October 22, 2023 • 43 mins
The Toffler’s were perhaps best-known for their innovative books, “Future Shock” and “The Third Wave.” Alvin and Heidi Toffler had a daughter, Karen, who died in 2000 at the age of 46 after more than a decade of suffering from Guillain-Barré Syndrome. After her death, the Toffler’s established the Karen Toffler Charitable Trust, to help fund neurological medical research breakthroughs. Newt’s guests are: Deborah Westphal, Executive Advisor of the Karen Toffler Charitable Trust, and two of the Trust’s Toffler Scholars and grant recipients; Adithya Gopinath, Postdoctoral Neuroscience, University of Florida and Vijaya Kolachalama, Associate Professor, Boston University. Learn more at https://tofflertrust.org
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Episode Transcript
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Speaker 1 (00:05):
On this episode of news World. I first met Alvin
and Heidi Toffler in the nineteen seventies and worked with
them on a project about anticipatory democracy. Tafler's book Future
Shock had really changed how people thought about things. Providentially,
the publisher decided to bring it out in three different colors,
(00:27):
so that when you walked into a store, you had
your own version of Future Shock right there. The Taflers
went on to write What I Think is in some
ways their most important book, The Third Wave, published in
nineteen eighty four. It had an enormous impact and was
built on some earlier work done by various academics on
the whole concept of the scale of the information revolution,
(00:50):
but the Tafflers had a remarkable capacity for popularizing things
and bringing them home. Alvin and Heidi had a daughter
named Karen, who tragically died in two thousand of theester
forty six after more than a decade of suffering from
gian Barr syndrome. After her death, Alvin and Heidi established
the Karen Tofler Charitable Trust to help fund neurological medical
(01:14):
research breakthroughs. Here to talk about the work which the
Karen Tafler Charitable Trust has developed which they are funding today.
I'm really pleased to welcome my three guests, Deborah westfal
the Executive Advisor to the Karen Toaffler Charitable Trust, and
two of the Trusts Tofler Scholars and grand recipients, Adifia Gopinav,
(01:35):
postdoctoral Neuroscience, University of Florida, and Vijaya Colachlama, Associate professor
at Boston University, on how the Karen Toffler Charitable Trust
helps fund advanced neurological disease research and helps young professional
researchers early in their career doing this research, including Alzheimer's
(01:57):
in Parkinson's welcome, It's a pleasure to be here.
Speaker 2 (02:11):
Thank you, sir, pleasure.
Speaker 1 (02:12):
I'm really delighted to have all three of you. And
I took great pride in taking Tafler down to see
General Don Starry, who was the head of the Training
and Doctrine Command, who had read Tafler's work and said,
if this is accurate, it forces us to change all
of our thinking and literally had reshaped the Army's battle
doctrine and led them to develop what they called air
(02:35):
land battle because they wanted the air Force totally integrated
with the army based on the whole concept of a
third wave of information, and as a result, much of
what we see today as an integrated team across all
the services grew out of the work of Alvin and
Heidi Tofler, which is kind of an amazing achievement. I
(02:56):
also had the great privilege of taking them to see
Vice President George shtab Bush and talk about the implications
that their work had for thinking about government and society.
The Taflers were remarkable people, and I don't think there's
any way to explain to beond that they were one
hundred percent human. They totally loved life. They were engaged
(03:17):
in the life of the mind, but they were also
just engaged in being good friends. I stayed with them
in New York, and I stayed with them in Los
Angeles after they moved out there. Every time I'd see them,
they were remarkably helpful, and as we were developing a
new set of ideas which led to the contract with America,
they would come and visit us in the Capitol and
we'd sit around a brainstorm. Some of our members thought
(03:39):
we were nuts because we kept talking about all this
future stuff, but others being to figure out, hey, this
is real candidly today the house could use a little
more Tofleriism on a little less stupidity and how it's
doing things. Let's start Debora if we could with you,
can you talk about the Karen Tofler Charitable Trust, what
it is today, how it got started, and how you
(04:02):
see its evolution and its impact.
Speaker 3 (04:04):
Sure so you did a wonderful job describing the Tofflers.
They were amazing people, visionary thinkers, renowned authors and futurists,
and they really dedicated their life to understanding and shaping
the future across this very rapidly changing world. Through their
books and their speeches, they connected with people human to
(04:27):
human to share ideas, to learn, and to champion future
focus consciousness. To honor their legacy, they continue their mission
through the Karen Toffler Charitable Trust. All passed away in
twenty and sixteen. Heidi passed away in twenty nineteen, and
the trust was established in twenty nineteen, named after their
(04:50):
daughter Karen, which you knew personally and you talked about
per disease. The trust is a nonprofit organization and it's
working to revolutionize metal research, education and technology, and we're
really focus on these young professionals conducting early stage research
that explores new ventures and creating new medical knowledge. And
(05:14):
that's really important because it's these young researchers who are
just starting their careers. They're starting to build their labs,
they're maturing the area of focus, and sometimes their research
is pushing the limits of and outside boundaries, and so
that support to them is very, very important.
Speaker 1 (05:36):
I should mention just for a second, because I think
people don't often realize how powerful an idea can be.
That Future Shock, for example, when it came out, actually
sold as many books in Japan as it's sold in
the United States. Now, considering that we are more than
twice the size of Japan, gives you some sense of
(05:56):
how much they penetrated Japanese culture. And when their book
came out, which really described the information revolution the third Wave,
the Chinese Communist Party actually made a decision at the
highest levels that they would popularize their book throughout all
of China. I remember one time Alvin telling me what
(06:18):
it was like to be standing in Shanghai and have
people walk up holding a Chinese copy of his book
and asking him to sign it. Gorbachev was aware of
the concepts that they had. And so these are two
people who had had a remarkable set of insights that
applied to the entire human race, and who had come
(06:39):
to understand from their daughter's long, painful disease that really
one of the most complicated areas of medical development is
this whole question of neurological activity, whether it is the
kind of disease that Karen had, or whether it's Alzheimer's
or Parkinson's or a whole range of other things. And
(06:59):
I think that's The Tofler Scholars Program is a perfect
example of what the Toafflers would have favored in having
a deep belief in the better future and in the potential.
So why don't you talk a little bit before we
get to them about the fact you have over sixty
Toughler scholars from ten universities, and we had specifically picked
(07:22):
and asked bj and Adithia to be with us today
because of the unique and remarkable work they're doing. But
why don't you briefly describe for us, if you would, Debra,
the whole concept of the Tofler Scholars Program and the
universities it works with.
Speaker 3 (07:37):
Yeah, so when the trust was created, we looked around
to see where other funding was in support was being done,
and you know, there's a lot of work and great
work that's being done by existing foundations, by government agencies
in this area of trying to understand the brain and
the brain body connection. But what seems to be somewhat
(08:02):
limited or a gap in that support is for the
ideas that are somewhat outside the current day thinking. And
as you just mentioned, you know, it's a very Tofler
esque thing to kind of challenge today's notions, challenge today's
hypotheses and understanding and kind of step back and question
(08:25):
what are we doing or how are we doing it?
Or what do we know or what don't we know.
The scholars are those individuals. They're courageous, they have ideas,
they have hypotheses for what research we might be able
to take on that today doesn't have a lot of support,
(08:46):
but tomorrow it could lead to the big breakthroughs. And
so the Karen Toffler Charitable Trust was created to give
that support. You know, it's the seed money for their
early pipeline research that is needed so that researchers can
get started with this research, get a few breakthroughs, publish,
(09:07):
get their research out there, and then let other organizations
such as the NIH or the larger foundations see that
they can make progress and then fund at larger amounts.
And so we feel like we're filling a real important
niche and the upfront part of the research pipeline so
that we can look for that new science, look for
(09:29):
that new knowledge that really might lead to the breakthrough
or the end to some of these horrible diseases.
Speaker 1 (09:38):
I had a particular interest in Alzheimer's because I had
taught the oldest men's Bible study back when I was
a very young professor. I watched several of the members
of that Bible study themselves came down with Alzheimer's. My
sister in law's father came down with Alzheimer's, wife came
(09:58):
down with Parkinson's, and so it's really a very complicated situation.
I co chaired with Democratic Senator Bob Carey a three
year study on Alzheimer's research, which actually when we testified
at the Senate had the largest number of senators I'd
ever seen at a hearing because so many of them
(10:18):
have direct ties through their families with Alzheimer's and Alzheimer's
is the sixth leading cause of death in the United States.
