University Place

cc >> So as we take our seats, I want to welcome you to the Waisman Center. My name is Marsha Seltzer and I'm the director of the Waisman Center, and I'm just thrilled to be here with you today for the eighth,

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A Day With the Experts that's cosponsored by the Autism Society of Greater Madison and the Waisman Center and the Friends of the Waisman Center. I just want to say one minor note and then launch into our program today. The minor note is a real point of excitement for us. This is the inaugural event in our auditorium since we have reupholstered and reconstructed our chairs. So you are now sitting in brand new seats. Our last event, which was in December, the people here were sitting on seats that were 35 years old. So be comfortable today.

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So I'd like to just tell you a little bit about the Waisman Center and what we do here before launching into our program. So this is the mission of the Waisman Center is to advance knowledge about human development, developmental disabilities and neurodegenerative diseases throughout the life span. And I particular like this picture because it emphasizes the family context of what we do and also the life span context of what we do. And for those of you who have been here before, you've seen this picture because I like to use it in our presentations. So a neurodegenerative disease is defined as a disease where the onset can actually be any point in the life course but oftentimes later in the life course. A neurodegenerative disease affects a person's life in multiple significant ways. It lasts indefinitely. It's often the cause of death. And we know many common neurodegenerative diseases like Parkinson's disease or ALS which is Lou Gehrig's disease, Alzheimer's disease, but there are also neurodegenerative diseases of childhood, and we work in that area too. A developmental disability is similar, but the onset is prenatal or very early in the life course. It affects a child's development in multiple and significant ways and it lasts indefinitely, although the course of development changes what developmental disabilities look like as a child grows up. So examples, of course, include autism, but also Down syndrome, cerebral palsy, fragile X syndrome, other types of intellectual disability. We here at the Waisman Center work on all of these conditions. The CDC recently gave us some new estimates of the prevalence of developmental disabilities, and they estimate that one in six children have a developmental disability. One in six kids in the US. We can imagine what that prevalence would be internationally. And this is a 17% increase between the last time they came out with their prevalence estimates of developmental disabilities, and this was based on a study of 120,000 kids between the age of 3 and 17 years of age. Of course, in addition to implicating autism in terms of the rise of the prevalence of developmental disabilities, they also implicate the rise of attention deficit disorder. Of course, everything is about to change in terms of some of our definitions, as we well know, and so the prevalence will be potentially affected accordingly. So when I talk to people, I try to tell them that the Waisman Center is aimed at discovering the three Cs. The three Cs are our overarching goal and that is searching for discovering the causes of developmental disabilities and neurodegenerative diseases, the consequences for these conditions for the individual who has the diagnosis, for the family, for society at large, and also to seek cures and treatments for these conditions because ultimately our goal is to improve the quality of life for individuals with developmental disabilities and neurodegenerative diseases and their families. And using the example of autism, I can share with you some of the kind of work that we are doing, and some of this is what you will be hearing about today. So, we ask questions about what is the cause of the rising prevalence of autism. Some of our research here is focused on that. What is the role in genetics in causing autism? In terms of consequences, we ask questions about what the lifetime cost of care is for a person with autism, what are the consequences for the family, how do we differ, how do people with autism differ in brain function and structure from people without disabilities. And we also ask questions about what targeted medical treatments and educational services and other interventions may reduce the severity of autism. Two of the topics today have to do with the question about how people with autism differ in brain function and structure and also targeted interventions. And you'll hear more about that. I thought I would tell you a little bit about the history of the Waisman Center. People often ask, why is it named the Waisman Center? Who was Waisman? And how did it come to occupy such a large footprint on the campus of the University of Wisconsin Madison? So the precursor to the Waisman Center was established in 1963. It was an addition built to a building in the center of campus, the Orthopedic Children's Hospital which no longer exists but it did then. This addition was built with a grant from the Joseph P. Kennedy, Jr. Foundation and it was called the Joseph P Kennedy, Jr Memorial Laboratories and Dr. Harry Waisman was the director of these labs. And there you see a photograph of Senator Ted Kennedy when he and his sister, Eunice Kennedy Shriver, visited the campus to celebrate this grant. He was just elected to the Senate, I think he was in his late 20s at that point. And on the occasion of the visit by Senator Ted Kennedy and Eunice Kennedy Shriver to the University of Wisconsin, President Kennedy sent a telegram. I have the original in my office. It's really thrilling for me to see this. It's really interesting for young people to see it too because nowadays many people have never seen a telegram firsthand.

