Verily presents Grand Rounds with Michael J. Fox & Todd Sherer, PhD | Talks at Google

[MUSIC PLAYING] JESSICA MEGA: Excellent. Thank you so much
for joining us today. Welcome to Grand
Rounds at Verily. And today is a very
important day for us. Today is a day to think about
our mission, which I know drives everything that we do. We know our mission is to
make the world’s health information useful
so that people can enjoy healthier lives. And I know that all of
us work incredibly hard, we keep our heads down. But if we keep our
eyes on this mission, then I think we’re
ultimately going to end up really
affecting people’s lives and make a difference that we
are trying to make every day. The question is, how do we
actually achieve our mission? And as I look around
the room and I see all of the different
teams that come together, this is a very special
place that’s got groups of people
figuring out, how do you collect the next
generation of information? This information may
be digital information and we were talking about
that earlier with Michael. It may be molecular information. And we have the latest
and greatest technologies that we can deploy. It then becomes very important
to organize this information. Information that
just lives in silos doesn’t actually change care. It doesn’t help people. And so the most
important thing is how do we activate
this information– get it into the hands of people,
patients, providers, and health systems? And if we do that, then we
will achieve our mission. Now the reason that we’re
starting Grand Rounds at Verily is it’s part of a big
effort to make sure that we understand our users. And it’s exciting
today that we’re going to be kicking off
this particular event. And I’ll hand it over to Bill
to give you some background. BILL MARKS: Thanks, Jess. Well, welcome to the inaugural
Grand Rounds at Verily. [CHEERS] As Jess said, the
intent of these sessions is really to connect us all
with the patients, researchers, and clinicians that are
a part of our lives. And I know that many
of you don’t always have the opportunity to hear
from the patient’s voice. So on a quarterly basis,
we’ll bring in patients so we can hear their
real-life stories, understand their unmet needs. And hopefully, that
will really help us stay connected to our mission. Each session, each quarter,
we’ll have a different topic. Today, the topic is Parkinson’s
Disease and 2017 marks the 200th anniversary of James
Parkinson’s first description of the disorder. I think it’s fair to say that
maybe in the next 20 years, we may make as much progress
in Parkinson’s as have been made in the first 200. And I think we can
contribute to that. Parkinson’s disease is a common
neurodegenerative disorder. It’s second only to Alzheimer’s
disease in prevalence. It affects about a million
Americans, 10 million people worldwide. Most people think of Parkinson’s
disease as a movement disorder– problems
with slowness of movement, stiffness
of muscles, shaking, difficulty with
gait and balance. But it’s really a
multi-system disorder that affects so
much more and causes many symptoms for patients. Difficulty regulating
blood pressure, difficulty with sleep,
depression, anxiety, gastrointestinal issues,
and many other issues. So it really is a
multi-system disease. And I think one that we’re up to
the challenge of tackling here at verily. Many of you are aware
of our emerging efforts in Parkinson’s, but
I wanted to highlight why Parkinson’s disease
makes sense for us to care about and work on. Certainly, there are
still knowledge gaps, as I think you’ll
hear from our guests, that we can really help fill– characterizing the
disease better, understanding how we measure
the progression of the disease or the response to treatments. And we can all
contribute to that. And as we study this disease,
it will simultaneously help us build out
our capabilities in systems biology, in
wearable sensors, in algorithm development, and so forth. So it’s really quite a
nice match for our mission. I think some of the specific
programs that we have– just so you’re aware– the new Study
Watch is being used in our Parkinson’s
study in the Netherlands and perhaps, in other
studies to come. We think this will be very
useful for tracking movement and function during
the patient’s normal daily activities. We also have
Liftware, of course. And Liftware can be
useful to cancel out tremor that may interfere
with feeding from Parkinsonian tremor. And now the Liftware
steady device can help dyskinesia, the
involuntary movements that medication can cause
