Whenparticipants were more engaged, they wereabout 14% more likely to look at faces and60% less likely to look at background.“Endowing a virtual reality with the

ability to understand the physiology of howan individual with ASD is responding to asocial environment could facilitate learningat a more rapid rate than a static technologythat is just providing cues,” Warren said.This innovative research was funded

initially by a VKC Marino Autism ResearchInstitute Discovery Grant. The currenttechnology development and research arebeing supported by grants from theNational Institute of Mental Health andthe National Science Foundation.

Demonstration of Virtual Reality in AUTOSLab with a young child.

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Research Interests My current research involves development of geneticmouse models that probe abnormal serotoninsystem function in autism spectrum disorders(ASD). These efforts include collaborative work withRandy Blakely, Ph.D., and James Sutcliffe, Ph.D.,analyzing the effects of serotonin transporter variantson behavior and brain development. Other studiesfocus on mice with mutations in other genes thathave been implicated in the regulation of bloodserotonin levels. The goal is to translate findings inthese mouse models into new treatments forchildren with ASD. A parallel research arm is testingnew treatments based upon findings in the mousemodel of fragile X syndrome.

Principal Investigator • Murine Genetic Models of Autism, National Institute of Mental Health

• Neurobiological Signatures of Social Dysfunction and Repetitive Behavior, NationalInstitute of Mental Health

• Functional Studies of the OCD-Associated Neuronal Glutamate Transporter, Brain andBehavior Research Foundation (NARSAD)

Honors and Awards• National Institute of Mental Health Outstanding Resident Award, 2003

• American College of Psychiatrists Laughlin Fellowship, 2005-06

• American Psychiatric Association Resident Research Award, 2006

• American Academy of Child and Adolescent Psychiatry Junior Investigator Award, 2009-11

• International Association of Child and Adolescent Psychiatry and Allied ProfessionsDonald J. Cohen Fellowship Award, 2010

Education• A.B., 1996, Psychology, Harvard University

Leading the Vanguard of Discovery

Jeremy Veenstra-VanderWeele, M.D.Assistant Professor of Psychiatry, Pediatrics, and

Pharmacology • Vanderbilt Kennedy Center Investigator • Joined Vanderbilt Kennedy Center 2007

• M.D., 2001, Medicine, University of Chicago Pritzker School of Medicine

Attraction to Developmental DisabilitiesResearch I grew up knowing that the son of a close familyfriend had autism, which at the time was a prettyconfusing concept. I have a vivid memory of askingwhat being ‘artistic’ had to do with John hidingunder the bed when we visited. As I grew older, Icame to empathize with his experience, and with hisfamily. I think that all of us can relate on some levelto the extreme distress that he showed in a sociallystressful situation, but most of us can only imaginewhat it is like to experience that distress so much ofthe time, with so little relief.

I guess this experience primed me for when, notknowing exactly what I wanted to do, I landed asummer job in the lab of Dr. Ed Cook, a childpsychiatrist launching a genetics lab. Dr. Cookencouraged all of his students to spend some timeseeing patients in his clinic. I remember one patientin particular who showed me the reward of hard-won connection. After my third or fourth visit withlittle indication that she was aware of my presence,she tapped her shoe in my direction. Her parentsexplained that she was asking me to tie her shoe, herway of reaching out to me across the social andcommunication divide presented by her autism.

As a result of these experiences, and my clinicalwork as a child psychiatrist with children with autismspectrum disorders, I find myself pulled to under-stand why social communication that feels so naturalto some can be so unnatural for others. Likewise,seeing children who find themselves stuck in repeti-tive patterns of behavior makes me wonder what inthe brain is causing this behavioral “hiccup.” Mousemodels of autism susceptibility offer a path to under-standing how brain development and function arealtered, with the hope that this path also will lead tonew treatments.

Reasons for VKC Membership I came to Vanderbilt for a postdoctoral researchfellowship with the intent to learn molecularapproaches that would prepare me for a new line ofresearch. In deciding that Vanderbilt was the bestplace for further training, I had focused on thetremendous strengths and resources here inneuroscience research, but I had not spent muchtime learning about the Vanderbilt KennedyCenter and the tremendous variety of researchfocused on developmental disorders, from verybasic neurobiology to clinical and systems research.

Upon arriving here, I discovered thatVanderbilt had much more to offer than “just”world-class molecular neuroscience. I found aterrific community of psychologists, physicians,and researchers focused on central questionsrelated to autism spectrum disorders and otherdevelopmental disabilities. I continue to benefitfrom interactions with VKC members who bringdifferent ideas and perspectives to the centralproblems with which children and familiesstruggle. Those conversations have grown intocollaborations, including work to evaluatemedications based upon the mouse model offragile X syndrome. I feel incredibly blessed tohave found such a vibrant community of scholarsand clinicians focused on how to betterunderstand and serve individuals with disabilities.

Selected PublicationsVeenstra-VanderWeele, J., Kim, S. J., Gonen, D., Hanna, G. L., Leventhal, B. L., & Cook, E. H., Jr. (2001). Genomic organi-zation of the SLC1A1/EAAC1 gene and mutation screening inearly-onset obsessive-compulsive disorder. Molecular Psychiatry, 6,160-167.

Veenstra-VanderWeele, J., & Cook, E. H., Jr. (2004). Molecular genetics of autism spectrum disorder. Molecular Psychiatry, 9,819-832.

Dickel, D. E., Veenstra-VanderWeele, J., Cox, N. J., Wu, X., Fischer, D. J., Van Etten-Lee, M., Himle, J. A., Leventhal, B. L.,Cook, E. H., Jr., & Hanna, G. L. (2006). Association testing ofthe positional and functional candidate gene SLC1A1/EAAC1 inearly-onset obsessive-compulsive disorder. Archives of GeneralPsychiatry, 63, 778-785.

Carter, M. D., Shah, C. R., Muller, C. L., Crawley, J. N., Carneiro, A. M. D., & Veenstra-VanderWeele, J. (2011). Absence ofpreference for social novelty and increased grooming in integrinβ3 knockout mice: Initial studies and future directions. AutismResearch, 4, 57-67.