There are over five million Americans living with it as
we age the current projections will be fourteen million by
twenty fifty. And of course Parkinson's is the second leading
(10:39):
a neurodegenerative disorder. So Adithya and Colechlamanla, you decide which
one wants to jump in first. Here? Can you explain
to us, even with all the attention has been paid
over the years, we still have a challenge of an
accurate diagnosis and an early enough diagnosis. Can you all
talk a little bit about this whole diagnostic channel.
Speaker 4 (11:00):
Yes, thank you for having us. Before I go there,
I just want to thank the Toughler Trust for believing
in us, believing in our science, and in fact I
received the award in twenty twenty one, and already I
think with that support we've been able to make a
lot of progress in terms of building novel tools that
(11:22):
would allow researchers to sort of come up with better
ways to diagnose Alzheimer's. In terms of just the background,
I think the way we want to think about Alzheimer's
is broadly in the category of dementia so dementia is
the term that you would want to use to describe
memory loss. And there are many ways dementia can be caused, right,
(11:43):
And Alzheimer's disease is sort of really the primary cause
of dementia. About seventy percent of the cases who have dementia,
that's because they have Alzheimer's. And the complexity is not
about diagnosing if somebody has dementia, because there are some
very standardized tests are out there that any practitioner can
administer to assess if somebody has dementia. The problem is
(12:07):
actually more related to understanding the root cause of dementia. Right,
So dementia can happen if somebody actually even has depression,
or somebody who had a head injury, or somebody who
had Parkinson's or even Alzheimer's, Right, So the challenge is
not about dementia, but the challenge is about understanding the
root cause of dementia. And unfortunately, the gold standard diagnosis
(12:31):
that is out there today is only when the person
is dead, so they actually open up the brains and
then they see what's actually inside and then then they
can confirm that they have Alzheimer's or some other issue.
Speaker 1 (12:43):
Can I just say, as a non researcher, it's a
little depressing to learn that we can only diagnose you
after you die. It strikes me that that limits the
amount of medical intervention to minimize the damage.
Speaker 2 (12:57):
Right.
Speaker 4 (12:58):
That actually has been the big challenge. But I think
over the past few years there have been several technologies
that are out there that are allowing us to come
up with the best possible ways to assess if somebody
has Alzheimer's disease. For example, there is research that is
going on in the world about how do you sort
of come up with a black test to assess certain
(13:20):
proteins that point to the risk of Alzheimer's that are
imaging modality such as pet scans and other ways to
sort of understand what kind of proteins are deposited in
the brain to diagnose Alzheimer's. So it's getting better, but
still there is a belief in the community that the
gold standard is still post model.
Speaker 1 (13:40):
But as a potential patient, the earlier we can intervene
and the earlier we have some sense of slowing down
the rate of the disease, the better the likelihood of
a successful intervention. So if I can only intervene after
you die. I've sort of lost all of my opportunities here.
What is the work like because you almost need a
(14:03):
relatively and expensive, widely usable test, even in your thirties
to begin to find early on set. Correct me if
I get this wrong.
Speaker 4 (14:12):
Well, the relatively cheap aspect I think is very attractive.
I think we are hopefully going to get there at
some point. And also detecting the disease early on, I
think is very very important, crucial, especially today because I'm
sure you have seen the news about two drugs that
were recently approved by the FDA. One of them is
(14:32):
named as licanimab and the other one named as aducanemab.
So finally we have some hope that there are drugs
that can potentially cure Alzheimer's right. So, because of the
fact that there are these drugs that are approved, there
is now a huge push in the community to really
think about how to detect the disease at the right
time so that these drugs can be given to those patients.
(14:53):
So a lot of technologies and a lot of research
has actually been done to sort of identify those patients
who might actually get benefit from these drugs. So clearly
things are getting better, and in fact, one of the
things that we are trying to do in our lab
is to come up with AI based approaches to take
routine collected data clinical data, because you know, when a
(15:14):
patient walks into the hospital, whether it's a neurologist or
even a general practitioner, they try to basically gather a
lot of information. So based on their examination, based on
the demographics of the patient, based on their medical history,
based on their family history, they sort of get all
that information then try to come up with the best
possible way to diagnose the disease and hopefully early in
(15:35):
the stage. And what we are doing in our lab
is to combine all this information using artificial intelligence and
then seeing if there is a way for us to
come up with a better way to diagnose the disease,
especially sort of understand whether the patient has let's say,
Alzheimer's and maybe some combination of Alzheimer's with other kinds
of things that are going on in the patient. So
(15:57):
if we do that well, then hopefully we can identify
those patients at the right time, and if we do that,
hopefully these drugs can be given to those patients at
the right time. I think that's the plan. And because
of the fact that we have these drugs that are
recently approved, there is a lot of push in the
community to sort of really come up with better ways
(16:17):
to diagnose the disease, because if we didn't have any drugs,
then it's all about just managing the patient, which is
completely different as opposed to actually giving the patient a
drug and then hoping there is going to be some
benefit that's coming out. Right, So this is a good time,
and I think things are only getting better.
Speaker 1 (16:45):
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(17:54):
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made amazing strides in turning cancer into something which people
can survive and which in many cases they go into
(18:16):
remission and in other cases it's manageable for decades. So
there's some help here that we're in the very beginning
stages of being able to deal with neurological conditions in
the same kind of science based pattern of gradually learning
more and more and having greater and greater tools. Now,
let me ask Aditya. You focus a lot on Parkinson's.
(18:39):
First of all, can you talk a little bit about
the difference between Alzheimer's and Parkinson's as they manifest themselves
both in physical characteristics but also in terms of what's
happening in your neurological system.
Speaker 2 (18:52):
Yes, absolutely, so, to start to echo what Vijaya said,
we'd like to thank the Trust for believing in us
this far, and of course I'd like to thank you
for inviting us here to talk with you today, as
Vijaya was also telling us, often Alzheimer's is considered a dementia,
so it can be diagnosed by a skilled clinician using
a battery of tests. Parkinson's typically does not present as dementia,
(19:13):
so a person would usually go to see their primary
care physician or a neurologist a specialist if they have one,
because they suddenly noticed that they're not able to perform
certain tasks. So when somebody's reaching for a mug of
coffee in the morning, they suddenly find that their hand
doesn't quite make it all the way to the mug,
or once they grasp the mug, their hands are shaking,
(19:34):
and that's usually one of the first signs they have
a tremor in one hand or the other. Now, when
a person has this kind of issue, they would see
their doctor might suggest that they go see a neurologist
as specialists, and in the hands of a skilled specialist
usually they can make a seventy to eighty percent accurate
diagnosis of Parkinson's based on the movement problems that they're having. Now.
(19:57):
On the other hand, by the time a person had
presented with these movement problems, sixty seventy percent of the
cells and the brain that signal movement. These are called
dopamine neurons they make a certain transmitter called dopamine, sixty
to seventy percent of these cells have already died. So
by the time a person has the movement symptoms that
(20:17):
they'd go to the doctor for, as far as we're aware,
at this point in time, they may be beyond the
point where we can bring it back to where they
were before. And that really brings us back to the
need to have diagnostic tests that could help us detect
and diagnose Parkinson's before we get to that point. The
other thing to keep in mind is that typically ten
(20:40):
to twenty years even before they have these movement symptoms,
a lot of these patients with Parkinson's report symptoms that
are outside of the brain. They have gastro intestinal problems,
they have constipation, they have mood changes, and so this
is telling us that there are things that are happening
way in advance of the presentation of the tremor. However,
we haven't yet become skilled enough to be able to
(21:01):
detect it at that stage.
Speaker 1 (21:03):
It sounds to me like Parkinson's is a wider part
of your neurological system, and that Alzheimer's tends to be
focused in the brain. I mean, is that a reasonably accurate,
simple minded way of putting it.
Speaker 2 (21:18):
I think that's fairly reasonable. The tria, do you think
that's an accurate way to put it?
Speaker 4 (21:23):
I don't call myself a Parkinson's disease expert, but I
think the point is trying to make is that there
are these physical observations that you can make on this
patient who has Parkinson's disease, in terms of, let's say,
the way they walk, the way they hold hands, the
way they speak. I think those are more apparent, and
I think it's fair to assume that you know, those
(21:43):
are things that are kind of outside the brain, that
are kind of manifested. Then in the case of Alzheimer's,
it's basically the memory symptoms that I think pretty apparent.
So I think that's a fair way to describe, and.
Speaker 1 (21:57):
In both cases, get the inaccurate early diagnostic system is
a key part of trying to figure out how to
get ahead of the disease, because if I understand the
two of you, there's a very high value to an
early intervention and being able to minimize the progression of
the disease.