in Parkinson’s disease. And then the
Parkinson [INAUDIBLE] that’s the Dutch version of
the Personalized Parkinson Project, which is our
longitudinal cohort study that we’re kicking
off in the Netherlands, with the goal of
really understanding in a deep way what Parkinson’s
is to advance treatments. So I think a very interesting
and important disorder that we care about. And we are extremely excited to
have members of the Michael J. Fox Foundation to help us better
understand Parkinson’s disease and learn what
it’s like, in terms of the impact on daily life. For those who are not familiar
with the Michael J. Fox Foundation for Parkinson’s
Research, in its short history, they say the only constant
of the organization has been its unflagging
commitment to finding a cure for Parkinson’s disease
and put itself out of business. Michael was saying earlier that
he wanted to go into business to go out of business. They launched the
foundation in 2000. It quickly grew from a
startup to the world’s largest nonprofit funder of
Parkinson’s drug development. They’ve allocated
more than $700 million since the inception
of the organization. “The New York Times” has
called the foundation the most credible voice
on Parkinson’s research in the world and it’s
widely being considered at the forefront of innovation. They’ve established a
peer-level group of neuroscience who prioritize, manage, and
troubleshoot their research portfolio. And they are sponsoring
a landmark biomarker study called PPMI. Most recently, the
Foundation has also formally integrated policy
and advocacy into their work, as well. So a very impressive
organization. I’ve had the privilege of
working with them pretty much since their inception. Well, let’s bring
out our guests. Actually, our first guest
is already in the audience. Debi Brooks is the
co-founder of the Foundation. Michael’s employee
number one, I think they call you, and presently,
the Executive Vice Chairman of the organization. Let’s have round of
applause for Debi. [APPLAUSE] And then we’re going to bring
to the stage Todd Sherer. Todd is the Chief Executive
Officer of the Foundation. Todd is formally trained
as a neuroscientist and he now directs the
organization’s research strategy, as well. He’s responsible, of course,
for the overall scientific and fundraising efforts. Todd, great to see you. I think we’re going to
have you sit over there. [APPLAUSE] Now, Todd and I go back a
ways, but the cool thing, that I didn’t realize
until I read your bio, is that you received a grant
from the Foundation in 2003. And so he was a grant
recipient and then came in-house to
gradually assume increasing
responsibilities and now, is the CEO of the organization. So great to have you here. TODD SHERER: Thanks, Bill. BILL MARKS: And then, our very
special guest, Michael J. Fox. [APPLAUSE] It does seem a little
superfluous for me to provide a formal
introduction, but I will provide
a very brief one. As you know, he is an
actor, producer, and author. And of course, an advocate. They say you burst onto the
scenes with iconic roles– Alex P. Keaton from
NBC’S “Family Ties,” Marty McFly in the “Back
to the Future” trilogy, and he’s continued
to thrill audiences as recently as “The Good Wife,”
with his portrayal of Louis Canning. But he’s also a
best-selling author and he’s written three books. Is that right? Three? MICHAEL J. FOX: Three. Two and a half. BILL MARKS: Three and a half. MICHAEL J. FOX: Two and a half. BILL MARKS: “Lucky Man, A
Memoir,” “Always Looking Up, The Adventures of an
Incurable Optimist,” and “A Funny Thing
Happened on the Way to the Future, Twists and
Turns and Lessons Learned.” I think you can tell a lot
just about the focus there. He was diagnosed with
Parkinson’s in 1991 at the age of 29, and
disclosed his condition to the public in 1998. Ultimately, went on to fund
the Foundation in 2000. So warm welcome, again,
for Todd and Michael. [APPLAUSE] Thanks to you both
for being here. It’s really kind of you to
come and help our employees understand Parkinson’s disease. You know– MICHAEL J. FOX: I’m
honored to be here. I just want to say– I’ve said to couple of people. But I always think when I’m
with a group like this, I think, your parents must
be so disappointed. [LAUGHTER] You’ve become nothing. You’ve become– BILL MARKS: Well, you know
what’s been interesting, Michael, is when word leaked out
that you might be visiting us, I had a number of
people come up to me and tell me that you were
their hero, their idol. And I had to sort of smile
because as a neurologist, taking care of Parkinson’s
