Number 44 | Fall 2015/Winter 2016 | Vanderbilt University VKC by the Numbers*

304 research publications by VKC investigators in 2014-2015

TN Disability Pathfinder website had > 160,000 visits from more than 1,152 120,000 Vanderbilt Autism users and received Resource Line calls 1,925 calls and emails

213 VKC Investigators and Members in 30 departments in 7 Vanderbilt schools/colleges

IDD Health Care Toolkit 20,635 website received copies of LEND guides on autism and other disabilities have been 76,812 given to families and service page views by 26,496 users providers since December 2013. over 32,429 sessions

*For FY 2015 unless otherwise noted

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Director’s Message — Of Giants and Legacy

hat a year 2015 has been for the Vanderbilt Kennedy Center as we Funding is crucial to our future, and in this 50th year we W celebrated the Center’s 50th anniversary. We have been looking submitted grant applications for support as a national Intellectual and forward even as we have looked back. Developmental Disabilities Research Center and a national University We kicked off this landmark year on Center for Excellence in Developmental Disabilities. Both January 21 with our Martin Luther King were funded for another 5 years. TRIAD funding through Jr. Commemorative Lecture “The Future of State of Tennessee contracts and federal grants is at its highest Disability Policy” by Andy Imparato, J.D., the level ever. talented director of our national organization, the None of these things would have happened without the Association of University Centers on Disabilities. collective efforts of our researchers, trainees, staff, families, On May 29—50 years to the day of our and State and community partners. founding and also President John F. Kennedy’s As I reflected on our 50th anniversary, the image in birthday—we hosted Timothy Shriver, Ph.D., my mind was this—“If I have seen further than others, it for a special day of visits and a great talk titled is because I have stood on the shoulders of giants” (Isaac “Lessons in What Matters.” Newton). A 12th century theologian, John of Salisbury, adds On September 29, we held our annual to that—“We see more, and things that are more distant, than Science Day but with a twist—renowned they did, not because our sight is superior or because we are neuroscientist Pasko Rakic, Ph.D., spoke, a Elisabeth Dykens, Ph.D. taller than they, but because they raise us up, and by their Annette Schaffer Eskind Chair VKC directors’ panel gave their perspectives on great stature add to ours.” accomplishments and challenges, and over 100 graduate students and Over this year, I have appreciated how our Center was built by postdoctoral fellows shared their research in poster sessions. countless giants, paving the way for others as our Center has evolved. Finally, on October 9, we held a Homecoming for staff and faculty With deference to John of Salisbury, we are all giants, taking turns to who have given years of dedicated service. stand on the shoulders of others and inviting them to stand on ours. We created two VKC videos—a 22-minute documentary produced In daily life, we hardly realize how much more we receive than we by Peabody College’s Lyle Jackson on VKC history and current strengths, give, and life cannot be rich without expressing gratitude, which leads us and an 8-minute overview by Kyle Jonas, a former UCEDD trainee to a reflection from Dietrich Bonhoeffer’s Letters and Papers from Prison: and now staff member. (See back cover for how to view videos.) We “It is so easy to overestimate the importance of our own achievements also launched a 50th Anniversary website—visit the timeline and photo compared with what we owe to the help of others.” gallery.

Associate Director’s Message — Our Covenant Together

elebrating our Center’s 50th anniversary, we have a lot to be proud Health and Human Development, it C of. We have been at the forefront of basic science discoveries related is time to look ahead and not sit on to intellectual and developmental disabilities (IDD) for five decades. our laurels. Still, the best days of the VKC are ahead of us! To fully live up to our amazing We have an amazing group of scientists, a dedicated donor base, an potential, we need to communicate impressive footprint in the community, and strong institutional support. and to listen to each other. Are we These pieces of the puzzle are essential for our continued success, and providing the best and most needed they ensure that the basic and translational IDD research at the VKC services to our IDD researchers? What will continue to push the boundaries of science and result in new is missing and what can take us one groundbreaking discoveries. step further? Are there unidentified “Noblesse oblige,” or “nobility obliges” is a concept that clearly needs? What is the best use of applies to us. The VKC extends beyond mere entitlements and requires our philanthropy, donations, and Karoly Mirnics, M.D., Ph.D. that we fulfill our research responsibilities and reach our full potential. James G. Blakemore Chair institutional support? How can we We must remain nimble, innovative, and vigilant. We owe this to make the biggest difference for you? ourselves, and this covenant cannot be broken. TheVKC leadership cannot and should not decide alone the paths Now that our VKC Intellectual and Developmental Disabilities that will be taken in the future. We need your feedback (kc@vanderbilt. Research Center has been renewed by the National Institute of Child edu). We are stronger together. We are here to serve you.