McPheeters, M. L., Warren, Z., Sathe, N., Bruzek, J. L., Krishnaswami, S., & Veenstra-VanderWeele, J. (2011). Asystematic review of medical treatments for children with autismspectrum disorders. Pediatrics, 127, 1312-1321.

6 Fall 2011 | DISCOVERY

Some families have made gifts of $25,000 ormore and have directed their gifts to areas likeautism or Down syndrome research. On page 3, youcan read what has been learned about sensoryresponses in autism because of the Landreth FamilyDiscovery Grant.

Hobbs Discovery Grants that have led to largefederal or foundation grants represent an impressive

34:1 return on investment—a more robust returnthan many other investments. There is no way,however, to calculate the difference that thisinvestment will make over time in the lives ofindividuals with disabilities and their families.

Within the next month, we will proudlyannounce the new recipients of 2011-12 HobbsDiscovery Grants. We have had a record number of

applications from VKC researchers who are pursuingcreative, game-changing ideas. Yet we will be able tofund only a quarter of them.

A Hobbs Discovery Grant satisfies our collectivecuriosity—yours and ours—to ask “how” and ‘why”questions that lead to positive changes for childrenand adults with disabilities and their families. Join usin this quest for discovery.

DIRECTOR’S MESSAGE from page 2

Megan Hart, M.Ed., coordinator of Education andTraining Services for Tennessee Disability Pathfinder,presented at the 2011 Alliance of Informationand Referral Systems (AIRS) conference. Shediscussed “Disability Etiquette and Accessibility:Providing I&R Services for People with Disabilities.”

Katherine Hartmann, M.D., Ph.D., deputydirector of the Vanderbilt Institute for Medicine andPublic Health, director of Women’s Health Research,and professor of Obstetrics & Gynecology andMedicine, has been named associate dean forClinical and Translational Scientist Development.

Craig Anne Heflinger, Ph.D., associate dean for Graduate Education at Peabody College and professor of Human and OrganizationalDevelopment, received the Mentoring Awardfrom Vanderbilt’s Margaret CuninggimWomen’s Center.

Lynnette Henderson, Ph.D., VKC UCEDDassociate director of Community Services andresearch assistant professor of Pediatrics, will deliverthe keynote address at the 2011 annual meetingof the Volunteer State Rehabilitation Association.

Carolyn Hughes, Ph.D.,professor of SpecialEducation, was among 10 national researchersrecognized for ExceptionalService to the Field by the American Associationon Intellectual andDevelopmental Disabilities.The award recognized Hughesand colleagues from other national universities asauthors of the Supports Intensity Scale, which wascalled a “game changing” contribution to theAssociation, the field, and the lives of people withintellectual and other developmental disabilities.

David Lubinski, Ph.D., professor of Psychologyand Human Development, received the 2011MENSA Senior Investigator Award for ResearchExcellence for his publication, Lubinski, D.(2009). Cognitive epidemiology: With emphasison untangling cognitive ability and socio-economic status. Intelligence 37, 625-633.

Beth Malow, M.D.,professor of Neurology andPediatrics and medicaldirector of the VanderbiltSleep Disorders Center, wasnamed the Burry Chair inCognitive ChildhoodDevelopment. This chairfocuses on the early detectionand treatment of cognitive

syndromes with genetic characteristics, such asAsperger’s syndrome. Malow is also the PrincipalInvestigator on NeuroNEXT, a consortium ofacademic medical centers that will beparticipating in neuroscience clinical trialsinvolving both adults and children, including thosewith neurodevelopmental disorders.

Bruce McCandliss, Ph.D.,Patricia and Rodes HartChair and professor ofPsychology and HumanDevelopment, andcolleagues organized aconference for the NewYork Academy of Scienceon Education andCognitive Neuroscience.

Carol Rabideau, L.C.S.W., has earnedrecognition as a Certified Trainer of Person-Centered Thinking by the Learning Communityfor Person-Centered Practices.

Jeremy Veenstra-VanderWeele, M.D., assistantprofessor of Psychiatry, Pediatrics, andPharmacology and director of the Fragile XTreatment Research Program, received aBiobehavioral Research Award for InnovativeNew Scientists (BRAINS) award from theNational Institute of Mental Health. Theseawards support innovative and groundbreakingresearch projects led by early stage investigators to explore the complex mechanisms underlyingmental disorders, novel treatment, and/orprevention strategies. Since 2009, 7-12investigators have been selected annually. Veenstra-VanderWeele is the first Vanderbiltfaculty member to receive this award.

David Zald, Ph.D., associate professor ofPsychology and Psychiatry, was one of six Vanderbiltfaculty members to receive a Chancellor’s Awardfor Research for outstanding contributions toresearch and scholarship. He received the awardfor his work on the relationship between individualdifferences in dopamine functioning and personalitytraits associated with risk for drug abuse.

Qi Zhang, Ph.D., assistant professor ofPharmacology, is one of 49researchers nationwide towin a 2011 NationalInstitutes of HealthDirector’s New InnovatorAward. The award is giveneach year “to catalyze giantleaps forward” in biomedicalresearch and the bettermentof human health.

DISCOVERY | Fall 2011 7

Accolades BY AMY POTTIER

Leonard Bickman, Ph.D., Betts Chair andprofessor of Psychology; director, Center forEvaluation and Program Improvement (CEPI);professor of Psychiatry, will receive the AmericanEvaluation Association’s 2011 Alva and GunnarMyrdal Evaluation Practice Award, given to anevaluator who exemplifies outstanding evaluationpractice and has made substantial cumulativecontributions to the field.

Aaron Bowman, Ph.D., assistant professor ofNeurology, presented an invited lecture for the Gordon Research Conference on Cellularand Molecular Mechanisms of Toxicity. The title of his presentation was “Patient-Derived StemCells as a Translational Model of ToxicologicalRisk.” He will also present the keynote address at the 27th International NeurotoxicologyConference. His keynote will discuss “Stem Cells … Super Heroes or Super Villains ofNeurotoxicology?”