Speaker 2 (22:16):
In both cases, that's absolutely right.
Speaker 1 (22:19):
There's a whole issue about dopamine signaling in the brain.
One of you has to walk me through the whole
concept of dopamine signaling and what the correlation is.
Speaker 2 (22:31):
Absolutely So, let's say a person is riding a bicycle.
There are certain neurons that are sending signals to different
parts of the brain that tell the person to make
this continuous movement. Now, on the other hand, when somebody
is reaching for a mug of coffee, that we call
that intentional movement. So the person reaches out and their
brain is sending a signal that their hand has to
go towards this target and make this one very specific motion.
(22:54):
That's a slightly different circuit. And so when a dopamine
neuron sends that signal to release dopamine, we're signaling for
one of two different kinds of movement, at least in
the context of Parkinson's disease. And it seems that in Parkinson's,
it's the neurons that are sending the signals to help
a person initiate in complete a movement like reaching for
(23:14):
amuga coffee or picking up their pen to make their signature.
These are the neurons that seem to be primarily affected.
And it turns out that when we started this study,
for the past fifty to one hundred years, people have
known that the neurons in the brain that are signaling
movement are the ones that are affected in Parkinson's. But
in the past ten to fifteen years, a number of
(23:36):
researchers have also found similar markers. Actually, the same markers
that are on these neurons in the brain are also
found on immune cells that are these are immune cells
white blood cells that are circulating in our blood. And
so when we started about the study about seven years ago,
we asked a very simple question. We said, when somebody
has Parkinson's, we know that these markers are changing in
(23:58):
the brain because these neurons are dying. So then we said, okay,
so is there a change in the immune system. Are
these markers also changing in the immune system And that
answer ended up being a resounding yes. So what this
really opens the door to is this is something that
you alluded to and that Vejia also alluded to earlier.
If there were a test that could be cheaply and
(24:19):
widely administered, say a blood test that could help detect
Parkinson's disease early. This could be something that could be
administered by a patient's primary care physician versus somebody who's
a specialist that a patient might have to travel to see.
And so this really opens the door to potentially bringing
us closer to the point where somebody could get a
diagnosis of Parkinson's much much earlier than we could currently do.
Speaker 1 (24:44):
You're currently working with a diagnosis based on a blood
test that seems to have like ninety six percent accuracy.
Speaker 2 (24:53):
That's right. So we seem to have at least the
same accuracy as a clinician as a neurologist who make
diagnosis in the clinic based on their movement, symptoms and
their response to a medication. So we seem to be
right on par with the diagnostic accuracy of a neurologist.
And it's sort of my dream in the long term
that this would be one of the tests that maybe
(25:15):
people would get included in their blood work once they
turned fifty as a routine monitoring system, and if something
concerning pops up in a blood test like that, the
physician could say, Hey, you know, mister Jones, maybe you
should go see a neurologist to have somebody you could
talk with. So it would really open the door to
potentially getting people treated and evaluated much earlier than we
could do right now.
Speaker 1 (25:35):
That's a very large jump from the way we used
to look at it.
Speaker 2 (25:39):
Right Absolutely, the way we used to look at it
was when the movement symptoms became debilitating and people didn't
really have another option other than to see a specialist
and seek help. That's typically when a person would go
into the clinic and see their specialists. This is definitely
a big jump, and currently the studies that we have
underway with the support of the Trust hopefully are going
(25:59):
to lead us to be able to diagnose Parkinson's or
detect Parkinson's even earlier than I'm currently dreaming of. So
in theory, if we could detect Parkinson's before a lot
of the dopamine neurons are lost. There's a chance that
we could intervene at that early stage and maybe prevent
the disease from ever getting to the point where we
currently see it at the clinic. And of course, what
(26:20):
I'm thinking decades into the future, hope by the time
my career comes to an end, we're definitely at that stage.
Speaker 1 (26:25):
It's conceivable if it's a blood based test and you're
getting a diagnostic off of looking for certain specific traces,
then you could literally begin to find people at a
very early stage. That would change dramatically our whole capacity.
I mean you could be talking twenty or thirty year
difference in being able to intervene. Is that a reasonable statement?
Speaker 2 (26:47):
Yes, absolutely, because all the evidence right now in people
and in studies in animals and cells and dishes suggests
that the changes that are happening in Parkinson's are starting
decades before we're able to detected in the clinics. So,
as you say, if we had a way to detect
this via a blood test ten twenty thirty years in advance,
that would be the time press to start intervening and
(27:10):
hopefully slow or even stop the progression of the disease.
Maybe we could prevent it from ever getting to the
point where we know that somebody has Parkinson's.
Speaker 1 (27:36):
Let me switch that in to a totally different approach
that Jaya is doing, and that's your focus on using
artificial intelligence to really create an opportunity to have a
much more sophisticated analytical framework. I want to go back
to the basics here. Explain to us the difference between
just artificial intelligence and just mass computational analysis.
Speaker 4 (27:59):
Yeah, I want to start by actually talking a little
bit more about the point that you mentioned, and I
want to add one more thing to it, which is
in this country and probably around the world, there is
actually a shortage of expertise. So we really have a
shortage of neurologists who have the right skill set to
(28:20):
make a diagnosis, whether it's Alzheimer's or Parkinson's. And this
is actually declining, and in fact, there were some recent
papers that actually mentioned about the fact that this is
going to worsen in the next decade or so. And
the reason is because not many people really want to
be neurologists. So if you go to a medical school,
most of them want to become an orthopedic surgeons or
(28:42):
international cardiologists. Because they make probably twice more money or
three times more money than a neurologist. Plus neurologist profession
is a very hard job because you have to sit
in front of the patient, work with the patient, and
then sort of take care of them. I think there
is that part which I really want to add, because
(29:03):
the reason we want to build these tools, the reason
we want to use AI to sort of come up
with these technologies is to sort of address that need,
that shortage of expertise, and one day we are hoping
that these tools can be assistem in terms of making
diagnosis and sort of increasing the efficiency of patient care. So,
in terms of AI broadly, the way I see it
(29:24):
is that a simple computation analysis is going to basically
look at the data that is out there in terms
of looking at the information that's on the data, But
I think AI has the ability to sort of learn
from the data, and once it learns from the data,
it would then have the capacity to sort of make
predictions on a new instance or a new case which
(29:47):
it has not seen before. So I think that's the
advantage of using AI, And imagine in the context of
this dementia due to Alzheimer's cases. What we did was
we basically took data from thousands and thousands of of
patients around the world. We fed all this information to
this AI model. And when I say data, I'm talking
about all kinds of things that a doctor collects in
(30:10):
a routin clinical setting, which is demographics, medications, MRIs, neuropsych tests,
and other bedside cognitive tests. So this kind of information
is fed into this AI model coming from all these
tens of thousands of patients, and this algorithm sort of
learns the pattern from all this data, and then now
it's in a position to sort of predict on a
(30:31):
new case. Look tomorrow, imagined, there is a new patient
walking in and the doctor is actually seeing this patient
and trying to collect information on this new patient. And
at that point, if you plug this AI model, this
AI model will be able to sort of learn from
all the things that it has seen before and sort
of in for what actually is happening on this specific
patient who's of interest. So that I think has this
(30:53):
ability for AI to learn from the data and make
a new inference, I think is the key.
Speaker 1 (31:00):
You talk about using artificial intelligence, what you're really suggesting
is that you will presently have an ability to sort
of autonomously evaluate each patient against a huge database of patients,
and that over time the analytical tool doing that will
continuously learn and evolve to become more accurate at an
(31:23):
earlier stage. And so in one way, you're both making
it easier to be a neurologist, and you are enabling
a neurologists to deal with vastly more cases than they
could if they were still back using Cree artificial intelligence capabilities.
Speaker 4 (31:41):
Absolutely, you are spot on. In fact, I think that's
kind of really the goal for us, because we want
to create tools that can be assistive to the neurologist.
If we don't want to replace the neurologists, we want
to assist them because they want to be as efficient
as possible because there is a huge lot of patients
we're waiting in line for their appointments, so we want
(32:02):
to make sure it'll be increase the efficiency in these
practices so that they can do things in a shorter
frame of time.
Speaker 1 (32:08):
Both of you are passionate. Both of you are deeply
immersed in what you're doing for young people who are
kind of thinking about what they want to do with
their lives. What would you tell them about your own experiences?
Is it fulfilling, is it fun? Is it exciting? How
would you describe how you got to be here in science?