3 Opening Doors, Transforming Lives

CLANCEY CATHERINE GORDON HOPPER Special Education teacher ACM Lifting Lives I am a graduate of Fisk University (1978). While attending Music Camper Fisk, I was privileged do my practicum studies at the Kennedy My name is Center. I was scheduled for 2 hours a day, 2 days a week. I found Clancey Hopper. myself going on days I wasn’t even scheduled. I loved working I am 26, and I with children with special needs. Upon graduating from Fisk, have Williams I completed an M.A. in special education from Ohio State syndrome. Having University (1979). I found an excellent job teaching students with Williams syndrome has given me special needs in Columbus. I am now preparing to retire after teaching 36 years. I many opportunities and has taught wouldn’t be where I am today had it not been for my experience at the Kennedy Center. me how to advocate for myself. Thank you for my enriching experience with the Kennedy Center. As a result, I was always In 2005, I was contacted by the willing to have student teachers in my room from OSU, Capitol University, etc. I’m so glad Williams Syndrome Association to see if I I taught children with special needs. It has indeed been a wonderful career! would want to take part in a Music Camp. I jumped on the opportunity. While I was TAMMY COX MILLER at this camp, research was conducted to see Home Visiting Program, Demonstration and Research Center on Early how music plays a key role in the lives of Education (DARCEE, early 1970s) those with Williams syndrome and how it I was 2 years old when my mom and I took part in the DARCEE affects the brain. Home Visiting Program. I remember the Home Visitor coming During the week of camp, we take one time with someone who brought a video camera and filmed us part in fun activities. My favorite was baking cookies. They were then able to plug into the TV and play it line dancing at the Wildhorse Saloon. back to us, in the days before VCRs. I remember seeing myself say, Camp concludes at the Grand Ole Opry “Mama, eat your cookie!” We labeled our house with words. For performing our song written during camp. example, our door had a card with the word “door.” Sometimes the Home Visitor would Most recently, I got to perform “Bright drive us to class with the other children and parents. During one of the group classes, a Eyes,” written at the 2014 camp, in Dallas guinea pig was brought out for us to pet. Today, I work with the Head Start program, for the ACM Gala with fellow campers and including with Home Visitors in two counties. The Band Perry! ACM Lifting Lives has fully funded our camp for 6 years. SHIRO AND TAMMY ONEDERA In Dallas, I started communicating Parents with Pete Fisher, General Manager of the Nervous, hesitant, exhausted, and scared. That is how our family Grand Ole Opry, about job opportunities. could have been described when we first walked through the I applied for a part-time tour guide, had elevator doors at TRIAD in the Vanderbilt Kennedy Center. Our an interview, and I have been an employee youngest son Cade, who has autism, needed help. Our whole at the Grand Old Opry for 2 months now! family needed help in understanding that life shouldn’t be defined I get to share my love and knowledge of by big obstacles, but rather by the determination to overcome Country Music!