Camilla Benbow, Ed.D., Patricia and Rodes HartDean of Education and Human Development,and David Lubinski, Ph.D., professor ofPsychology and Human Development, will deliver a keynote address at the 2011 annualconvention of the National Association forGifted Children. The address will be titled“Critical Questions in Talent Development:Answered Through 40 Years of LongitudinalResearch by Study of Mathematically PrecociousYouth (SMPY).” On September 1, thislongitudinal study of over 5,000 intellectuallytalented participants turned 40 years old.

Elisabeth Dykens, Ph.D., Annette SchafferEskind Chair and VKC director, has been elected co-chair of the Eunice Kennedy ShriverIntellectual and Developmental DisabilitiesResearch Centers Directors. She also has beenappointed to the Scientific Advisory Board ofthe John Merck Fund.

Kathryn Edwards, M.D.,Sarah H. Sell and CorneliusVanderbilt Chair andprofessor of Pediatrics, has received the 2011Distinguished PhysicianAward of the PediatricInfectious Disease Society.The Society’s highest honor, it is presented annually to apediatrician who has an extensive, distinguishedcareer in pediatric infectious diseases.

Jonathan Gitlin, M.D., Cornelius Vanderbilt Chair and professor of Pediatrics, has been electedto the Institute of Medicine of the NationalAcademies.

Kathryn Edwards, M.D.

Qi Zhang, Ph.D.

Carolyn Hughes, Ph.D.

Beth Malow, M.D.

Bruce McCandliss, Ph.D.

T ennessee and the nation face an urgent need forleaders in health care for children and youth with

neurodevelopmental disabilities. The renewal of theVanderbilt Leadership Education in Neurodevelop-mental Disabilities (LEND) training grant willmitigate that need. Funding from the Maternal andChild Health Bureau (MCHB), Health Resourcesand Services Administration (HRSA), U.S.Department of Health and Human Services, is for$2,932,500 over 5 years.

The Vanderbilt LEND is part of a nationalnetwork of 43 programs, including the BolingCenter for Developmental Disabilities (University ofTennessee-Memphis). George Jesien, Ph.D.,executive director of the Association of UniversityCenters on Disabilities, characterized the LENDs as"among the best in the country in providingpreprofessional, interdisciplinary training for a widerange of health and allied health professionals thatserve children and adolescents with developmentaldisabilities, including autism.”

Vanderbilt’s LEND is led by Director TerriUrbano, Ph.D., M.P.H., R.N., professor of ClinicalPediatrics and VKC UCEDD director of training. A name change from MIND (Mid-TennesseeInterdisciplinary Instruction in NeurodevelopmentalDisabilities) to Vanderbilt LEND reflects Vanderbiltcollaborations, the statewide and national scope ofthe program, and is consistent with other LENDs.Key programmatic concepts include advancedclinical knowledge and skills; interdisciplinary,family-centered, and community-coordinated care;advocacy, policy, research, and leadership.

InterdisciplinaryLEND graduate and postgraduate trainees are inaudiology, pediatric audiology, deaf education,families, nursing, nutrition, occupational therapy,pediatric medicine, pediatric dentistry, physicaltherapy, psychology, religion, social work, andspeech/language pathology. To incorporate thisbreadth of disciplines, Vanderbilt collaborates withBelmont University, Meharry Medical College,Tennessee State University, the University ofTennessee, and Family Voices of Tennessee (part ofthe Tennessee Disability Coalition).

“I was exposed to many aspects of working withchildren with neurodevelopmental disabilities andtheir families that I would not have experiencedthrough my discipline-specific work alone,” saidformer LEND trainee Whitney Loring, Psy.D., nowassistant professor of Pediatrics at Vanderbilt. “Thistraining allowed me to be a part of an interdiscipli-nary team that explored components of leadership."

Family-Centered“Children develop within families,” Urbano said.“The entire family is affected when a child has aneurodevelopmental disability. Professionals mustunderstand developmental challenges, related healthand family needs throughout the lifespan.”

Tennessee and Beyond—Vanderbilt LEND Renewed BY JAN ROSEMERGY

Each year LEND has a family trainee (a parentof a child with a neurodevelopmental disability)and a family faculty member from Family Voices.In partnership with the Junior League FamilyResource Center (Monroe Carell, Jr. Children’sHospital at Vanderbilt), trainees are mentored by a family of a child with a disability. “The family is the teacher in this situation,” Urbano said.“Trainees learn directly about experiences of dailylife from culturally diverse families.”

Pediatric ResidentsTraining future physicians is a critical component.LEND training for pediatric residents is led byAssociate Director Tyler Reimschisel, M.D., assistantprofessor of Pediatrics, director of the Division ofDevelopmental Medicine, and co-director of theResidency Training Program. Through thesepositions, he is able to weave content and experiencesinto a variety of didactic and clinical experiences.

Over 15% of children have a developmentaldisability. “The LEND is making considerableimpact on the care that children withdevelopmental disabilities receive by educating the health care professionals who care for them,”Reimschisel said. For example, during the requiredrotation in Developmental Medicine, pediatricresidents learn to evaluate and care for childrenwith developmental disabilities through directpatient care in the Center for Child Development,small group discussion sessions, visits to family

support organizations and communityagencies, meetings with families ofchildren with special needs, and asimulation of difficult conversations.

Pediatric AudiologyA Pediatric Audiology Supplement of $65,000 fromMCHB for LEND FY2012 has been renewed andwill fund this subspeciality focus. Approximately95% of all newborns in the U.S. are screened forhearing loss. Relatively few audiologists are trainedto assess and manage these young babies.

“The renewal allows Hearing and Speech Sciencesto continue to provide scholarships to graduatestudents in audiology who are committed to workingwith these children and their families," said AnneMarie Tharpe, Ph.D., P.I., professor and chair ofHearing and Speech Sciences, Vanderbilt BillWilkerson Center associate director, and LENDfaculty member. This training fosters the skillsrequired to diagnose hearing loss, to fit appropriatehearing technology, and to counsel families about theimpact and management of childhood hearing loss.

OutreachOutreach throughout Tennessee and theSoutheastern U.S. is through interdisciplinarycontinuing education programming, and monthlyvideostreamed distance education to communityprofessionals, in collaboration with the TennesseeDepartment of Health, Maternal and Child Health.LEND-developed educational materials aredisseminated statewide and are available online (see kc.vanderbilt.edu, Resources, Autism-RelatedMaterials).