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So I'd be glad to show it to you. It's really cool. But let me just read to you some of his words because they are inspiring. He said, it is my hope that through the facilities of this and other such laboratories throughout the country, many more of the causes of mental retardation, which of course was terminology that was current then, now afflicting millions of Americans will be discovered and that preventive measures to this most serious medical problem will be developed. My special good wishes go to Dr. Waisman on the culmination of his dream and to many young people who, through his efforts and that of the University of Wisconsin, will be able to enter and soon conquer the vast field of mental retardation and its attended problems. John F. Kennedy. And for the history buffs in the room, take a look at the date on the telegram, which is on the upper right hand corner of the screen, and you will remember that this was sent two days before President Kennedy's assassination. So when we think about the beginnings of the program that today occupies the Waisman Center, it goes back to this date when the Kennedy family, the Kennedy Foundation, the president of the University of Wisconsin and Dr. Harry Waisman all came together and celebrated the establishment of the program that now occupies this building. So who was Harry Waisman? He was the director of research at the Joseph P Kennedy, Jr Memorial Laboratories here at the University of Wisconsin. He was a pediatrician and he had a PhD in biochemistry from the university. He was a Badger. He pioneered research on childhood disability. He worked on polio and PKU, phenylketonuria. And he not only was a scientist, he also took care of children who were affected by developmental disabilities, particularly metabolic disorders. And he was a public policy advocate. He advocated for mandatory newborn testing for genetic diseases so that babies who carried genes that caused specific disabilities would be identified early and treatments could be provided to them. So I like to think of Harry Waisman as a role model for us today because we do provide services, we do conduct research and we are advocates for improving public policy for developmental disabilities. So the building that we occupy today was supported by a federal grant. The construction grant was written by Harry Waisman, so the federal government paid for the construction of this building, and you can see him with the first shovel of dirt when the construction began. The building opened in 1973, but tragically, Dr. Waisman died of a bleeding ulcer during the construction of the building at the age of 58. And so the Kennedy family asked the University of Wisconsin to name this building in memory of Dr. Waisman instead of in memory of Joseph P Kennedy, Jr who was to be the name on our building. So we are part of a network of centers around the United States. We are the only center that houses both the multi-disciplinary research center and also a clinical and service and outreach center, and together both components of the Waisman Center are needed for translational research and that's research that translates basic findings into services and treatments. I've been asked whether we are part of the University of Wisconsin. We are. You can see the reporting relationship up from me to the dean of the graduate school who is my boss. He then reports up to David Ward who is our chancellor. But we have faculty from all of the schools and colleges listed on the left side of the screen. The College of Agriculture and Life Sciences, School of Education, Engineering, School of Human Ecology, College of Letters and Science, School of Medicine and Public Health, Nursing, Pharmacy, and Veterinary Medicine. So it's very inter-disciplinary. We have faculty from 27 departments in these various schools. And about 55 faculty members from these 27 departments all work together here and elsewhere on campus to try to advance our mission. We have about 600 people who work here. If you want to think about the facts and figures of the Waisman Center, it's about 250,000 square foot building. We have about 5,000 patient visits a year. We have about 90 grants from the NIH, and we have multiple centers within our center. I don't want to dwell on the facts and figures, but I do want to acknowledge the commitment of the University of Wisconsin to developmental disabilities because it's been a long-standing commitment on the part of the university to allocate space, allow us to control what happens in this space and have it be mission relevant to autism, to Down syndrome, to other developmental disabilities and neurodegenerative diseases. And that's a big commitment on the part of the university. We carry out research, training, service and outreach activity here. We do research on child development, and you can see a child being tested for hearing and the ability to distinguished spoken words from noisy sounding backgrounds. Some of our laboratories look like this. Other labs do more biological research. We are the location of the neural stem cell program of the University of Wisconsin where we use different types of stem cells to study brain development. Researchers here have discovered how stem cells can be turned into neurons and into other types of brain cells, and we're working to discover how stem cells can be specialized and customized to treat diseases that affect the brain, the eye and the spinal cord. We also have a facility, Waisman Biomanufacturing, which is intended to produce pharmaceuticals for early stage human clinical trials. To go into the facility, you have to dress up like this, but there are windows through the facility and if you would like to come back for a tour at any point we could let you look in through the windows and see what happens. The Waisman Brain Imaging Facility is a really unique facility, and we'll be hearing more about that from one of our speakers today because it's focused on using brain imaging techniques for research. It's not a clinical side. It's focusing on using MRI and PET scanning for studying brain development and function. The Center for Investigating Healthy Minds is the newest center within our center. You can see a photograph there from May 2010 when the Dalai Lama visited the Waisman Center to celebrate the establishment of the Center of Investigating Healthy Minds. The Dalai Lama was on the stage here. The audience, you can see, were sitting in the old chairs.