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them—together. We learned SO much about to almost 70 sight words and loves to read. work hard and never give up. And a job is how to thoughtfully apply ourselves, instead His speech has improved as well. Being given a important in life. This college experience really of aimlessly exhausting ourselves. We think partial scholarship was like being given a space has made me a better person. Next Steps has TRIAD is an acronym for Truly Remarkable to breathe. The mountain became a hill that we change my life I know it will change yours. I Individuals Altruistically Determined—to could climb without a safety line. can’t wait to see what my future holds. make lives better! Their mark, indelible. Our appreciation, undeniable. Thank you, TRIAD! MEGAN HUMBURG MICHAEL FLOM Former Reading Next Steps at DARA BACON Clinic tutor Vanderbilt Ambassadore KidTalk Research Working in the My friends have Participant Reading Clinic has often asked me why When our son Uriah taught me how to be a I mentor those with was born with Down more effective teacher developmental and syndrome, we knew and has encouraged intellectual disabilities. Vanderbilt would be a me to view learning I am a Next Steps great resource. It wasn’t as a richly complex mentor because I want until this year that we process. Before my the students to achieve experienced the jewel known as the time as a tutor, I often fell into the trap their maximum potential, even if it Vanderbilt Kennedy Center. My husband is of viewing kids as either “good students” or requires many helping hands. TheNext Steps an assistant professor, and I work in preschool “bad” ones. Working closely with struggling program requires all participants to form their literacy outreach. We are an educated family readers has taught me that all students have the foundation early and then constructively work that has access to resources and materials, yet potential to become engaged and passionate towards the finished product. We mentors serve the KIDTalk study helped us inspire language learners. As teachers, it is up to us to tap into as the engineers in Next Steps, but the students development in our son like never before. that potential. are the architects—and I wouldn’t want it KIDTalk has been the most practical, hands-on any other way. Interacting with students with learning experience we’ve had as a family. We’ll JAMIE GALVIN intellectual disabilities is how I and my fellow continue benefiting from the strategies and Next Steps at Vanderbilt student mentors have become more human. education long after the study is finished. As I started my first year in college I was nervous and scared. But I got there and SANDRA GINN SANDRA BELD discovered I can do this Participant, Parent of Reading even with my learning Prader-Willi Syndrome Clinic student disability. That doesn’t Clinical Trial My son had barely 30 define who I am. My Three years ago, sight words when we personality defines who I would not have started at the Reading I am. I made so many thought we would ever Clinic and hated friends I love so much. be where we are today. reading. Reading has Ms. Lindsey has help Thanks so very much always been a struggle me with advice about Continued on page 6 for him. Now he is up jobs. She said we should

ELISE MCMILLAN Vanderbilt University and and their family in memory of their son Britt. Parent of Will and Co- Vanderbilt University Medical Individuals with disabilities and their families Director of the VKC UCEDD Center, families are still making play a strong role in our Leadership Council From the time Will was born that difference. and Community Advisory Council. 27 years ago with Down So many of our major I’m so thankful that that welcoming spirit syndrome, the Vanderbilt initiatives have had family that we felt in 1988 remains as a hallmark of Kennedy Center has been involvement and financial our Center today. a partner with our family support, whether it’s the in helping him achieve Annette Schaffer Eskind Chair Pictured page 4 top: Darius Rucker and ACM his dreams. It’s fitting that the Center was held by our Director, the Next Lifting Lives Music Campers perform at the 46th begun in a partnership with the Kennedy Steps at Vanderbilt postsecondary program Academy of Country Music Awards. Photo Getty family who knew firsthand what life was like begun with support from Linda Brooks and Images/Courtesy ACM Lifting Lives. for an individual with a disability and family her family, or the Britt Henderson Training members. Fifty years later, in partnership with Series started by Carol and Bob Henderson

5 for including Rebecca in the study. She has SAMANTHA Opera thought of and provided for the been very successful on the [trial medication]. GOLDMAN audience. The story boards, dim lighting, and Without your help in that short half-a-day UCEDD Trainee quieter voices the singers used were all helpful [visit], we would not be where we are today. I 2012-2016 for our family. Even though we did not use the am so thankful for the work and research and As a long-term quiet space this time, it was stress-relieving just time and so much of your life that you put into UCEDD trainee, to know that it was there if needed. We don’t Prader-Willi syndrome. I have had amazing go out very often as a family. The movies are opportunities to too loud. Food sensitivities make eating at KELLY connect with the restaurants difficult. It WOLENBERG larger disability community as well was very nice to have a LEND Trainee as to learn from experts. This has impacted family event we could 2013-14 my personal and professional growth, helping go to. As a Vanderbilt me to develop valuable skills and to become medical student, I was fully engaged in learning opportunities. This JEANETTE PIERCEY already committed addition to my formal Special Education SENSE Theatre parent to interprofessional program has truly enriched my experiences as a Abby loved SENSE learning and Vanderbilt student. Theatre [“a stage of collaboration. For hope for children my continuity clinic, I worked in NOAH SPIEGEL with autism”]. It was wonderful seeing Pediatric Neurogenetics and Metabolism Nashville Opera CEO all the children [with and without autism] along with a nurse practitioner student and a Working with TRIAD is one of the most enjoying themselves. Abby could be herself pharmacy student. However, when I joined the rewarding experiences of producing our and felt really comfortable. She was outgoing, LEND program, my interprofessional scope Nashville Children’s Opera On Tour she had fun, she had no fear. She felt accepted broadened dramatically to include audiologists, program. We see joy on children’s faces as they and welcomed. She made wonderful friends physical therapists, and psychologists, among engage in the performances, and experience and looked forward to going every day. Abby others. I quickly learned that only a small part the elements of the opera in ways that enliven learned that new things can be fun. It was of pediatric health care is provided within the theatrical experience. We see parents who great! a doctor’s office. Professionals from many are able to experience a community event free disciplines improve and sustain the health of judgment and fear, where they know their SADIA AND BINTA BARROW of pediatric patients in child care programs, child is able to experience the opera however Parents (from Gambia) schools, legislative offices, and even in a child’s they choose—singing along, screaming with My daughter, Binta, uses a wheelchair for home. LEND enhanced my vision of ideal delight, moving about freely—whatever moves sitting and going. Therefore, she has to have advocacy and teamwork, while also providing them to enjoy the performance. a wheelchair accessible van to travel back me with the resources and connections to work and forth to her doctor’s appointments, towards making a difference. I will continue to PARENT physical therapies twice a week, and out to rely on the expertise of my LEND colleagues I can’t believe the number of accommodations the communities. She has one which has throughout my career. that TRIAD and the Nashville Children’s over 200,000 miles. In August 2015, it had