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2011-12 LEND trainees (above)

LEND leadership (left): Terri Urbano, Ph.D.,M.P.H., R.N., Director; Tyler Reimschisel, M.D.,Associate Director; and Anne Marie Tharpe,Ph.D., Pediatric Audiology

▶ Tennessee Kindred StoriesEveryone has stories of life experiences to sharewith others. In advocating for improved servicesand supports for persons with disabilities and theirfamilies in Tennessee, disability organizations havelearned that sharing family stories is one of themost powerful ways to demonstrate what does anddoesn’t work.

The annual Tennessee Disability Days on theHill is a time for families to share their stories inperson with their State representatives andsenators. Often national disability organizationshold meetings in Washington, D.C., coupled withattendees meeting with their U.S. Congressionalrepresentatives or staff.

While sharing stories face to face is powerful,so, too, are sharing family stories via a publication.In recent years, The Arc Tennessee has partneredwith the Vanderbilt Kennedy Center to publishTennessee Family Stories booklets and to share themwith legislators.

Discussions with the VKC UCEDDCommunity Advisory Council revealed howimportant family stories are in bringing aboutchange. So with the Council’s urging, the VKCUCEDD and The Arc Tennessee have created awebsite to provide a way to make it easy forTennessee families to share their stories. The websiteis searchable by disability, age range, storytellerperspective, county, and topic. Topics illustratewhat families experience in areas like education,transition, employment, wait lists, and FamilySupport. We’ve named this website TennesseeKindred Stories of Disability.

“Kindred Stories has the potential to be of great benefit in many ways,” said Carrie Guiden,executive director of The Arc Tennessee. “Forfamilies, it gives them an opportunity to sharetheir stories and to connect to other families withsimilar experiences. For advocacy organizationslike The Arc, it helps us to ‘personalize’ ouradvocacy with legislators by sharing real stories of people in their districts and to identify wherethe support systems are working and failing. For educational institutions, it provides anopportunity to determine needs and to developbest practices to address them. For state agencies,it helps them identify with the realities of families supporting people with disabilities. Thepossibilities are great—provided that people takeadvantage of this tool.”

Individuals and agencies can help this projectin three ways:• Share your story. Stories may be submitted on the website or by mail. See the website forsubmission details. • Encourage others to share their stories.• Become a project partner. Disability agencies may become partners in the Kindred Storiesproject and use the database to coordinate targetedor general story projects.

VKC UCEDD Reaching Out BY COURTNEY TAYLOR

To submit a story or to learn more about theproject, visit kc.vanderbilt.edu/kindredstories, orcall (615) 322-5658.

▶ Connecting Adult SibsThe VKC UCEDD is committed to growing thereach and resources of TABS, or Tennessee AdultBrothers and Sisters, a support network for adultsiblings in Tennessee who have a brother or a sisterwith a disability.

One way the group is extending its outreach isby holding informal monthly gatherings inrestaurants or coffee houses. Called TABS ThirdThursdays, these gatherings are held in Memphis,Nashville, and Knoxville, to reach out to siblingsin West, Middle, and East Tennessee. Locationsand times are posted on the TABS Facebook page.Future plans include developing groups in each ofTennessee’s 9 Developmental Districts (a way inwhich State agencies organize services statewide).

In the months ahead, the TABS ExecutiveCommittee plans to develop a county network ofTennessee sibling “ambassadors” who will serve asa resource and liaison between local communitiesand TABS.

“We are excited to see TABS grow and trulybelieve that by creating the role of the siblingambassador, we will better support siblings acrossthe state,” said Ashley Coulter, VKC SiblingSupports coordinator.

County sibling ambassadors will help to connectadult siblings to one another on the local level sothat they can be of support to one another, sharingresources and providing social and emotionalsupport. Ambassadors also have the potential toserve as resources for research, training, and service

activities of the VKC UCEDD and the TennesseeDevelopmental Disabilities Network byidentifying supports needed at a local level.

In August, the TABS Executive Committeeheld a planning retreat, where regional groups andcounty ambassadors were discussed as ways toextend the network. For information on TABSThird Thursdays or TABS County Ambassadors,contact ashley.coulter@vanderbilt.edu, (615) 343-0545.

▶ Inclusive CongregationsReligious leaders and educators, individuals withdisabilities and family members, and disabilityservice providers gathered on October 11 for theSecond Annual Disabilities and CongregationInclusion Conference. Held in Nashville,attendees came to discuss strategies to improve theinclusion of people with disabilities in theircongregations.

Co-sponsored by Faith For All, the Conferenceincluded a presentation by Erik Carter, Ph.D.,Vanderbilt associate professor of Special Educationand VKC investigator. Carter is invested bothpersonally and professionally in this area. Hechallenged attendees to think beyond buildingramps to building relationships. He posited thattrue inclusion means welcoming and encouragingfull participation both inside the congregation’sdoors on Friday, Saturday, or Sunday, and outside

the doors on the other six days ofthe week. “Congregations are well-positioned

to offer a venue in which individualswith disabilities and their families canflourish,” said Carter. “They canpartner with individuals and familiesto support their spiritual lives and tohelp them explore ways to strengthentheir spiritual connections in thecongregation and in activities of theirchoice.”In order to assist attendees in

assessing where their congregationsare in the process of being trulywelcoming of individuals withdisabilities, Carter encouraged themto think about where they are on theministerial continuum of “ministryapart, ministry to, ministry among,ministry with, and ministry by.” The Conference also included

a presentation by Paul Leichty, who founded the CongregationAccessibility Network (CAN), a

Community Conversation, and lunchtimeprogramming that allowed attendees to share theirsuccess stories. For information on activities of theVKC Disabilities, Religion, and SpiritualityProgram, contact courtney.taylor@vanderbilt.edu,(615) 322-5658.

Siblings network at annual TABS Conference.