patients for the last 20 years, they feel the same
way about you. That you’ve been
their hero and idol. And I just wonder, did
you ever think you’d be in that kind of a role? MICHAEL J. FOX: No. I didn’t think– I didn’t see it through. It’s kind of like when
I got into acting, it just was a thing that
felt good to me, so I did it. And it turned out. But when I found– when I was diagnosed
with Parkinson’s, I didn’t– my first thought
wasn’t other people. My first thought was, what
the hell happened to me? What am I going to do? And it took about seven years
for me to work that all out. And then what happened
was, once I accepted that– and I’ve said to people
that acceptance is– my happiness grows
in direct proportion to my acceptance and inverse
proportion to my expectation. If I could just accept
what my situation is, then I can nuance it and
I can be honest about it and I can move forward. And also, I became
part of a community. And then there were
other people that were in the same
situation I was and they had thoughts and feelings
that were similar to mine. And goals and hopes that
were similar to mine. And I just thought,
the only difference is I’m in this unique position. I’m in this position
where people know me and have a
predisposition towards me, whether it’s good or bad. Mostly good, which was nice. And so I said, I have
an opportunity here. And I kind of have a
responsibility here to do something. And so the foundation was born. But the gratitude that
you say that people express toward me
and those feelings, they’re completely mutual. I mean, I’m so
inspired by people that have this in they’re in
a tougher position than I am and they deal with it daily. And I feel honored that
they’ve entrusted me with their hopes and their
dreams of being rescued. BILL MARKS: Well, you’ve
already gotten pretty personal. And I wanted to go
back in time to– [LAUGHTER] –back to the first symptoms. What were you experiencing? MICHAEL J. FOX: Well, I was
doing a movie in Florida called “Doc Hollywood.” And I was– I woke up in the morning
and had a twitching pinky. And I– I was out that night
before with Woody Harrelson, who was in the movie. And that’s always bad news. [LAUGHTER] And so we kind of
ripped up Gainesville. We were in a college town. With Woody Harrelson in a
college town, it’s just so bad. But I woke up the next morning
and I had this twitching pinky and I couldn’t stop it. It just kept twitching. And so I went to a
neurologist on campus– BILL MARKS: Right away. MICHAEL J. FOX: Yeah. I went the next day. Did you see what I– because I thought
I hit my ulna or– and he said– the guy
said it was thoracic– my thoracic– that
it was some pull. And he completely
missed the boat. But there’s no symptoms with
early onset that really tell you– and a 29-year-old guy,
he’s not thinking Parkinson’s. So then, about a year later– it was about a year later– BILL MARKS: A year later. MICHAEL J. FOX: –I found
myself at a neurologist’s office because I’d gone to a
physical therapist who said this is neurological. So I went to a neurologist’s
office and he– I did the battery of tests. I mean, still today, we
haven’t got a biomarker– we haven’t got a way to identify
it so you do this drunk driving test, which I failed. And then he sat me down. He said, you have Parkinson’s. You have Parkinson’s disease and
you have 10 years left to work. And it was just, wham. And it took me a long time to– I mean, I remember going
outside, leaving the doctor’s office, and it was just
this rainy day in New York. And I just went, what
the hell just happened? And I even had– I have to confess– I had feelings like,
don’t you know who I am? You can’t be pronounce
that I have Parkinson’s. That’s not in the script. And so that was the
beginning of my journey. BILL MARKS: Must have been
a stunning thing to hear. MICHAEL J. FOX: It
was pretty shocking. And I told my wife– I came home and told my wife. And it was just like– we had a young son, who was two. He’s 27 now. But he was really young. And we just didn’t know
what the future held. But I’ve always been,
if not optimistic, I tend to look at
things positively. And I knew that there
was something in there. All the way along
the first few years, I knew that there
was something to– that this was– there’s
possibility in here and there was opportunity
to change the way I looked at things, at the
very least, in adapting to it. And something good
might come of that. BILL MARKS: Were you treated
with meditation right away once the diagnosis was given? MICHAEL J. FOX: I
was given medication, but I treated it like Smarties. I’d just throw it in my pocket. If I was feeling