Speaker 2 (32:29):
So that's actually a multifold answer, but I'm going to
try and make it short. I got to be in
science because people throughout my life teachers, primarily starting from
elementary school onwards, have been extraordinarily supportive and they recognized
my early interest in science and nurtured it. But what
really helped me turn it into a career was to
find a focus something that I was particularly passionate about.
(32:53):
And really it's the interactions with the patients that really
drives me forward because I'm seeing these individuals who are
suffering with this disease that, to be honest, they are
seeing as a progressive decline throughout their lives. And when
I see these patients on a day to day basis
here at the FIXEL Institute, I can't help but want
desperately to find a way for them to move forward.
(33:17):
Whether or not it's going to help me personally with
my own health is completely irrelevant, because there's this whole
world of people out there who are looking for answers
who are looking for help. So when it comes down
to a fifteen eighteen hour day for me of research,
I really don't bout an eyelid at doing it because I,
number one, recognize the need. Number Two, I'm completely passionate
(33:38):
about the topic and the area that I'm working in,
that is Parkinson's disease and dopemine signaling both in the
brain and outside of the brain, and the immune system.
And then finally there's this obvious unmet need and as
a human being, as an empathetic human being, it's really
impossible to ignore that.
Speaker 1 (33:55):
I realized when I was looking at your biography, you
actually get into this in part by self diagnosis.
Speaker 2 (34:01):
So it turned out throughout my childhood and early adulthood
it turned out that I had autoimmune disease and that
went undiagnosed, actually misdiagnosed as a number of different things
over the course of my life until I took a
step back, took my own notes, kept detailed records, and
recognized the patterns that led me to find a specialist
(34:22):
that could help me obtain a correct diagnosis and treatment.
And I certainly wouldn't want anybody else to go through
that if I could help.
Speaker 1 (34:29):
It, so it really becomes a personal journey very much so.
But Joya, how did you get involved in all this?
Speaker 4 (34:37):
I was born in India and the life in India
was different when I was growing up. I was very
fortunate to have a close knit family in my parents
as well as my grandmother inspired me to do science.
I think what I really want to do is to
have fun. In fact, I'm an associate professor here to
(34:58):
be you, and I keep telling my students and my
colleagues that this is one of the best jobs. And
the reason is because in my lab I have students
who are very passionate. They come from multiple disciplines like,
for instance, I have PhD students in computer science, MD
students who are going to be future doctors, post doctoral scholars,
(35:19):
and engineers. So all these people are literally working in
my lab and it's a joy, fun and enjoy to
work with them on a daily basis. Obviously, there are
many different problems in the world and I think, you know,
it's not fair for me to say that this is
the only thing that is more important. But overall, I
think I felt that the unmet need is a lot
(35:42):
higher in the neurological disorder realm because there are very
few therapies and brain is very very complex as opposed
to ingo, for example, cancer, you know, somebody has cancer,
there is a test, and there is a therapy. Potentially.
Of course, not every cancer is cured, but in the
context of the brain, there is a lot more that
we can learn and sort of resolve. So I think
(36:04):
that kind of really helps us to sort of really
think about it. But personally, I think this career is
so much fun, and I know we are literally doing
work at the cutting edge, and students in my lab
really come up with new ideas every day, so it's very,
very exciting to do this.
Speaker 1 (36:21):
Clearly both of you are passionate. I'm gonna start sketch
you of you for a second to what extent how
important has the Karen Toffler Charitable Trust been in your research.
Speaker 4 (36:31):
I keep shouting about this to everybody I know. This
has been an honor for me. I'm one of the
earlier Topler scholars, and when I met them and her colleagues,
it's so amazing to actually see them participate in our research, right,
that's kind of really unique.
Speaker 1 (36:46):
You know.
Speaker 4 (36:47):
I have gotten funding from a few other agencies but
I only submit my annual progress reports to them, whereas
in the context of the Topler Trust, it's very personal
because they are really invested not just in terms of
pushing the science, but also really helping us really think
about the next steps. Right, So DEV has connected me
to several other organizations and people several other organizations because
(37:11):
what we want to do is we want to build
tools that can hopefully be translated to the clinic one day,
which means we are not just thinking about science and papers.
We really want to build tech and then create companies.
We want to make sure company is a way to
sort of build a tech and then at the end
of the day that would reach the patient one day.
So DEV is actually also helping me to really think
about those elements as well. So Tofler Trust has helped
(37:33):
us above and beyond just doing science. It has actually
helped us to connect with more people, ask us the
right questions, and also think about the next step, which
is translation. Because one thing I learned from my format
advisor is that there is probably no drug or a
device in the market today that has not gone through
a company, because at the end of the day, company
is the thing that is taking science and then taking
(37:56):
it to the patients, and I think that's the journey
that I really want to take, and I have to
thank the Trust for that.
Speaker 1 (38:01):
Hear how big a factor has the Trust been for you?
Speaker 2 (38:04):
I would echo many of Jia's statements there. So the
Trust support has been I would say, irreplaceable. And this
is really why. So the research that we're conducting sits
at the intersection between two fields of science, neuroscience and immunology.
And historically, at least if you go back twenty or
more years, these two fields considered themselves completely separate and unrelated.
(38:27):
But it turns out the head is connected to the
rest of the body, and so the immune system and
the brain do in fact communicate, and specifically when we
get into the neuroscience and the biology of dopamine signaling
in the immune system. This has been a very difficult
gap to bridge because we're talking about two different fields
that really don't talk to one another. So support via
(38:48):
the traditional funding agencies, the NIH the other large foundations
has been difficult to come by, I would say, because
it really depends on the audience who happens to read
or review our research submissions, and if you have one
side of the camp versus the other side of the
camp reading it, it becomes very very hard to bridge
that gap, and the trust support has allowed us to
(39:12):
move forward such that we have data, we have information
that both sides of the aisle can understand, so to speak.
And so without the trust support, I don't think we
would have a chance.
Speaker 1 (39:23):
Well, Denbra, given the remarkable role that the Karen Toffler
Charitable Trust and the Toughler Scholars are playing. As our
listeners hear this, what can they do to be involved
and to help you with the Karen Toffler Charitable.
Speaker 3 (39:39):
Trust, engage with us, let us know that they're out
there and they want to engage with us. I think
there's lots of ways to support. We would like to
do more, and so of course financial support is very welcome.
And you know, as you mentioned earlier, all of us
know somebody or are personally touched by these diseases and
(40:02):
it's close to us. I lost my grandfather to dementia
and I lost my grandmother to ALUs so these things
are very very important to all of us. So for
those listeners out there, you know, follow up with us
on the website, follow up with me personally or with
the DDA or VJ and engage and then we can
see where we go from there. We give grants, but
(40:25):
as mentioned, we also love these people and we're building
these relationships for the long term for their professional careers.
We want them to be successful thirty forty years from
now and be able to say, hey, we were there
at the beginning. It's a very Alvin and Heidi Toffler
idea is let's change the world together and take this
(40:48):
journey together. We do things like we bring all of
our scholars together to have cross collaborative discussions about what
are you learning and what do you need? And we've
encourage them to even submit joint proposals back to us
for grants that are looking at As Adithia said, you know,
(41:08):
trying to bring these communities together that may never talk
to each other, because the breakthroughs are going to be
in those areas that are between the seams where lights
aren't being shown right now, and so we're trying to
shine those flashlights on those areas through networking and collaboration
(41:29):
and then funding. And we're very hopeful and we're very proud,
and I know Alvin and Heidi would be so proud
of each one of our scholars. They would just be
amazed at what they're doing and who they are as people.
So you can follow up on our website. The information
is there the Toffler Trust dot org, and we would
(41:51):
love to talk to somebody or anybody that wants to
engage well.
Speaker 1 (41:55):
Debrah Alifia and I want to thank you for joining
me and for ae educating me. The work you're doing
is fascinating and I think people will find this to
be an amazing conversation. We will let everyone know that
they can learn more about the Karen Toafler Charitable Trust
in advancing Medical Research at TAFLA Trust dot Oregon. I
(42:16):
want to thank all three of you for taking time
today to help educate folks.
Speaker 4 (42:20):
Thank you so much.
Speaker 1 (42:25):
Thank you to my guest Deborah westfall, Aditya Gopinath and
Vijaya Koleachlama. You can learn more about the Karen Tafler
Charitable Trust on our show page at newtsworld dot com.
Newts World is produced by Gingrid three sixty and iHeartMedia.
Our executive producer is Guarnsey Slow. Our researcher is Rachel Peterson.
(42:48):
The artwork for The show was created by Steve Penley.