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a major problem that JAN LINCOLN Pathfinder during one of the hottest days of cost over $800. Being Special education summer, after Annie’s air conditioner had a single parent with teacher, Centennial failed. Because of multiple sclerosis (MS), the a child with multiple High School heat triggers bad muscle spasms and extreme disabilities who depend With 31 years of fatigue in Annie. Pathfinder immediately on people for all her experience in special connected with the national and local MS daily life routines, this education, one would society, and mailed her an application for is a lot of money for think I had “heard it assistance. “It was so quick,” said Annie. me to come up with, all.” The Britt “Within 24 hours they had approved it and the for the van to be fixed. Henderson Training Series for check to Lowes was in the mail for us to get the I had to cancel all her appointments for two Educators—Roadmap to Employment new air conditioner….It was superfast and so weeks, which was causing problems on her offered me so much up-to-date, useful easy. Everyone was so nice. I was so thankful, legs contractions. Pathfinder’s Multicultural information that my classroom has been and Pathfinder stayed with me through the Outreach Program helped us get part of the enhanced and improved. whole thing to make sure it did go through.” amount for my daughter’s van to be fixed. I can’t thank Pathfinder enough for the great VIENNEAU FAMILY job they are doing to help special need people We are so thankful or family members get the services or help to have had the we need to care for our love ones. May God opportunity to continue to give you all you need to continue participate in the Opera thought of and provided for the to serve people with special needs. My Putting Faith to audience. The story boards, dim lighting, and daughter, Binta and I (Sadia) love you all!!! Work Initiative. quieter voices the singers used were all helpful Not only was this for our family. Even though we did not use the JUDY ANDERSON a good experience quiet space this time, it was stress-relieving just Parent of Project ERIC participant in meeting kind and to know that it was there if needed. We don’t Our son Brandon has Down syndrome PEDIATRICS PROVIDERS caring individuals, but the program go out very often as a family. The movies are and participated in Project ERIC, which is AND STAFF also worked in securing a job for our son. It is too loud. Food sensitivities make eating at Enhanced Reading University Pediatrics is a primary care clinic through creative initiatives like this [working restaurants difficult. It Instruction for that relies on area agencies’ services as we with congregations] that other individuals with was very nice to have a Children with Down provide the best possible care for our patients. disabilities will be able to secure employment family event we could syndrome. It involved Tennessee Disability Pathfinderoffers opportunities that otherwise might not be an go to. reading passages and essential information and invaluable assistance option for them. Preston stated that everyone learning a strategy to our medically complex patients and their was so kind and he appreciates everyone’s help. JEANETTE PIERCEY to identify pronouns families. Not only do we rely on Pathfinder for Because it was such a good experience for SENSE Theatre parent and answer “where?” the most current resources, but Pathfinder also our family, I plan to stay involved as a way of Abby loved SENSE questions, as well as assists our families in navigating the sometimes giving back. Theatre [“a stage of answering in complete confusing and often overwhelming path of hope for children sentences. I will never forget when caring for a child with a disability. A specific Pictured page 6 top: Jack and the Beanstalk with autism”]. It was wonderful seeing I listened in one day on Brandon and Kim, example from our practice is a young boy with performance at the Nashville Opera. Photo by all the children [with and without autism] and the joy I received hearing him answer autism. Since his father passed away his mother Kyle Jonas. enjoying themselves. Abby could be herself the question and read the sentence. My sweet did not know where to turn for support. and felt really comfortable. She was outgoing, boy was reading, yes, my tears flowed with Pathfinder has helped her complete paperwork TRIAD workshops served she had fun, she had no fear. She felt accepted such pride!! So grateful to VKC and the many and connect with various referrals and and welcomed. She made wonderful friends dedicated people to provide all of the programs resources that her son needs. Pathfinder is a and looked forward to going every day. Abby to our children. wonderful resource for our clinic, our patients learned that new things can be fun. It was and our community. 648 PARENT OF TEEN WITH AUTISM, great! teachers, caregivers and VAP-T participant ANNIE MARTIN other providers of services SADIA AND BINTA BARROW It was good to know that there are options “It took so much Parents (from Gambia) for our kids to have a better life….I felt stress off me from the to children and adolescents My daughter, Binta, uses a wheelchair for empowered leaving this [Volunteer Advocacy day I talked to you,” with autism and IDD sitting and going. Therefore, she has to have Program-Transition] session….I think it Robertson County a wheelchair accessible van to travel back made me feel as if someone is out there on our resident Annie Martin and forth to her doctor’s appointments, side when that’s not usually the case. (Outside told Tennessee VKC programs reached all physical therapies twice a week, and out to of you guys, of course.) Disability Pathfinder. Tennessee counties the communities. She has one which has “I knew it was taken care of. I knew it 95 over 200,000 miles. In August 2015, it had was!” Her sister first put her in contact with