twitchy, I’d pop a pill. And I really did it haphazardly
and had dyskinesia as a result. I had big swaying movements. BILL MARKS: Even early on? MICHAEL J. FOX: Yeah. From the drugs because
I was taking too much. Because I didn’t educate
myself about the disease. And then about four
or five years in, I started to really
talk to my doctor and I kind of went,
this isn’t going away. I haven’t changed
toothpaste and all of a sudden been
better and gone, oh, it was the
toothpaste all along. It was– I knew that
I was in it and I had to educate myself about it. So I did. And so that brought
me to a place where before I started
the foundation, I was in Washington testifying
about the need for funding. And I talked to doctors who
said the science is ahead of the money. They kept saying to me, the
science is ahead of the money. And I thought, well,
that’s what I’m going to– I’ll chase the science. It was kind of a flip
on the Watergate thing. It’s not follow the
science, follow the money. And the money will
follow the science. And so that got into
my head and I just knew that I needed to
treat this like a business and treat it like– our goal was to go
out of business. And we need to look at it from
a scientific point of view, from a business point of view,
from an academic point of view, from a patient point of view. And we managed to do that. BILL MARKS: Before
you went public, you had a thalamotomy, right? MICHAEL J. FOX: Yeah. Yeah, before I went public. BILL MARKS: And a
thalamotomy is a very precise therapeutic lesioning procedure
of the area of the brain that’s generating the tremor. MICHAEL J. FOX: It’s 20th
century [? tripponing. ?] BILL MARKS: How did
you decide to do that? MICHAEL J. FOX: I had huge
symptoms on my left side. And I was doing a show
called “Spin City” and I was finding
myself doing scenes where I was sitting on my hand
because it just wouldn’t stop. And it just was– I mean, everything I did was– I was acting and I
was doing my job, but I was involved
in misdirection and sleight of hand
and just finding ways to lean on desks and to– because my tremor, if I did
something, it would rest. So if I moved this– so I would be doing a
scene and I would just do that for no reason. And so I thought– I talked to some
neurologists and they said, we can diminish the
tremor on that side by doing a small incision
in your thalamus, which is called a thalamotomy. So I did it and it worked. BILL MARKS: It helped? MICHAEL J. FOX: But then it
started on my right side. So I wasn’t going
to go back in again. And it was a stopgap
measure that– I don’t know that I
would do it again. But I don’t resent the
fact that I did it. I don’t resent the doctors that
did it and I don’t regret it. But I wouldn’t do it again. Because if you’re going to– I mean, the next time
they go to my brain, they’re going to
have it figured out. BILL MARKS: Todd,
you’re a neuroscientist. How did you become interested in
working on Parkinson’s disease? TODD SHERER: I was fooled into
working on Parkinson’s disease because at the time, when
I was in graduate school, and still one of the common
theories in Parkinson’s is that there’s really
a selective loss of a very specific
population of cells in the brain that produce
dopamine in the substantia nigra. And at the time
of diagnosis, it’s believed that already
80% or so of those cells have degenerated, before
the symptoms start. So as a naive graduate
student, I thought, well, it wouldn’t be so hard to
just save 10% of these cells and then we’d have
cured Parkinson’s. And of course, we know it’s
much more complicated than that. But just the academic challenge
of that drew me into this. It seems to me a
very solvable disease if we can push the science
and fund the right science. BILL MARKS: And so you
were a grant recipient of the foundation just a
few years into its creation. And then how did you
end up becoming staff? TODD SHERER: It’s really
hard being a grant recipient of the foundation. It’s much easier
being the grant giver. [LAUGHTER] But actually, one of the
things that really impressed me when I had my grant was that
the foundation is very focused on accountability. And having a fellowship
from the foundation, I still had to come in and
report on what I actually used the money for, which
is not actually that common in the granting industry. And what was really
exciting about that is I actually got to meet the
other grant recipients. And it really
improved my research and it developed this network
and I got access to new tools. And it got me really excited