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“When James was born and we found out he had Down syndrome, my world fell

apart,” said LynnMarie Rink. “I knew I wasn’tfitting into what I felt like was the mother role.People would ask me ‘Have you bonded with yourson yet?’ and I would lie and say, ‘Oh, yeah, youknow.’ Very rarely would I admit the truth toanyone. But when I finally did bond with him—and it took four and a half years—it was amazing.Being James’s mother is amazing.”

Not only is Rink James’s mother,but she is also a Grammy-nominated polka musician. Thedepression that took over her lifeafter the birth of her son kept herfrom focusing both on her familyand on her career. However, she hasreturned in full force in her one-woman show, “Wrap Your HeartAround It – A Journey fromDepression to Dessert.” The showchronicles her experience as a parentof a child with Down syndrome andher journey out of depression.

“It’s been a long journey,” saidRink. “You always hear people saythat people with disabilities are notbroken. I realize now that he wasn’t,but his disability made me realizethat I was.”

While entering therapy was the central catalyst inRink’s journey to her son, she also vividly recalls twoturning points that gave her strength along the way.The first moment occurred while she was lookingout the window watching her neighbor’s childrenplaying in their yard.

“As I sat watching them, I felt anger and self-pityrise up within me,” remembered Rink. “I thought,‘why can’t I have a typical child?’ I went through alist of all the things he probably was not going to getto do and be. And I was so mad at God at that

Story of a Mother’s Journey BY COURTNEY TAYLOR

moment. I heard myself yelling out loud, ‘God, Icannot wrap my head around the fact that I have achild with special needs.’ And in that moment, Iheard back from somewhere deep inside of me, ‘I’mnot asking you to wrap your head around it. I’masking you to wrap your heart around it.’ Now, Ididn’t immediately walk away and say, ‘Oh, I get it.’I got it, but I still didn’t know how to do it. For me,the how came with finding a really great therapist.”

The second moment occurred while shoppingfor a dryer at Sears with her son. She noticed awoman with tears in her eyes staring at them. The woman approached and began telling themabout her own son with Down syndrome who hadrecently passed away.

“He had been 60 years old,” said Rink. “She toldme how the doctors had told her she should put himin an institution, but she didn’t listen. She kept himat home with her. And then she said, ‘Can I tell yousomething? I know how hard it is right now, but I

10 Fall 2011 | DISCOVERY

SUSAN GRAY SCHOOL

promise you, if you can find a way to not lookinto the future, not think into the future, not livein fear, and live in just this day, right now, you aregoing to feel more love than you’ve ever imagined.’So she’s crying and I’m crying, even the saleslady is crying. After we left and were in the car, I sawJames in the rearview mirror. I looked at him and I don’t know… but I looked at him and I heardmyself telling him ‘I love you, just the way you

are.’ And I really meant it.”At the urging of her therapist, Rink

began keeping a journal. Not long afterthat she began shaping the entries intothe stories that would become thecontent of her one-woman show.Proceeds from the tour opening, whichtook place on October 16, benefittedthe Susan Gray School for Children,where James is a student. “The Susan Gray School was a life

saver,” said Rink. “They didn’t know it,but they were taking care of me aswell as James. It was all I could do toget him to school and pick him upwhile I was sitting at home in mybathrobe depressed. They cared forhim when I couldn’t.”Proceeds from the remainder of the

6-city tour will benefit each city’s localDown syndrome organization.

“This is a happy story,” said Rink. “If you hadseen me four years ago, you probably would havethought ‘just throw in the towel.’ It was prettyscary. But now, my whole life as a person and as anartist has turned around. There is a responsibilityto share my story so others can hear it and beencouraged. If I thought polka music was fun andhappy before, well now I have a story that willmake them happy. And where polka was fun andhappy on the surface, hopefully this will be funand happy in their hearts.”

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Improving Prematurity-Related Respira-tory Outcomes at Vanderbilt (IMPROV)Judy Aschner, M.D. (Pediatrics)National Heart, Lung, and Blood Institute

Preventing Prematurity and PoorPregnancy Outcomes Training Grant Judy Aschner, M.D. (Pediatrics) National Institute of Child Health and Human Development

Regulation of the SerotoninTransporter Function by Integrins in the Mouse Brain Ana Carneiro, Ph.D. (Pharmacology)National Institute of Mental Health

Mechanisms of CaM Kinase II SignalTransduction* Roger Colbran, Ph.D.(Molecular Physiology & Biophysics) National Institute of Mental Health

Hereditary Defects in Human Sodium Channels* Alfred George, M.D. (Medicine) National Institute of NeurologicalDisorders and Stroke

Training Program in Ion Channel and Transporter Biology* Alfred George, M.D. (Medicine)National Institute of NeurologicalDisorders and Stroke

Functional Brain Imaging with Oscillating Gradient DW-MRI John Gore, Ph.D. (Radiology) National Institute of NeurologicalDisorders and Stroke

Training Program in QuantitativeOcular Genomics Jonathan Haines,Ph.D. (Molecular Physiology &Biophysics), National Eye Institute

National Center on Quality Teachingand Learning Mary Louise Hemmeter,Ph.D. (Special Education) Administration for Children and Families,U.S. Health and Human Services

Circadian Programs in Bacteria* Carl Johnson, Ph.D. (Biological Sciences)National Institute of General MedicalSciences

Cellular Correlates of HumanConsciousness: How Many NeuronsAre in the Cortical Areas That Are MostInvolved in Awareness? Jon Kaas, Ph.D.(Psychology), Mathers Foundation

Pathophysiology and Treatment ofGABRG2 N onsense EpilepsyMutations* Robert Macdonald, Ph.D.,M.D. (Neurology), National Institute ofNeurological Disorders and Stroke

Grants Awarded *Competing renewal funded

Jim, James, and LynnMarie Rink

Ron Butler, Nashville

W ith respect and gratitude, we say goodbye toRon Butler and Joyce Sievers as they step

down from their roles on the VKC UCEDDCommunity Advisory Council (CAC). Butler andSievers were instrumental in the initial developmentof the CAC, even before the VKC became aUCEDD in 2004. Both served two 3-year terms.

Butler has an adult son with an intellectualdisability and cerebral palsy. He is a past president of The Arc Tennessee and a current board member.He also is a board member of Mid-TN SupportedLiving, Inc.