7 Celebrating Our Golden Anniversary

THE FUTURE LESSONS IN WHAT MATTERS OF DISABILITY May 29, 50th Anniversary Community Celebration POLICY How remarkable it is how these individuals [with intellectual January 21, MLK disabilities], for whom institutionalization was one of the only Commemorative options their families were given… that these individuals have been Lecture able to come out of the shadows and into their communities with I congratulate their families…..You will miss an opportunity to see and learn the Vanderbilt something if you view someone solely by his or her disability. We Kennedy Center have closed the gap in some ways, but we have only scratched the for your 50 years surface. of leadership….Whether it is I hope that, in the next 50 years, [the Vanderbilt Kennedy Center] challenges itself to inclusive higher education, community a new intensity… that it fights for the human side of human rights. I hope we challenge living, using technology to support self- ourselves to a new paradigm of education that recognizes not just the needs and services for determination, diagnosis at earlier ages—all people who have differences, but also their gifts and talents….I hope this Center commits the things the [national developmental itself to a research agenda that fights a culture of elitism that says that the only thing disabilities] network has developed and we want to research is ways to either cure or to prevent, as though everybody who has a done has translated into better quality of difference is somehow no longer worthy, and commits itself again to a culture of research life for people with disabilities….If you that reveals gifts, gifts in the life cycle, gifts in ways we barely understand. ask what is the future of disability policy, Excerpts, Timothy Shriver, Ph.D., Chairman and CEO of it is leveraging all these things to accelerate progress so we start to see more labor force VKC SCIENCE DAY participation, less poverty, higher quality September 29, 50th Anniversary of life, more supports for families, more “Neuronal Migration—Relevance to Intellectual and sustainable approaches to whatever money Developmental Disabilities” we spend to support this population, Understanding human cerebral cortex is the most important getting a good return on that investment in scientific quest, so you—the Kennedy Center—are working on the terms of outcomes. most important thing in the world….There is no simple solution to Excerpts, Andy Imparato, J.D., Executive complex problems [so scientists must] have patience. Director, Association of University Centers on Excerpts, Pasko Rakic, Ph.D., Dorys McConnell Duberg Professor of Disabilities Neuroscience, Kavli Institute for Neuroscience,

Directors Panel We celebrate the amazing people who made [50 years of accomplishments] possible. VKC partnered with 8 State –Karoly Mirnics, M.D., Ph.D., VKC Associate Director of Tennessee Departments Where might the Center be in another 10, 20, 50 years? In the future, if the VKC stays as nimble as it has been, it will be plumbing the depth

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Six Words on “We must find time to stop and thank the people who make a difference in our lives.” Disabilities and -JOHN F. KENNEDY Abilities