Special thanks to the team at Gingrich three sixty. If
you've been enjoying Newtsworld, I hope you'll go to Apple
Podcast and both rate us with five stars and give
us a review so others can learn what it's all about.
Right now, listeners of neuts World can sign up for
my three freeweekly columns at Ginglish three sixty dot com
(43:11):
slash newsletter. I'm Newt Gingrich. This is Neutsworld.
On this episode of news World. I first met Alvin
and Heidi Toffler in the nineteen seventies and worked with
them on a project about anticipatory democracy. Tafler's book Future
Shock had really changed how people thought about things. Providentially,
the publisher decided to bring it out in three different colors,
(00:27):
so that when you walked into a store, you had
your own version of Future Shock right there. The Taflers
went on to write What I Think is in some
ways their most important book, The Third Wave, published in
nineteen eighty four. It had an enormous impact and was
built on some earlier work done by various academics on
the whole concept of the scale of the information revolution,
(00:50):
but the Tafflers had a remarkable capacity for popularizing things
and bringing them home. Alvin and Heidi had a daughter
named Karen, who tragically died in two thousand of theester
forty six after more than a decade of suffering from
gian Barr syndrome. After her death, Alvin and Heidi established
the Karen Tofler Charitable Trust to help fund neurological medical
(01:14):
research breakthroughs. Here to talk about the work which the
Karen Tafler Charitable Trust has developed which they are funding today.
I'm really pleased to welcome my three guests, Deborah westfal
the Executive Advisor to the Karen Toaffler Charitable Trust, and
two of the Trusts Tofler Scholars and grand recipients, Adifia Gopinav,
(01:35):
postdoctoral Neuroscience, University of Florida, and Vijaya Colachlama, Associate professor
at Boston University, on how the Karen Toffler Charitable Trust
helps fund advanced neurological disease research and helps young professional
researchers early in their career doing this research, including Alzheimer's
(01:57):
in Parkinson's welcome, It's a pleasure to be here.
Speaker 2 (02:11):
Thank you, sir, pleasure.
Speaker 1 (02:12):
I'm really delighted to have all three of you. And
I took great pride in taking Tafler down to see
General Don Starry, who was the head of the Training
and Doctrine Command, who had read Tafler's work and said,
if this is accurate, it forces us to change all
of our thinking and literally had reshaped the Army's battle
doctrine and led them to develop what they called air
(02:35):
land battle because they wanted the air Force totally integrated
with the army based on the whole concept of a
third wave of information, and as a result, much of
what we see today as an integrated team across all
the services grew out of the work of Alvin and
Heidi Tofler, which is kind of an amazing achievement. I
(02:56):
also had the great privilege of taking them to see
Vice President George shtab Bush and talk about the implications
that their work had for thinking about government and society.
The Taflers were remarkable people, and I don't think there's
any way to explain to beond that they were one
hundred percent human. They totally loved life. They were engaged
(03:17):
in the life of the mind, but they were also
just engaged in being good friends. I stayed with them
in New York, and I stayed with them in Los
Angeles after they moved out there. Every time I'd see them,
they were remarkably helpful, and as we were developing a
new set of ideas which led to the contract with America,
they would come and visit us in the Capitol and
we'd sit around a brainstorm. Some of our members thought
(03:39):
we were nuts because we kept talking about all this
future stuff, but others being to figure out, hey, this
is real candidly today the house could use a little
more Tofleriism on a little less stupidity and how it's
doing things. Let's start Debora if we could with you,
can you talk about the Karen Tofler Charitable Trust, what
it is today, how it got started, and how you
(04:02):
see its evolution and its impact.
Speaker 3 (04:04):
Sure so you did a wonderful job describing the Tofflers.
They were amazing people, visionary thinkers, renowned authors and futurists,
and they really dedicated their life to understanding and shaping
the future across this very rapidly changing world. Through their
books and their speeches, they connected with people human to
(04:27):
human to share ideas, to learn, and to champion future
focus consciousness. To honor their legacy, they continue their mission
through the Karen Toffler Charitable Trust. All passed away in
twenty and sixteen. Heidi passed away in twenty nineteen, and
the trust was established in twenty nineteen, named after their
(04:50):
daughter Karen, which you knew personally and you talked about
per disease. The trust is a nonprofit organization and it's
working to revolutionize metal research, education and technology, and we're
really focus on these young professionals conducting early stage research
that explores new ventures and creating new medical knowledge. And
(05:14):
that's really important because it's these young researchers who are
just starting their careers. They're starting to build their labs,
they're maturing the area of focus, and sometimes their research
is pushing the limits of and outside boundaries, and so
that support to them is very, very important.
Speaker 1 (05:36):
I should mention just for a second, because I think
people don't often realize how powerful an idea can be.
That Future Shock, for example, when it came out, actually
sold as many books in Japan as it's sold in
the United States. Now, considering that we are more than
twice the size of Japan, gives you some sense of
(05:56):
how much they penetrated Japanese culture. And when their book
came out, which really described the information revolution the third Wave,
the Chinese Communist Party actually made a decision at the
highest levels that they would popularize their book throughout all
of China. I remember one time Alvin telling me what
(06:18):
it was like to be standing in Shanghai and have
people walk up holding a Chinese copy of his book
and asking him to sign it. Gorbachev was aware of
the concepts that they had. And so these are two
people who had had a remarkable set of insights that
applied to the entire human race, and who had come
(06:39):
to understand from their daughter's long, painful disease that really
one of the most complicated areas of medical development is
this whole question of neurological activity, whether it is the
kind of disease that Karen had, or whether it's Alzheimer's
or Parkinson's or a whole range of other things. And
(06:59):
I think that's The Tofler Scholars Program is a perfect
example of what the Toafflers would have favored in having
a deep belief in the better future and in the potential.
So why don't you talk a little bit before we
get to them about the fact you have over sixty
Toughler scholars from ten universities, and we had specifically picked
(07:22):
and asked bj and Adithia to be with us today
because of the unique and remarkable work they're doing. But
why don't you briefly describe for us, if you would, Debra,
the whole concept of the Tofler Scholars Program and the
universities it works with.
Speaker 3 (07:37):
Yeah, so when the trust was created, we looked around
to see where other funding was in support was being done,
and you know, there's a lot of work and great
work that's being done by existing foundations, by government agencies
in this area of trying to understand the brain and
the brain body connection. But what seems to be somewhat
(08:02):
limited or a gap in that support is for the
ideas that are somewhat outside the current day thinking. And
as you just mentioned, you know, it's a very Tofler
esque thing to kind of challenge today's notions, challenge today's
hypotheses and understanding and kind of step back and question
(08:25):
what are we doing or how are we doing it?
Or what do we know or what don't we know.
The scholars are those individuals. They're courageous, they have ideas,
they have hypotheses for what research we might be able
to take on that today doesn't have a lot of support,
(08:46):
but tomorrow it could lead to the big breakthroughs. And
so the Karen Toffler Charitable Trust was created to give
that support. You know, it's the seed money for their
early pipeline research that is needed so that researchers can
get started with this research, get a few breakthroughs, publish,
(09:07):
get their research out there, and then let other organizations
such as the NIH or the larger foundations see that
they can make progress and then fund at larger amounts.
And so we feel like we're filling a real important
niche and the upfront part of the research pipeline so
that we can look for that new science, look for
(09:29):
that new knowledge that really might lead to the breakthrough
or the end to some of these horrible diseases.
Speaker 1 (09:38):
I had a particular interest in Alzheimer's because I had
taught the oldest men's Bible study back when I was
a very young professor. I watched several of the members
of that Bible study themselves came down with Alzheimer's. My
sister in law's father came down with Alzheimer's, wife came
(09:58):
down with Parkinson's, and so it's really a very complicated situation.
I co chaired with Democratic Senator Bob Carey a three
year study on Alzheimer's research, which actually when we testified
at the Senate had the largest number of senators I'd
ever seen at a hearing because so many of them
(10:18):
have direct ties through their families with Alzheimer's and Alzheimer's
is the sixth leading cause of death in the United States.
There are over five million Americans living with it as
we age the current projections will be fourteen million by
twenty fifty. And of course Parkinson's is the second leading
(10:39):
a neurodegenerative disorder. So Adithya and Colechlamanla, you decide which
one wants to jump in first. Here? Can you explain
to us, even with all the attention has been paid
over the years, we still have a challenge of an
accurate diagnosis and an early enough diagnosis. Can you all
talk a little bit about this whole diagnostic channel.