Sievers, too, joined the CAC as a parent and hasbeen involved in the disability field for over 45 years.She serves on the Executive Committee of theTennessee Council on Developmental Disabilities(TCDD) and is on the Advisory Council ofTennessee Disability Pathfinder. Since its inceptionin 1993 and for 15 years, Sievers coordinated theFamily Support Program for 12 Upper Cumberlandcounties. She directed an art program for adults withdevelopmental disabilities at Pacesetters, Inc., inCookeville, Tennessee, for 6 years.

“Ron knows the importance of work andemployment for youth with disabilities, and was oneof those on our CAC who encouraged addingEmployment as an Area of Emphasis,” said EliseMcMillan, J.D., VKC UCEDD co-director. “Joyceis responsible for the VKC having the great privilegeof sharing art exhibits by the talented artists ofPacesetters. She is responsible for helping us expand

Goodbye and Hello—Community Advisory Council Transitions BY COURTNEY TAYLOR

our work outside of Middle Tennessee. We so appre-ciate the work they have done with us over the years.”

Welcoming New MembersLuz Belleza-Binns is the mother of two children,one with autism. She works with Metro NashvilleSocial Services, where she provides case managementto families in need, especially those who are homelessand/or have children with disabilities. She is agraduate of the TCDD’s Partners in Policymakingand is an advocate in many IEP meetings in the localschool system. Currently, she serves on the boards ofthe Nashville Area Chamber of CommerceEducation Report Card Committee, Family AdvisoryCouncil on Special Education with Metro NashvillePublic Schools, TN Disability Pathfinder HispanicOutreach Project, the Salvation Army HispanicMinistry Board, and the TN Hispanic Chamber ofCommerce, for which she serves as Chairman of theLatinos En Accion professional network.John Chase was diagnosed with autism at age 4.

He graduated from Concord Academy high schoolin 2006, and in 2010 earned a bachelor’s degreefrom Visible Music College, where he now works asan assistant librarian. Since 2006, he has been amusic intern at Independent Presbyterian Church,where he works with the boys’ junior high andsenior high choirs. He also has been a member of theadult choir since 2005.John Donovan is the guardian of his brother,

who, after a series of brain aneurysms, is paralyzed

DISCOVERY | Fall 2011 11

on one side. Donovan’s volunteer activities includeserving on the Planning Committee for the 2011Tennessee Adult Brothers and Sisters (TABS)Conference, as well as supporting SpecialOlympics and MDA fundraisers. He is a systemadministrator at Vanderbilt University MedicalCenter and has children and grandchildren inFlorida and Germany.Joey Ellis has a mild form of cerebral palsy,

which inspired him to pursue a degree in specialeducation, and to teach for 5 years. In July, he joinedSTEP (Support and Training for ExceptionalParents), where he enjoys assisting families who havechildren with disabilities. He believes that if it werenot for his parents standing up for his rightsthroughout his childhood, he would not be wherehe is today. Omegbhai Uriri has a daughter with autism.

She has completed training programs throughTRIAD, Tennessee Voices for Children, STEP, and Volunteer Advocacy Training. She is a boardmember-at-large for The Arc Tennessee. With the assistance of Meharry Medical College andTennessee Disability Pathfinder, she began asupport group for African immigrant families who have children with disabilities. She hopes to open avenues for better opportunities forindividuals with disabilities, especially minorities.

The CAC advises the UCEDD leadership and is a full partner in planning, implementing, andevaluating activities.

Vanderbilt Site for Network of Excel-lence in Neuroscience Clinical TrialsBeth Malow, M.D., M.S. National Institute of NeurologicalDisorders and Stroke

Research Training in Diabetes andEndocrinology* James May, M.D.(Medicine), National Institute of Diabetesand Digestive and Kidney Diseases

Adaptive Response Technology forAutism Spectrum Disorders InterventionNilanjan Sarkar, Ph.D. (MechanicalEngineering), National Institute ofMental Health

Saccade Target Selection FrontalCortex* Jeffrey Schall, Ph.D. (Psychology)National Eye Institute

Patterns and Environmental Predictors of Employment andIndependence Among Adults with ASD Julie Taylor, Ph.D. (Pediatrics) Autism Speaks

Risk and Resiliency for Youth with Autism During the Transition to Adulthood Julie Taylor, Ph.D. (Pediatrics) National Institute of Mental Health

Neurobiological Signatures of SocialDysfunction and Repetitive BehaviorJeremy Veenstra-VanderWeele, M.D.(Psychiatry) National Institute of Mental Health

Imaging Synapse Formation UsingNovel Microfluidic Platforms DonnaWebb, Ph.D. (Biological Sciences) National Institute of Mental Health

A Signaling Integrator Plays a CriticalRole in Regulating Cell MigrationDonna Webb, Ph.D. (BiologicalSciences), National Institute of GeneralMedical Sciences

Anhedonia and the Neural Basis of Effort-Based Decision Making in Depression David Zald, Ph.D. (Psychology) National Institute of Mental Health

Dopamine Influences on Self-Regulation and ImpulsivityDavid Zald, Ph.D. (Psychology)National Institute on Drug Abuse

Joyce Sievers, Smithville Luz Belleza-Binns, Hermitage John Chase, Memphis John Donovan, Fairview Joey Ellis, White House Omegbhai Uriri, Antioch

Leadership Council of Vanderbilt Kennedy Center

Mrs. Donna G. Eskind, ChairMrs. Cathy S. Brown, Past ChairMrs. Annette Eskind, Past ChairMrs. Barbara Gregg Phillips, Past Chair

Mrs. Honey AlexanderMs. Sissy AllenMrs. Melinda BalserMrs. Jean Ann BankerMrs. Madge BassMrs. Melissa BeasleyMrs. Ann BernardMrs. Barbara T. BovenderMrs. Linda BrooksMs. Mary L. CarlsonMrs. Elizabeth Ginsberg Dreifuss