For the Center’s 50th anniversary, we of issues impinging on the lives of children over the next 5 decades. The future does not challenged individuals with disabilities, look to me as bright for children as in the past—issues of world conflict render children family members, educators, and others defenseless, climate change impacts greater on children than on adults, food scarcity and to express their experiences or views of hunger find children first, immigration tends to push children forward as pawns, public disabilities in only six words, which are school disintegration impacts poor children first and worst, child health and prevention posted on our 50th Anniversary website services tend to be cut from budgets first…. We must ramp up resources to train budding (vkc.mc.vanderbilt.edu/vkc/50). Read their young researchers and attract more of our brightest away from a career in hedge funds to a “six words.” What are your “six words”? life of child development research and advocacy. • Want to, can do, did do! –Donald Stedman, Ph.D., VKC Director (1970-1971) • People with disabilities give back, everyday In the future I envision a center with an ever wider scope, not a place but a concept • Every day, new chances to grow involving people all over the world, a time when barriers between basic and applied • We all deserve the same opportunities research will have disappeared in favor of mission-oriented research. • Redefining disabilities—just dump the –H. Carl Haywood, Ph.D., VKC Director (1971-1983) “dis” • Disabilities unite more than they [I hope that we will] create opportunities for individuals with special needs or challenges to separate become more deterministic about their own lives. • Utterly Unexpected, Often –Pat Levitt, Ph.D., VKC Director (2002-2008) Challenging, Unforeseen Blessings • Disability notwithstanding, our lives [I hope that] disabilities will be viewed as a natural part of the human experience, that this are amazing will be a center on the science of human flourishing for all across the life span. • Advocating together, we change the –Elisabeth Dykens, Ph.D., VKC Director (2008-present) world • Deep down, we are the same HOMECOMING • I’m a whole person, like you October 8, 50th Anniversary • No normal, open my heart, grief Gathering of VKC staff and faculty across the • Live and love like all others years. • Conquering obstacles while always staying positive Pictured page 8 top: Visit by Andy Imparato, • Loving who I am every day J.D., Executive Director, Association of • A family affair—struggles and University Centers on Disability (AUCD). successes Pictured page 8: Timothy Shriver. Photo • Widening my worldview, moved to courtesy Special Olympics. Pictured page 8: Pasko Rakic. Photo by Terry Dagradi – Yale action University. Pictured page 9 right: Current and former VKC staff. Linda Upchurch, JoEllen • Challenging Life with my unique me! Fowler, Peggy Chatfield, Sue King, and Beverly Hand. Pictured page 9 below: Panel Discussion • Family, friends, support, Special with Pat Levitt, H. Carl Haywood, and Elisabeth Dykens. Photo by Anne Rayner. Olympics, YMCA, travel • I am an INDIVIDUAL with autism • Life altering, in a good way • Not a burden, but a blessing • Not much different than anyone else • Capable, with creativity, and good at loving