about this new way of funding and pushing research forward. And at that time, when Michael
and Debi were expanding the activities to look to
bring on internal scientists, to have that opportunity
to have this broad impact across the whole disease,
rather than just be focusing on your one molecule
of your one project, was really exciting to me. BILL MARKS: Michael, can
you describe a typical day with Parkinson’s disease,
if there is such a thing? MICHAEL J. FOX: Well, I
don’t have any typical days. In general, I don’t go to work
in the same place every day. So I never know what to
expect on any given day and I might have commitments
or responsibilities and I’ll titrate my
medication according to what I want to have to do. I don’t take pills
at 9:00 and at 11:30. I have areas that I– and some days, I feel better. I mean, I come to California,
I feel a lot better than I feel in New York. [LAUGHTER] High pressure is better
for me than low pressure. Humidity is tough for me. If I eat protein,
it’s tough for me. So I’m always doing
different things. But a typical day is I
get up and I literally– someone once said
to me that it used to be the hero’s journey
was to slay the dragon and save the princess. But for me, the
hero’s journey is putting one foot in front of the
other and getting out of bed. And literally, since
I’ve had this problem with gait and with falling, I
literally get up and think, OK. [GRUNTS] And it’s– again, you look
at things differently. And I look at that as
an incredible gift. I look at that as– to live that metaphor is so
rewarding and enlightening and it just opens
you up to everything. Because it really is
about that step and I don’t know what to
expect after that. I could go head into the
toilet and crack my head open. So that’s a possibility. And the next moment, I get
through it and I don’t do that. Then that’s a success. I can build on that. And my day is– a typical day is
just building on relationships and being open to my family
and how they react to it. And realizing that
it affects them, too. And again, this feeling that–
and this understanding that no one dies from Parkinson’s. You die with Parkinson’s. And so I’m living
with Parkinson’s. And my family’s
living with it, too. And so I respond
to how they react. And I respond to
how I’m feeling. And it’s why this work is so
rewarding because it gives me a feeling of usefulness and that
I’m doing something productive. BILL MARKS: It’s really common
for people with Parkinson’s to talk about how difficult
it is in the morning since they have gone all
night without medication. Do you find you can
count on your meds once you have taken them? MICHAEL J. FOX: Yeah. But I like– I play this
game of keep-away with them. I like to forestall
it as long as I can. But– BILL MARKS: Why is that? MICHAEL J. FOX: Just
because it’ll go– because if I can bump up– if I don’t have to take it at
8:00 and I take it at 9:30, then I don’t have to
take it till 2:00. Then I’m good into the evening. It’s funny to be– I try not to be
a prisoner to it. I try to be– to have it be a
living relationship between me and my treatment. That we– it’s give and take. And you play games that– I was saying to
someone earlier, when I go to my doctor’s and my
movement disorder specialist, she’s doing– this kind of
comes in with this information devices that you
guys are working on. I go in and she has a list of
questions about how I’m doing. And she has a graph
from zero to five. So I instinctively want
to get those zeros, which means I don’t have the symptom
that she’s talking about. BILL MARKS: Typical
overachiever, right? MICHAEL J. FOX: But I
do have the symptoms. But I say– I meet up so I’m
really in good shape and I do my walking really well. And I do all my
stuff really well. And she’s like, you’re great. And I’m like, not really. But– BILL MARKS: And
this is a key point. What you’re pointing
out is the snapshot that the doctor gets in the
office doesn’t necessarily reflect what’s going on. MICHAEL J. FOX: Yeah, exactly. It’s anecdotal. And we are, in many
ways, the best reporters of our situation,
of our condition. But in other ways, we’re
not because we’re just pure humanity, human
instinct, to want to be the best you can
be at any given moment. So the idea that
there’s a device that you can just
hand to your doctor and he or she gets the
complete rundown of what your day, your week,
your month has been, how your movement is
responding to medication, how much rest you need. It’s an amazing thought that
you can turn your experience into information that helps