Speaker 4 (11:00):
Yes, thank you for having us. Before I go there,
I just want to thank the Toughler Trust for believing
in us, believing in our science, and in fact I
received the award in twenty twenty one, and already I
think with that support we've been able to make a
lot of progress in terms of building novel tools that
(11:22):
would allow researchers to sort of come up with better
ways to diagnose Alzheimer's. In terms of just the background,
I think the way we want to think about Alzheimer's
is broadly in the category of dementia so dementia is
the term that you would want to use to describe
memory loss. And there are many ways dementia can be caused, right,
(11:43):
And Alzheimer's disease is sort of really the primary cause
of dementia. About seventy percent of the cases who have dementia,
that's because they have Alzheimer's. And the complexity is not
about diagnosing if somebody has dementia, because there are some
very standardized tests are out there that any practitioner can
administer to assess if somebody has dementia. The problem is
(12:07):
actually more related to understanding the root cause of dementia. Right,
So dementia can happen if somebody actually even has depression,
or somebody who had a head injury, or somebody who
had Parkinson's or even Alzheimer's, Right, So the challenge is
not about dementia, but the challenge is about understanding the
root cause of dementia. And unfortunately, the gold standard diagnosis
(12:31):
that is out there today is only when the person
is dead, so they actually open up the brains and
then they see what's actually inside and then then they
can confirm that they have Alzheimer's or some other issue.
Speaker 1 (12:43):
Can I just say, as a non researcher, it's a
little depressing to learn that we can only diagnose you
after you die. It strikes me that that limits the
amount of medical intervention to minimize the damage.
Speaker 2 (12:57):
Right.
Speaker 4 (12:58):
That actually has been the big challenge. But I think
over the past few years there have been several technologies
that are out there that are allowing us to come
up with the best possible ways to assess if somebody
has Alzheimer's disease. For example, there is research that is
going on in the world about how do you sort
of come up with a black test to assess certain
(13:20):
proteins that point to the risk of Alzheimer's that are
imaging modality such as pet scans and other ways to
sort of understand what kind of proteins are deposited in
the brain to diagnose Alzheimer's. So it's getting better, but
still there is a belief in the community that the
gold standard is still post model.
Speaker 1 (13:40):
But as a potential patient, the earlier we can intervene
and the earlier we have some sense of slowing down
the rate of the disease, the better the likelihood of
a successful intervention. So if I can only intervene after
you die. I've sort of lost all of my opportunities here.
What is the work like because you almost need a
(14:03):
relatively and expensive, widely usable test, even in your thirties
to begin to find early on set. Correct me if
I get this wrong.
Speaker 4 (14:12):
Well, the relatively cheap aspect I think is very attractive.
I think we are hopefully going to get there at
some point. And also detecting the disease early on, I
think is very very important, crucial, especially today because I'm
sure you have seen the news about two drugs that
were recently approved by the FDA. One of them is
(14:32):
named as licanimab and the other one named as aducanemab.
So finally we have some hope that there are drugs
that can potentially cure Alzheimer's right. So, because of the
fact that there are these drugs that are approved, there
is now a huge push in the community to really
think about how to detect the disease at the right
time so that these drugs can be given to those patients.
(14:53):
So a lot of technologies and a lot of research
has actually been done to sort of identify those patients
who might actually get benefit from these drugs. So clearly
things are getting better, and in fact, one of the
things that we are trying to do in our lab
is to come up with AI based approaches to take
routine collected data clinical data, because you know, when a
(15:14):
patient walks into the hospital, whether it's a neurologist or
even a general practitioner, they try to basically gather a
lot of information. So based on their examination, based on
the demographics of the patient, based on their medical history,
based on their family history, they sort of get all
that information then try to come up with the best
possible way to diagnose the disease and hopefully early in
(15:35):
the stage. And what we are doing in our lab
is to combine all this information using artificial intelligence and
then seeing if there is a way for us to
come up with a better way to diagnose the disease,
especially sort of understand whether the patient has let's say,
Alzheimer's and maybe some combination of Alzheimer's with other kinds
of things that are going on in the patient. So
(15:57):
if we do that well, then hopefully we can identify
those patients at the right time, and if we do that,
hopefully these drugs can be given to those patients at
the right time. I think that's the plan. And because
of the fact that we have these drugs that are
recently approved, there is a lot of push in the
community to sort of really come up with better ways
(16:17):
to diagnose the disease, because if we didn't have any drugs,
then it's all about just managing the patient, which is
completely different as opposed to actually giving the patient a
drug and then hoping there is going to be some
benefit that's coming out. Right, So this is a good time,
and I think things are only getting better.
Speaker 1 (16:45):
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(17:54):
me of the period around nineteen seventy when Richard Nixon
proposed a war on cana. At that stage, we had
very few tools that were truly successful. But over the
depth and the range of the research, we just have
made amazing strides in turning cancer into something which people
can survive and which in many cases they go into
(18:16):
remission and in other cases it's manageable for decades. So
there's some help here that we're in the very beginning
stages of being able to deal with neurological conditions in
the same kind of science based pattern of gradually learning
more and more and having greater and greater tools. Now,
let me ask Aditya. You focus a lot on Parkinson's.
(18:39):
First of all, can you talk a little bit about
the difference between Alzheimer's and Parkinson's as they manifest themselves
both in physical characteristics but also in terms of what's
happening in your neurological system.
Speaker 2 (18:52):
Yes, absolutely, so, to start to echo what Vijaya said,
we'd like to thank the Trust for believing in us
this far, and of course I'd like to thank you
for inviting us here to talk with you today, as
Vijaya was also telling us, often Alzheimer's is considered a dementia,
so it can be diagnosed by a skilled clinician using
a battery of tests. Parkinson's typically does not present as dementia,
(19:13):
so a person would usually go to see their primary
care physician or a neurologist a specialist if they have one,
because they suddenly noticed that they're not able to perform
certain tasks. So when somebody's reaching for a mug of
coffee in the morning, they suddenly find that their hand
doesn't quite make it all the way to the mug,
or once they grasp the mug, their hands are shaking,
(19:34):
and that's usually one of the first signs they have
a tremor in one hand or the other. Now, when
a person has this kind of issue, they would see
their doctor might suggest that they go see a neurologist
as specialists, and in the hands of a skilled specialist
usually they can make a seventy to eighty percent accurate
diagnosis of Parkinson's based on the movement problems that they're having. Now.
(19:57):
On the other hand, by the time a person had
presented with these movement problems, sixty seventy percent of the
cells and the brain that signal movement. These are called
dopamine neurons they make a certain transmitter called dopamine, sixty
to seventy percent of these cells have already died. So
by the time a person has the movement symptoms that
(20:17):
they'd go to the doctor for, as far as we're aware,
at this point in time, they may be beyond the
point where we can bring it back to where they
were before. And that really brings us back to the
need to have diagnostic tests that could help us detect
and diagnose Parkinson's before we get to that point. The
other thing to keep in mind is that typically ten
(20:40):
to twenty years even before they have these movement symptoms,
a lot of these patients with Parkinson's report symptoms that
are outside of the brain. They have gastro intestinal problems,
they have constipation, they have mood changes, and so this
is telling us that there are things that are happening
way in advance of the presentation of the tremor. However,
we haven't yet become skilled enough to be able to
(21:01):
detect it at that stage.
Speaker 1 (21:03):
It sounds to me like Parkinson's is a wider part
of your neurological system, and that Alzheimer's tends to be
focused in the brain. I mean, is that a reasonably accurate,
simple minded way of putting it.
Speaker 2 (21:18):
I think that's fairly reasonable. The tria, do you think
that's an accurate way to put it?
Speaker 4 (21:23):
I don't call myself a Parkinson's disease expert, but I
think the point is trying to make is that there
are these physical observations that you can make on this
patient who has Parkinson's disease, in terms of, let's say,
the way they walk, the way they hold hands, the
way they speak. I think those are more apparent, and
I think it's fair to assume that you know, those
(21:43):
are things that are kind of outside the brain, that
are kind of manifested. Then in the case of Alzheimer's,
it's basically the memory symptoms that I think pretty apparent.
So I think that's a fair way to describe, and.
Speaker 1 (21:57):
In both cases, get the inaccurate early diagnostic system is
a key part of trying to figure out how to
get ahead of the disease, because if I understand the
two of you, there's a very high value to an
early intervention and being able to minimize the progression of
the disease.
Speaker 2 (22:16):
In both cases, that's absolutely right.
Speaker 1 (22:19):
There's a whole issue about dopamine signaling in the brain.
One of you has to walk me through the whole
concept of dopamine signaling and what the correlation is.
Speaker 2 (22:31):
Absolutely So, let's say a person is riding a bicycle.