UCEDD provided continuing education to over 1,700 individuals

9 Unexpected Paths to Discovery

NICHOLAS HOBBS DISCOVERY Grants are $25,000-$30,000 on average, for changes in sensory function, or at least in GRANTS 12 months, nonrenewable. Since 1998, $1.6 sensory networks.” Discovery involves risk-taking. When hundreds million has been invested in Discovery Grants. That serendipitous discovery led to Wallace’s of thousands of dollars are needed for a single transition into research on multisensory large-scale study, it is reasonable that public FROM DYSLEXIA TO AUTISM processing in individuals on the autism funding agencies like the National Institutes In 2006, Mark Wallace, Ph.D., was jointly spectrum. He began collaborating with VKC of Health or private foundations require recruited to Vanderbilt by Hearing & Speech autism researchers to investigate audio-visual evidence—pilot data—showing the merits Sciences and the VKC. Wallace now holds the integration differences in children with autism. of a scientific hypothesis or approach before Louise B. McGavock Chair; is professor of “The real Holy Grail in my mind,” Wallace awarding research grants. But how to fund pilot Hearing & Speech Sciences, Psychiatry, and said, “is what those changes in sensory research? Psychology; and is director of the Vanderbilt function mean for these children in their real In 1998, the Vanderbilt Kennedy Center Brain Institute and associate director of the world activities. We want to be able to use (VKC) and its fledgling Leadership Council of Vanderbilt Conte Center for Neuroscience. tasks developed in our lab to improve sensory community supporters devised a solution. They “Previously, I had worked exclusively with function in these children. We hope that by created the Nicholas Hobbs Society to promote animal models, investigating multisensory improving multisensory function, we’ll see philanthropic giving. In turn, those gifts have function in dyslexia,” Wallace said. “Coming to transfer into real world domains like social funded an annual competition for Hobbs the Vanderbilt Kennedy Center allowed me to communication.” Discovery Grants open to VKC researchers to put my work into a human context, specifically fund innovative interdisciplinary approaches or the context of developmental disabilities.” RESEARCH PATHWAYS interventions. Often, the risk-taking produces In 2009, Wallace and Malcolm Avison, The seeds of findings in Wallace’s Hobbs promising pilot data, which allows VKC Ph.D., professor of Radiology and Radiological Discovery Grant have since led to significant researchers to compete successfully for large Sciences, received a Hobbs Discovery Grant to research projects from various funding sources, federal or foundation grants. investigate the neurobiological underpinnings each another step in understanding sensory Since 1998, 32 of 69 Discovery Grants of developmental reading disabilities, with a and multisensory functioning in children with have resulted in subsequent research funding. focus on multisensory networks (i.e., vision autism. Each $1 invested in a Hobbs pilot grant returns and hearing), and to explore the feasibility of With funding from the National Institute approximately $30 through externally funded remediation methods based on a multisensory on Deafness and Communication Disorders, grants. This internal grant mechanism also has platform. Wallace and Stephen Camarata, Ph.D., helped attract junior researchers into the field “The brain imaging findings were muddy,” professor of Hearing & Speech Sciences and of intellectual and developmental disabilities Wallace said. “It wasn’t clear whether the Psychiatry, studied the relationship between research, and has helped senior researchers hypothesized differences in networks were sensory processing in children with autism explore new areas. there, at least to the degree that we thought and changes in communication skills in these Today, like other Vanderbilt donor societies, they would be. But—this is the real twist and children. Hobbs Society members are recognized for gifts turn in this story—two of the subjects recruited “If these changes do exist, could this be a of $2,500 or more annually. Some donors have for the dyslexia study were also on the autism platform for developing better remediation? made larger gifts and have targeted a specific spectrum. Their brain images were by far the That was the goal,” Wallace said. area, e.g., autism, Down syndrome. Discovery strongest evidence that there were substantial Another unusual twist in the road involved

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a project in collaboration with Paul Newhouse, The most ecentr opportunity came with among the 69 Grants awarded to date. M.D., Jim Turner Professor of Cognitive Dis- the 5-year renewal of the VKC Intellectual and Although dollars of funding generated and orders; professor of Psychiatry, Pharmacology, Developmental Disabilities Research Center. In number of research publications are important and Medicine; and director of the Vanderbilt addition to funding research support services metrics, the greatest metric ultimately is how Center for Cognitive Medicine. Their study, for 46 VKC investigators who lead 69 research discoveries can lead to improving the lives of funded by the National Cancer Institute, was projects, this grant from the National Institute individuals with developmental disabilities. aimed at providing the first comprehensive view of Child Health and Human Development “We are enormously grateful to all Nicholas of how multisensory function changes over the funds a research project, which Wallace leads. Hobbs Society members and other donors for lifespan. The long-term objective is gaining a better their generosity and vision,” said Elisabeth “This esearchr was in the context of aging, understanding of sensory and multisensory Dykens, Ph.D., VKC director. “They make but for me, the fact that there would be devel- contributions to autism and testing whether possible these innovative, potentially life- opmental changes in audio-visual integration behavioral training methods focused on sensory changing Discovery Grants.” related to cognition provided a great founda- function may have potential for remediation. tion to compare with children with autism.” “We can really do something special now,” Pictured page 10 top: Mark Wallace, director The imonsS Foundation Autism Research said Wallace. of the Vanderbilt Brain Institute and VKC Initiative (SFARI) awarded Wallace a SFARI investigator. Photo by Daniel Dubois. Explorer Award to better define how alterations GRATITUDE in sensory function in autism relate to changes How Wallace’s Discovery Grant has led to in performance in a host of cognitive domains. a new research program is but one example VKC by the Numbers*

Trainees of 5 universities in 13 disciplines make up the Shared Tennessee Vanderbilt LEND Training Kindred Stories of Disability with all 37 children and Reading Clinic 132 Tennessee adults with sessions provided legislators and the disabilities 63 students with 106 research posters 11 members of exhibited 1,512 hours of presented at 2015 the Tennessee 91 art works tutoring VKC Science Day Congressional Delegation UCEDD mentors 44 TennesseeWorks website had long-term trainees and WWW over 15,000 website sessions 46 intermediate trainees by almost 10,000 unique users in 15 disciplines