people that are in a position to do something about it. BILL MARKS: Question for you. People may notice a little
bit of the writhing movement that you have, the dyskinesia. Can you comment on what that’s
like and what it’s all about? MICHAEL J. FOX: Moments when
you’re the focus of attention, it gets you twitchy. So it’s just a reaction
to the medication. There’s something–
there’s this drug that I take called amantadine,
which is a [? found ?] drug. There are many drugs
that treat diseases that don’t have cures
or therapies that pretty much resemble a cure. And so amantaine was a drug that
was used for old people that had the flu. And it happens to
diminish dyskinesia, but it’s harsh on you. After a while, you see
spiders in the corner, stuff moving that isn’t there. So it’s a trade-off
with everything. You try to do as little
of that as possible. I could get myself
still, but it would be at the expense of my
articulation and my– BILL MARKS: Todd, I think
Michael’s bringing up one of the clinical issues,
the motor fluctuation, the trying to balance the
good function without being too slow or too dyskinetic. Are there efforts
that the foundation has supported to try
to help with some of these day-to-day
symptomatic needs? TODD SHERER: Yeah There’s
a lot of research going on in this area. One of the main
areas is to just see if we can get a better standard
delivery of the medication. Michael was talking
before about how he’s trying to time his
medication throughout the day to have the optimal benefit. But there’s a lot of
research to just try to see if you could
reformulate the medication, either with a patch delivery
or more rapid onset delivery, just so you can get a more
continuous, consistent, more predictable day. And a lot of that is
driven by the disease, but also by how your body
is handling this medication. BILL MARKS: One
comment that Michael made was repurposing drugs. And I think it’s been
really brilliant, what one of your programs has done,
if you want to describe that. TODD SHERER: Yeah. This is a big effort not just
in Parkinson’s, but an effort we’ve focused on,
which is there’s a lot of commonalities
in the underlying biological mechanisms
across disease. And you could take advantage
of some of the innovations that have been made to develop
molecules or compounds in other diseases and now apply and
test them in Parkinson’s. Right now, there’s
a large trial going on looking at blood
pressure medication as actually a treatment
for Parkinson’s because the same
calcium channels are involved in the nervous system. So there’s a lot of efforts. The whole point of this
is to try to short circuit some of the slowness of the
drug development pipeline and take advantage of
existing treatments and apply them to the disease. BILL MARKS: And Michael,
was that your intent in creating the foundation,
to find new drugs or find a cure or all the above? MICHAEL J. FOX: It started
out to find a cure. We realized that there were
no pathways to the cure. There’s all kinds of silos, but
there are very few throughways, pipelines. And so as we evolved,
we found ourselves with a whole new issue, which
is finding drugs and therapies, improving what was
there, and incentivizing drug companies to take us on. Because at a million, we’re
a relatively small population of sufferers or
people that have it. And so we have a
drug company and we’d say we’re working on
a compound [INAUDIBLE] and we’d give a multibillion
dollar corporation $5 million to keep their eye on the ball. And then we, in some situations,
we had a big follow-on funding, once those results were good. And it was just that– I credit these guys with
it, who came up with it. And it’s been amazing,
our relationship with pharma, who I always kind
of thought of as bad guys. But we found a way to work with
them and have good results. BILL MARKS: Have the
goals of the foundation changed from when you
first envisioned it to what you think
is important now, or do you feel there’s
a certain constancy? MICHAEL J. FOX: Well,
I just didn’t think– I didn’t see that we
would do so much– just finding new
ways to approach it. I thought it was, you find
scientists and you fund them. But it’s bigger than that. It’s finding
scientists and knowing what you want from them. And that’s one of
the reasons that they talk about accountability. I remember saying
in early meetings, we’re going to give
this guy $2 million and he’s not going to come
and tell us what he’s doing? I wanted to give
him a report card. I want to withhold funding if
it’s not going in the direction that we expected. BILL MARKS: So this