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And it was a great honor and privilege and quite a spectacle to have the Dalai Lama come visit here at the Waisman Center. We train students, undergraduates, graduate students and postdocs who are going to develop their capacity for future careers in research and clinical service. We don't necessarily know exactly the number, but we estimate that more than 10,000 students have been trained here over the years. So it's a big commitment again and a big contribution. We have a preschool, the Waisman Early Childhood Program, that serves about 85 children between the ages of birth and five, really one and five presently, and up to one-third of the children in each of the classrooms has a developmental disability and many of these children have autism diagnoses. And this program is a national leader in how to have inclusive early childhood education, so we're very pleased about that. We have a series of clinics. I'm not going to read all the names. You can see them on the screen, but our goal is to provide clinical services, diagnostic, and also follow along services for families who have a son or daughter with a need for one of these clinics. We have an art collection by people with disabilities, and the art is displayed all over the building. We have 150 pieces of just beautiful art collected from countries all over the world by people with disabilities and they really confirm that everyone has special abilities. And these pieces of art are just something to behold, and about a third of our collection spent six months in the Dane County regional airport being displayed so that the people who are coming and going from the airport could see the abilities of people with the diagnoses that we're concerned about. I just want to mention that we have, here at the Waisman Center, received two new grants for studies, two new grants from Autism Speaks for studies about autism. You're going to be hearing from Leann Smith about Transitioning Together which is one of the two grants, and that's a very exciting development. And then my colleagues and I received a three-year grant to focus on how can we understand the factors that can improve the quality of life of individuals with autism during adulthood. We're really thrilled about that. So one other point of future aspirations is something that we're calling the grandparents network at the Waisman Center which is to, we're exploring this and we're very eager to hear your ideas about it and gain your involvement. We're interesting in harnessing the power of grandparents, and there's a group in southern California that I just visited with who has done this, and it's quite amazing what the power of grandparents can do both as advocates on behalf of their children and grandchildren. They can send positive messages to the community to change the world that their grandchild is going to grow up in. There are many grandparents who have said that they don't have contact with other grandparents who have children with specific types of developmental disabilities, and we would like to think about a grandparent to grandparent set of options. We have one grandparent who is going to be on the panel this afternoon, so I think we can have many points of connections about this. That's just a new plan that we have here at the Waisman Center. So, I first of all want to thank

you for attending Autism

A Day With the Experts. And it's just very, very wonderful to have all of you here who are in this room as well as the individuals who are at our remote site and the hundreds of people who have logged in to watch this entire day from their own computers at home. So thank you for being here, and what I'd like to do before we move on with our program is tell you who our speakers are, introduce you to them now, and then each one can be coming up and giving their presentation. So our first presentation will be given by Dr. Andy Alexander who is a professor in the Departments of Medical Physics and Psychiatry here at the UW and does his research here at the Waisman Center.