There are certain neurons that are sending signals to different
parts of the brain that tell the person to make
this continuous movement. Now, on the other hand, when somebody
is reaching for a mug of coffee, that we call
that intentional movement. So the person reaches out and their
brain is sending a signal that their hand has to
go towards this target and make this one very specific motion.
(22:54):
That's a slightly different circuit. And so when a dopamine
neuron sends that signal to release dopamine, we're signaling for
one of two different kinds of movement, at least in
the context of Parkinson's disease. And it seems that in Parkinson's,
it's the neurons that are sending the signals to help
a person initiate in complete a movement like reaching for
(23:14):
amuga coffee or picking up their pen to make their signature.
These are the neurons that seem to be primarily affected.
And it turns out that when we started this study,
for the past fifty to one hundred years, people have
known that the neurons in the brain that are signaling
movement are the ones that are affected in Parkinson's. But
in the past ten to fifteen years, a number of
(23:36):
researchers have also found similar markers. Actually, the same markers
that are on these neurons in the brain are also
found on immune cells that are these are immune cells
white blood cells that are circulating in our blood. And
so when we started about the study about seven years ago,
we asked a very simple question. We said, when somebody
has Parkinson's, we know that these markers are changing in
(23:58):
the brain because these neurons are dying. So then we said, okay,
so is there a change in the immune system. Are
these markers also changing in the immune system And that
answer ended up being a resounding yes. So what this
really opens the door to is this is something that
you alluded to and that Vejia also alluded to earlier.
If there were a test that could be cheaply and
(24:19):
widely administered, say a blood test that could help detect
Parkinson's disease early. This could be something that could be
administered by a patient's primary care physician versus somebody who's
a specialist that a patient might have to travel to see.
And so this really opens the door to potentially bringing
us closer to the point where somebody could get a
diagnosis of Parkinson's much much earlier than we could currently do.
Speaker 1 (24:44):
You're currently working with a diagnosis based on a blood
test that seems to have like ninety six percent accuracy.
Speaker 2 (24:53):
That's right. So we seem to have at least the
same accuracy as a clinician as a neurologist who make
diagnosis in the clinic based on their movement, symptoms and
their response to a medication. So we seem to be
right on par with the diagnostic accuracy of a neurologist.
And it's sort of my dream in the long term
that this would be one of the tests that maybe
(25:15):
people would get included in their blood work once they
turned fifty as a routine monitoring system, and if something
concerning pops up in a blood test like that, the
physician could say, Hey, you know, mister Jones, maybe you
should go see a neurologist to have somebody you could
talk with. So it would really open the door to
potentially getting people treated and evaluated much earlier than we
could do right now.
Speaker 1 (25:35):
That's a very large jump from the way we used
to look at it.
Speaker 2 (25:39):
Right Absolutely, the way we used to look at it
was when the movement symptoms became debilitating and people didn't
really have another option other than to see a specialist
and seek help. That's typically when a person would go
into the clinic and see their specialists. This is definitely
a big jump, and currently the studies that we have
underway with the support of the Trust hopefully are going
(25:59):
to lead us to be able to diagnose Parkinson's or
detect Parkinson's even earlier than I'm currently dreaming of. So
in theory, if we could detect Parkinson's before a lot
of the dopamine neurons are lost. There's a chance that
we could intervene at that early stage and maybe prevent
the disease from ever getting to the point where we
currently see it at the clinic. And of course, what
(26:20):
I'm thinking decades into the future, hope by the time
my career comes to an end, we're definitely at that stage.
Speaker 1 (26:25):
It's conceivable if it's a blood based test and you're
getting a diagnostic off of looking for certain specific traces,
then you could literally begin to find people at a
very early stage. That would change dramatically our whole capacity.
I mean you could be talking twenty or thirty year
difference in being able to intervene. Is that a reasonable statement?
Speaker 2 (26:47):
Yes, absolutely, because all the evidence right now in people
and in studies in animals and cells and dishes suggests
that the changes that are happening in Parkinson's are starting
decades before we're able to detected in the clinics. So,
as you say, if we had a way to detect
this via a blood test ten twenty thirty years in advance,
that would be the time press to start intervening and
(27:10):
hopefully slow or even stop the progression of the disease.
Maybe we could prevent it from ever getting to the
point where we know that somebody has Parkinson's.
Speaker 1 (27:36):
Let me switch that in to a totally different approach
that Jaya is doing, and that's your focus on using
artificial intelligence to really create an opportunity to have a
much more sophisticated analytical framework. I want to go back
to the basics here. Explain to us the difference between
just artificial intelligence and just mass computational analysis.
Speaker 4 (27:59):
Yeah, I want to start by actually talking a little
bit more about the point that you mentioned, and I
want to add one more thing to it, which is
in this country and probably around the world, there is
actually a shortage of expertise. So we really have a
shortage of neurologists who have the right skill set to
(28:20):
make a diagnosis, whether it's Alzheimer's or Parkinson's. And this
is actually declining, and in fact, there were some recent
papers that actually mentioned about the fact that this is
going to worsen in the next decade or so. And
the reason is because not many people really want to
be neurologists. So if you go to a medical school,
most of them want to become an orthopedic surgeons or
(28:42):
international cardiologists. Because they make probably twice more money or
three times more money than a neurologist. Plus neurologist profession
is a very hard job because you have to sit
in front of the patient, work with the patient, and
then sort of take care of them. I think there
is that part which I really want to add, because
(29:03):
the reason we want to build these tools, the reason
we want to use AI to sort of come up
with these technologies is to sort of address that need,
that shortage of expertise, and one day we are hoping
that these tools can be assistem in terms of making
diagnosis and sort of increasing the efficiency of patient care. So,
in terms of AI broadly, the way I see it
(29:24):
is that a simple computation analysis is going to basically
look at the data that is out there in terms
of looking at the information that's on the data, But
I think AI has the ability to sort of learn
from the data, and once it learns from the data,
it would then have the capacity to sort of make
predictions on a new instance or a new case which
(29:47):
it has not seen before. So I think that's the
advantage of using AI, And imagine in the context of
this dementia due to Alzheimer's cases. What we did was
we basically took data from thousands and thousands of of
patients around the world. We fed all this information to
this AI model. And when I say data, I'm talking
about all kinds of things that a doctor collects in
(30:10):
a routin clinical setting, which is demographics, medications, MRIs, neuropsych tests,
and other bedside cognitive tests. So this kind of information
is fed into this AI model coming from all these
tens of thousands of patients, and this algorithm sort of
learns the pattern from all this data, and then now
it's in a position to sort of predict on a
(30:31):
new case. Look tomorrow, imagined, there is a new patient
walking in and the doctor is actually seeing this patient
and trying to collect information on this new patient. And
at that point, if you plug this AI model, this
AI model will be able to sort of learn from
all the things that it has seen before and sort
of in for what actually is happening on this specific
patient who's of interest. So that I think has this
(30:53):
ability for AI to learn from the data and make
a new inference, I think is the key.
Speaker 1 (31:00):
You talk about using artificial intelligence, what you're really suggesting
is that you will presently have an ability to sort
of autonomously evaluate each patient against a huge database of patients,
and that over time the analytical tool doing that will
continuously learn and evolve to become more accurate at an
(31:23):
earlier stage. And so in one way, you're both making
it easier to be a neurologist, and you are enabling
a neurologists to deal with vastly more cases than they
could if they were still back using Cree artificial intelligence capabilities.
Speaker 4 (31:41):
Absolutely, you are spot on. In fact, I think that's
kind of really the goal for us, because we want
to create tools that can be assistive to the neurologist.
If we don't want to replace the neurologists, we want
to assist them because they want to be as efficient
as possible because there is a huge lot of patients
we're waiting in line for their appointments, so we want
(32:02):
to make sure it'll be increase the efficiency in these
practices so that they can do things in a shorter
frame of time.
Speaker 1 (32:08):
Both of you are passionate. Both of you are deeply
immersed in what you're doing for young people who are
kind of thinking about what they want to do with
their lives. What would you tell them about your own experiences?
Is it fulfilling, is it fun? Is it exciting? How
would you describe how you got to be here in science?
Speaker 2 (32:29):
So that's actually a multifold answer, but I'm going to
try and make it short. I got to be in
science because people throughout my life teachers, primarily starting from
elementary school onwards, have been extraordinarily supportive and they recognized
my early interest in science and nurtured it. But what
really helped me turn it into a career was to
find a focus something that I was particularly passionate about.