Next Steps students had support from 68 Vanderbilt student Ambassadores— 26% special education majors, 15% other Peabody departments, 59% in other fields (2014-15) TRIAD provided training on autism spectrum disorder 13 activities of the Multicultural 140 educators focused on “High to over 475 Outreach Program reached Expectations in Competitive Work” Tennessee school 393 participants in 11 languages in Britt Henderson Training Series personnel

*For FY 2015 unless otherwise noted

11 Vanderbilt Kennedy Center Vanderbilt Kennedy Center Leadership Council Discovery is a publication of the Vanderbilt Kennedy Center Mrs. Donna G. Eskind, Chair designed to educate our friends and the community, from Mrs. Cathy S. Brown, Past Chair Nashville to the nation. The Center is a Eunice Kennedy Mrs. Annette Eskind, Past Chair Shriver Intellectual and Developmental Disabilities Mrs. Barbara Gregg Phillips, Past Chair Research Center funded by the National Institute of Child Health and Human Development, Mrs. Honey Alexander Mrs. Lorie Hoppers Lytle and a University Center for Excellence in Developmental Mrs. Melinda Balser Mrs. Anne Wallace Nesbitt Disabilities (UCEDD) funded by the Administration on Mrs. Jean Ann Banker Mrs. Shirley F. Speyer Intellectual and Developmental Disabilities (AIDD). Mrs. Melissa Beasley Mrs. Sue Spickard Discovery is supported in part by Grant No. U54HD083211 Mrs. Ann Bernard Mrs. Mary Layne Van from EKS NICHD, AIDD Grant No. 90DD0807-01-01, and Mrs. Barbara T. Bovender Cleave LEND Training Grant No. T73MC00050 MCHB/HRSA. Mrs. Linda Brooks Mrs. Patricia W. Wallace Vanderbilt University is committed to principles of Equal Ms. Mary L. Carlson Opportunity and Affirmative Action. ©2016 Vanderbilt Mrs. Ann Eaden Ex-Officio Members Kennedy Center, Vanderbilt University. Mr. Glenn Funk Ms. Kim Bundy Mrs. Bernice Gordon Mr. Chris Collins Elisabeth Dykens, Ph.D., Kennedy Center Director; Mrs. Carol Henderson Dr. Elisabeth Dykens Karoly Mirnics, M.D., Ph.D., Associate Director; Mr. Robert W. Henderson, Jr. Mrs. Elise McMillan Jan Rosemergy, Ph.D., Deputy Director and Mrs. Gail Gordon Jacobs Dr. Karoly Mirnics View 50th Anniversary Director of Communications; Mr. Robert E. Landreth Dr. Jan Rosemergy Tim Stafford, M.M.H.C., Director of Operations Mr. and Mrs. Chris and Mr. Tim Stafford Videos Online UCEDD: Elisabeth Dykens, Ph.D., Co-Director; Becky Link Elise McMillan, J.D., Co-Director and Community Service • Creating Hope: A History of the Vanderbilt and Technical Assistance; Evon Lee, Ph.D., Training; Kennedy Center (~20 minutes) - Documentary of Robert Hodapp, Ph.D., Research; Sign Up for VKC Notables national progress and this Center’s contributions, Jan Rosemergy, Ph.D., Dissemination In this monthly e-newsletter read about discoveries and narrated by award-winning actor Brian Dennehy LEND: Tyler Reimschisel, M.D., Director; best practices that are opening doors for children and Evon Lee, Ph.D., Associate Director adults with intellectual and developmental disabilities and (Lyle Jackson, Producer). TRIAD: Zachary Warren, Ph.D., Executive Director; their families. Send your email address to kc@vanderbilt. Pablo Juárez, Director edu to subscribe. • Opening Doors, Transforming Lives (~9 minutes - Highlights history and current activities (Kyle Discovery: Editor: Jan Rosemergy, Ph.D. Contact Us Graphic Designer: Kylie Muccilli Jonas, Producer). Photography: istockphoto.com; Alec Lindner; Kylie Email [email protected] Muccilli; Vanderbilt Photography General Info (615) 322-8240 [local] (866) 936-8852 [toll-free] • View videos at vkc.mc.vanderbilt.edu/vkc/50/ Giving vkc.mc.vanderbilt.edu/vkc/giving/ multimedia/ and share on social media. Find Us...

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