Mrs. Ann EadenMr. Glenn FunkMrs. Charlotte GaviganMrs. Bernice GordonMrs. Carol HendersonMr. Robert W. Henderson IIMs. Lucile HouseworthMs. Bethany JacksonMrs. Gail Gordon JacobsMr. Chris and Mrs. Rebecca Link

Mrs. Lorie Hoppers LytleMrs. Jack C. MasseyDr. BethAnn McLaughlinMrs. Thomas E. Nesbitt, Jr.Mrs. Pat PattenMrs. Andrea Blake SandersThe Honorable Andrew Shookhoff

Mrs. Shirley F. SpeyerMrs. Sue SpickardMrs. Julie Carell StadlerMrs. Mary Layne Van Cleave

Mrs. Patricia W. Wallace

Ex-Officio MembersDr. Elisabeth DykensMrs. Elise McMillanDr. Louis J. MugliaMs. Linde PflaumDr. Jan RosemergyMr. Tim Stafford

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Discovery is a quarterly publication of the Vanderbilt Kennedy Center designed to educate our friends and the community, from Nashville to the nation. The Center facilitates discoveries and best practices that make positive differences in the lives of persons with developmental disabilities and their families. The Center is a university-wide research, training, diagnosis, and treatment institute. It is a Eunice Kennedy ShriverIntellectual and Developmental Disabilities Research Center funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and a University Center for Excellence in Developmental Disabilities (UCEDD)funded by the Administration on Developmental Disabilities. Discovery is supported in part by Grant No. HD 15052 from EKS NICHD, Administration on Developmental Disabilities Grant #90DD0595, and LEND Training Grant No. T73MC00050 MCHB/HRSA.

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

Elisabeth Dykens, Ph.D., Kennedy Center DirectorLouis Muglia, M.D., Ph.D., Associate DirectorJan Rosemergy, Ph.D., Deputy Director and Director of CommunicationsTim Stafford, Director of Operations

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

LENDTerri Urbano, Ph.D., M.P.H., R.N., DirectorTyler Reimschisel, M.D., Associate Director

Treatment and Research Institute for Autism Spectrum DisordersZachary Warren, Ph.D., Director

Discovery Editor/Writer: Jan Rosemergy, Ph.D.Graphic Designer: Kylie Beck

Vanderbilt University is committed to principles of Equal Opportunity and Affirmative Action. ©2011 Vanderbilt Kennedy Center, Vanderbilt University

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Sign of Our TimesThe building formerly known as “MRL” has a newname—One Magnolia Circle

The building houses many Vanderbilt offices andactivities, as well as Peabody College’s Depart-ment of Special Education and the Susan GraySchool for Children. A new name was selected toleave behind outdated disability language. See kc.vanderbilt.edu News and Events, NewsReleases for related story.

Disability Mentoring Day at Vanderbilt celebrated October as National Disability Employment Awareness Month.

BRITT HENDERSONTRAINING SERIES FOREDUCATORSFor school teams, individuals,parents Register atkc.vanderbilt.edu/registrationInformation (615) 936-8852Wednesday 5-7 p.m.

• NOVEMBER 30*Effective Inclusion

• JANUARY 11*Conducting Valid FunctionalBehavioral Assessments

• JANUARY 18*Designing and ImplementingEffective Functional Assessment-Based Interventions

• FEBRUARY 22*Transition for Individuals with Co-Occurring Disorders

• MARCH 14*Secondary Interventions:Behavior Contracting and Self-Monitoring

DECEMBER 2*Community Advisory Council

Meeting

For details contact (615) 936-8852Friday 9 a.m.-2 p.m.

DECEMBER 10*SibSaturday

For siblings 5-7 and 8-13 years whohave brother/sister with disabilityGames, friends, conversationAdvance registration required. 2012 dates to be announced.Contact ashley.coulter@vanderbilt.edu, (615) 343-0545

DECEMBER 14*Developmental Disabilities

Grand Rounds

Impulsivity: When the Gas Pedal Is Stronger Than the BrakesDavid Zald, Ph.D.Associate Professor of Psychology and PsychiatryCo-Sponsor Department ofPsychologyWednesday 12 p.m.

THROUGH DECEMBER 31Arts and Disabilities Exhibit

Creative Expressions XVIIJointly sponsored with NashvilleMayor’s Advisory Committee forPeople with DisabilitiesMonday-Friday 7:30 a.m.-5:30 p.m.Lobby VKC/One Magnolia CircleInformation contact (615) 936-8852

JANUARY 2-APRIL 27Arts and Disabilities Exhibit

Art by VKC Summer ProgramParticipantsMonday-Friday 7:30 a.m.-5:30 p.m.Lobby VKC/One Magnolia CircleInformation contact (615) 936-8852

JANUARY 11Neuroscience Graduate

Program Seminar Series

Genetic Syndromes [general topic]Sarah Elsea, Ph.D.Associate Professor of Pediatrics,Virginia Commonwealth UniversityCo-sponsor Vanderbilt Brain InstituteRoom 1220 MRB III Lecture HallWednesday, 4:10 p.m.

JANUARY 18*Developmental Disabilities

Grand Rounds

Stress and Coping [topic]Bruce Compas, Ph.D.Patricia and Rodes Hart Professor ofPsychology and Human DevelopmentCo-Sponsor Department ofPsychology & Human DevelopmentWednesday 12 p.m.

JANUARY 23*Martin Luther King Jr.

Commemorative Lecture

Free at Last: The Meaning of Liberty in Intellectual and RelatedDevelopmental DisabilitiesRud Turnbull, LL.B./J.D.Marianna and Ross DistinguishedProfessor, Co-Founder and Co-Director of Beach Center onDisability, University of KansasMonday 4:10 p.m.

JANUARY 31*Statistics and Methodology

Core Training Seminar

Item Response TheorySun-Joo Cho, Ph.D.Assistant Professor of Psychologyand Human DevelopmentJennifer Gilbert, Ph.D., ResearchAssociate in Special EducationTuesday 12:30 p.m.

FEBRUARY 8*Developmental Disabilities

Grand Rounds

Autism Interventions Review [topic]Zachary Warren, Ph.D.Assistant Professor of Pediatrics;

DISCOVERY | Fall 2011

Unless otherwise noted,events are free and open tothe public. Events are subjectto change. Please check thewebsite calendar atkc.vanderbilt.edu or contact(615) 322-8240 or toll-free (1-866) 936-VUKC [8852].