(32:53):
And really it's the interactions with the patients that really
drives me forward because I'm seeing these individuals who are
suffering with this disease that, to be honest, they are
seeing as a progressive decline throughout their lives. And when
I see these patients on a day to day basis
here at the FIXEL Institute, I can't help but want
desperately to find a way for them to move forward.
(33:17):
Whether or not it's going to help me personally with
my own health is completely irrelevant, because there's this whole
world of people out there who are looking for answers
who are looking for help. So when it comes down
to a fifteen eighteen hour day for me of research,
I really don't bout an eyelid at doing it because I,
number one, recognize the need. Number Two, I'm completely passionate
(33:38):
about the topic and the area that I'm working in,
that is Parkinson's disease and dopemine signaling both in the
brain and outside of the brain, and the immune system.
And then finally there's this obvious unmet need and as
a human being, as an empathetic human being, it's really
impossible to ignore that.
Speaker 1 (33:55):
I realized when I was looking at your biography, you
actually get into this in part by self diagnosis.
Speaker 2 (34:01):
So it turned out throughout my childhood and early adulthood
it turned out that I had autoimmune disease and that
went undiagnosed, actually misdiagnosed as a number of different things
over the course of my life until I took a
step back, took my own notes, kept detailed records, and
recognized the patterns that led me to find a specialist
(34:22):
that could help me obtain a correct diagnosis and treatment.
And I certainly wouldn't want anybody else to go through
that if I could help.
Speaker 1 (34:29):
It, so it really becomes a personal journey very much so.
But Joya, how did you get involved in all this?
Speaker 4 (34:37):
I was born in India and the life in India
was different when I was growing up. I was very
fortunate to have a close knit family in my parents
as well as my grandmother inspired me to do science.
I think what I really want to do is to
have fun. In fact, I'm an associate professor here to
(34:58):
be you, and I keep telling my students and my
colleagues that this is one of the best jobs. And
the reason is because in my lab I have students
who are very passionate. They come from multiple disciplines like,
for instance, I have PhD students in computer science, MD
students who are going to be future doctors, post doctoral scholars,
(35:19):
and engineers. So all these people are literally working in
my lab and it's a joy, fun and enjoy to
work with them on a daily basis. Obviously, there are
many different problems in the world and I think, you know,
it's not fair for me to say that this is
the only thing that is more important. But overall, I
think I felt that the unmet need is a lot
(35:42):
higher in the neurological disorder realm because there are very
few therapies and brain is very very complex as opposed
to ingo, for example, cancer, you know, somebody has cancer,
there is a test, and there is a therapy. Potentially.
Of course, not every cancer is cured, but in the
context of the brain, there is a lot more that
we can learn and sort of resolve. So I think
(36:04):
that kind of really helps us to sort of really
think about it. But personally, I think this career is
so much fun, and I know we are literally doing
work at the cutting edge, and students in my lab
really come up with new ideas every day, so it's very,
very exciting to do this.
Speaker 1 (36:21):
Clearly both of you are passionate. I'm gonna start sketch
you of you for a second to what extent how
important has the Karen Toffler Charitable Trust been in your research.
Speaker 4 (36:31):
I keep shouting about this to everybody I know. This
has been an honor for me. I'm one of the
earlier Topler scholars, and when I met them and her colleagues,
it's so amazing to actually see them participate in our research, right,
that's kind of really unique.
Speaker 1 (36:46):
You know.
Speaker 4 (36:47):
I have gotten funding from a few other agencies but
I only submit my annual progress reports to them, whereas
in the context of the Topler Trust, it's very personal
because they are really invested not just in terms of
pushing the science, but also really helping us really think
about the next steps. Right, So DEV has connected me
to several other organizations and people several other organizations because
(37:11):
what we want to do is we want to build
tools that can hopefully be translated to the clinic one day,
which means we are not just thinking about science and papers.
We really want to build tech and then create companies.
We want to make sure company is a way to
sort of build a tech and then at the end
of the day that would reach the patient one day.
So DEV is actually also helping me to really think
about those elements as well. So Tofler Trust has helped
(37:33):
us above and beyond just doing science. It has actually
helped us to connect with more people, ask us the
right questions, and also think about the next step, which
is translation. Because one thing I learned from my format
advisor is that there is probably no drug or a
device in the market today that has not gone through
a company, because at the end of the day, company
is the thing that is taking science and then taking
(37:56):
it to the patients, and I think that's the journey
that I really want to take, and I have to
thank the Trust for that.
Speaker 1 (38:01):
Hear how big a factor has the Trust been for you?
Speaker 2 (38:04):
I would echo many of Jia's statements there. So the
Trust support has been I would say, irreplaceable. And this
is really why. So the research that we're conducting sits
at the intersection between two fields of science, neuroscience and immunology.
And historically, at least if you go back twenty or
more years, these two fields considered themselves completely separate and unrelated.
(38:27):
But it turns out the head is connected to the
rest of the body, and so the immune system and
the brain do in fact communicate, and specifically when we
get into the neuroscience and the biology of dopamine signaling
in the immune system. This has been a very difficult
gap to bridge because we're talking about two different fields
that really don't talk to one another. So support via
(38:48):
the traditional funding agencies, the NIH the other large foundations
has been difficult to come by, I would say, because
it really depends on the audience who happens to read
or review our research submissions, and if you have one
side of the camp versus the other side of the
camp reading it, it becomes very very hard to bridge
that gap, and the trust support has allowed us to
(39:12):
move forward such that we have data, we have information
that both sides of the aisle can understand, so to speak.
And so without the trust support, I don't think we
would have a chance.
Speaker 1 (39:23):
Well, Denbra, given the remarkable role that the Karen Toffler
Charitable Trust and the Toughler Scholars are playing. As our
listeners hear this, what can they do to be involved
and to help you with the Karen Toffler Charitable.
Speaker 3 (39:39):
Trust, engage with us, let us know that they're out
there and they want to engage with us. I think
there's lots of ways to support. We would like to
do more, and so of course financial support is very welcome.
And you know, as you mentioned earlier, all of us
know somebody or are personally touched by these diseases and
(40:02):
it's close to us. I lost my grandfather to dementia
and I lost my grandmother to ALUs so these things
are very very important to all of us. So for
those listeners out there, you know, follow up with us
on the website, follow up with me personally or with
the DDA or VJ and engage and then we can
see where we go from there. We give grants, but
(40:25):
as mentioned, we also love these people and we're building
these relationships for the long term for their professional careers.
We want them to be successful thirty forty years from
now and be able to say, hey, we were there
at the beginning. It's a very Alvin and Heidi Toffler
idea is let's change the world together and take this
(40:48):
journey together. We do things like we bring all of
our scholars together to have cross collaborative discussions about what
are you learning and what do you need? And we've
encourage them to even submit joint proposals back to us
for grants that are looking at As Adithia said, you know,
(41:08):
trying to bring these communities together that may never talk
to each other, because the breakthroughs are going to be
in those areas that are between the seams where lights
aren't being shown right now, and so we're trying to
shine those flashlights on those areas through networking and collaboration
(41:29):
and then funding. And we're very hopeful and we're very proud,
and I know Alvin and Heidi would be so proud
of each one of our scholars. They would just be
amazed at what they're doing and who they are as people.
So you can follow up on our website. The information
is there the Toffler Trust dot org, and we would
(41:51):
love to talk to somebody or anybody that wants to
engage well.
Speaker 1 (41:55):
Debrah Alifia and I want to thank you for joining
me and for ae educating me. The work you're doing
is fascinating and I think people will find this to
be an amazing conversation. We will let everyone know that
they can learn more about the Karen Toafler Charitable Trust
in advancing Medical Research at TAFLA Trust dot Oregon. I
(42:16):
want to thank all three of you for taking time
today to help educate folks.
Speaker 4 (42:20):
Thank you so much.
Speaker 1 (42:25):
Thank you to my guest Deborah westfall, Aditya Gopinath and
Vijaya Koleachlama. You can learn more about the Karen Tafler
Charitable Trust on our show page at newtsworld dot com.
Newts World is produced by Gingrid three sixty and iHeartMedia.
Our executive producer is Guarnsey Slow. Our researcher is Rachel Peterson.
(42:48):
The artwork for The show was created by Steve Penley.
Special thanks to the team at Gingrich three sixty. If
you've been enjoying Newtsworld, I hope you'll go to Apple
Podcast and both rate us with five stars and give
us a review so others can learn what it's all about.
Right now, listeners of neuts World can sign up for
my three freeweekly columns at Ginglish three sixty dot com
(43:11):
slash newsletter. I'm Newt Gingrich. This is Neutsworld.
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