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, annual Autism: 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.
[LAUGHTER] 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.
[LAUGHTER] 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. [LAUGHTER]
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 .