Please keep this calendarand check the EventCalendar on the VKC website for updates. If youwish to receive eventannouncements by email,send your email address tokc@vanderbilt.edu.

For disability-related trainingand other events statewideand nationally, see thePathfinder Disability Calendarwww.familypathfinder.org.

*Event will be held in Room241 Vanderbilt KennedyCenter/One Magnolia Circle

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TRIAD FAMILIES FIRSTWORKSHOPSFree monthly workshops servingparents of children of all agesdiagnosed with an autism spectrumdisorder and professionals Registerat kc.vanderbilt.edu/registration.Information (615) 322-6027 orfamilies.first@vanderbilt.edu

• DECEMBER 5*Communication in Children Who Are TalkingMonday 6-8 p.m.

TRIAD DirectorMelissa McPheeters, M.P.H., Ph.D.,Assistant Professor of Obstetrics andGynecology; Co-Director, VanderbiltEvidence-Based Practice CenterJeremy Veenstra-VanderWeele, M.D.,Assistant Professor of Psychiatry,Director of Fragile X TreatmentResearch ProgramCo-Sponsor Pediatrics Division ofDevelopmental MedicineWednesday 12 p.m.

FEBRUARY 15*Educate to Advocate

For trainees and others interested indisability-related legislative advocacyRegister at kc.vanderbilt.edu/registration. Information 936-8852Wednesday 11:30-1 p.m.

FEBRUARY 16*Lectures on Development and

Developmental Disabilities

Autism [general topic]Sally J. Rogers, Ph.D.Professor of Psychiatry andBehavioral Sciences, University ofCalifornia-Davis MIND InstituteThursday 4:10 p.m.

FEBRUARY 22Neuroscience Graduate

Program Seminar Series

Multisensory Integration of Taste and Smell [tentative topic]Dana Small, Ph.D.Associate Professor of Psychiatry and Psychology, Yale University Co-sponsor Vanderbilt Brain InstituteRoom 1220 MRB III Lecture HallWednesday, 4:10 p.m.

FEBRUARY 28Vanderbilt Kennedy Center

Science Day

Details and registration forthcoming at kc.vanderbilt.eduVanderbilt Student Life CenterTuesday 11 a.m.-4:30 p.m.

MARCH 1*Lectures on Development and

Developmental Disabilities

Cognitive and Neurobiological Mech-anisms in Reading Disability [topic]Ken Pugh, Ph.D., President andDirector of Research, SeniorScientist, Haskins Laboratories, andAssociate Professor of Linguistics,Yale University; Director, YaleReading Center; Professor ofPsychology, University of ConnecticutThursday 4:10 p.m.

MARCH 7-9, 201245th Annual Gatlinburg

Conference on Research and

Theory in Intellectual Disabilities

Theme: Rare and NeglectedIntellectual and DevelopmentalDisabilities: A Case Study in 15qLoews Anapolis Hotel, Annapolis, MDInformation and register atkc.vanderbilt.edu/Gatlinburg(615) 343-5322

MARCH 14*Developmental Disabilities

Grand Rounds

The Elephant in the Room: Poverty, Disability, and EmploymentCarolyn Hughes, Ph.D.Professor of Special EducationHousing First: People ExperiencingHomeless and Mental IllnessMarybeth Shinn, Ph.D.Professor and Chair of Human andOrganizational DevelopmentWednesday 12 p.m.

MARCH 26*Statistics and Methodology

Core Training Seminar

Title TBALily Wang, Ph.D.Assistant Professor of Biostatistics;Biostatistics Coordinator, VKC Statistics and Methodology CoreMonday 12:30 p.m.

BEHAVIORAL HEALTH AND INTELLECTUALDISABILITIES CLINIC For individuals with intellectualdisabilities, ages 17 and up, with be-havioral and mental health challengesContact (615) 343-9710behavioralhealth@vanderbilt.edu

LEARNING ASSESSMENT CLINICMultidisciplinary academic assess-ments of students, 5-25 years, toidentify learning strengths andchallenges and to recommendstrategies to improve academiclearning; Contact (615) 936-5118patty.abernathy@vanderbilt.edu

NEXT STEPS ATVANDERBILTA 2-year certification postsecondaryeducation program for students withintellectual disabilities providingindividualized Programs of Study ineducation, social skills, and vocationaltraining. Information (615) 343-0822,NextSteps@vanderbilt.edu

READING CLINICAssessment and tutoring forstudents through middle schoolContact (615) 936-5118patty.abernathy@vanderbilt.edu

TRIAD SCHOOL-AGESERVICESWith the Tennessee Department ofEducation, TRIAD offers free autism-specific workshops for parents,school personnel, and the community

in locations across the state.Information and registration, contactLinda.Copas@tn.gov, (615) 741-7790See also www.state.tn.us/education/speced/announcements.shtml

• DECEMBER 5 (Knoxville)East Institute

• MARCH 7-9 (Middle Tennessee)Teacher Training Advanced K-12

TAKE PART IN RESEARCHVKC Research StudiesFor children and adults, with andwithout disabilitiesLynnette Henderson (615) 936-0448Toll-free (1-866) 936-VUKC [8852]

• Research Family Partnerskc.vanderbilt.edu/rfpRegister and be notified ofresearch studies

• StudyFinderkc.vanderbilt.edu/studyfinderView lists of studies, criteria, andcontact information

• See also VUMC Clinical Trialswww.vanderbilthealth.com/clinicaltrials

TENNESSEE DISABILITYPATHFINDER MULTI-CULTURAL OUTREACHHelpline, Web-Searchable Database with Calendar andResource Library, Print Resourceswww.familypathfinder.orgEnglish (615) 322-8529Español (615) 479-9568 Toll-free (1-800) 640-INFO [4636]tnpathfinder@vanderbilt.eduProject of VKC UCEDD and TNCouncil on Developmental Disabilities

Fall 2011 | DISCOVERY

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Next Steps at Vanderbiltstudents celebrated Memorial Madness.