philosophy came from the top, it sounds like. MICHAEL J. FOX:
Well, I kind of– I’m like Chauncey
Gardiner and being there, I just kind of spout. No endowment. Money comes in, money goes out. Just like little
[INAUDIBLE] and the debt translates into policy. BILL MARKS: Yeah,
this is fascinating. So you said money comes
in, money goes out. There is no endowment. You raise the money each
year and you spend it. MICHAEL J. FOX: Yeah,
that’s what it’s there for. We don’t want to sit
on a pile of money. It’s not doing anybody any good. So it goes in, it goes out. And science is
ahead of the money and I can think of
a million others. So I just feel
confident that we’re going in an innovative
direction and we’re doing it in a new way, which is
what all of you are about. BILL MARKS: Speaking of
innovative directions, Todd, can you give us a sense
of the scope of work that the foundation
has supported and is supported over the years? TODD SHERER: Yeah. We leave no stone
unturned, but we are focused on really
developing new treatments. A lot of this is now
coming out of really novel genetic discoveries. Parkinson’s, in the
past, wasn’t thought to have much of a
genetic component. But we’re now uncovering a
lot of the molecular biology and underlying science to
develop new treatments. So there’s a lot of
work the foundation does to build that knowledge base
around these new targets and directions and
early drug discovery. And more importantly, now, we’re
doing additional work on really how we’re going to go and
test these therapies to see if they’re actually working. Michael was talking
about the exam that is done that involves
tapping your nose and tapping your feet,
and then the doctor gives you a one or two. The whole basis of a
multimillion dollar clinical trial is based
on those outcomes. So it’s a big effort
the foundation has on trying to improve the
outcome measures that could be used in trials, both
biologically and clinically, with some more of the
objective measures. And the other thing that
I think is important is to get a better handle on
really the natural history of the disease and the
variability of the disease that the foundation’s
working on. You asked Michael what
his typical day is. There’s also not a typical
Parkinson’s patient. So you have varied patients
having varied types of days. So we need to make
more sense of this again so we can
really understand how the drugs are
working, and that’s a big effort the foundation has. This baseline that, then, all
the companies and all the drug developers can build on top of. BILL MARKS: This is PPMI
you’re referring to. TODD SHERER: PPMI, right. BILL MARKS: Can you just
talk a little bit more about what PPMI is? TODD SHERER: Yeah. PPMI is the Parkinson’s
Progression Markers Initiative. That is a large scale,
natural history study of Parkinson’s and people
at risk for developing Parkinson’s. It’s in 35 sites
throughout the world and has rigorous clinical
data, biological data that’s collected,
genetics, neuroimaging. And it’s developed
as an open platform, so all the data is made
available in real time. It’s a collaborative
between the academics and the pharmaceutical
companies that is spearheaded through the foundation. And the goal of this
is to really establish a new framework for how we
would do clinical trials, particularly trials of drugs
that would slow the disease. We talked before
about treatments that could reduce
some of the symptoms, but ultimately, we
want a treatment that can slow the
progress of the disease. And in that case,
we need to have a better understanding of
how the disease is actually progressing, both
clinically and biologically. BILL MARKS: We’re going to
open it up for questions soon, but I wonder, Todd,
if you had thoughts about what an
organization like Verily might contribute to
advancing the field. As you know, this is a room full
of hardware engineers, software engineers, computational
biologists, clinicians, clinical researchers,
and so many more types of people, basic scientists. What can we do to help? TODD SHERER: I think the work
that can be done here really would be fundamental to how
we can change our potential for developing transformative
treatments for Parkinson’s. We now are in a position
where we have an ability to collect a vast amount
of data from people with Parkinson’s at the
extent never before. And if you think
about the study I just talked about, the
PPMI initiative, we have whole genome sequencing,
we have brain imaging, we have proteomics, RNA
sequencing, clinical data all being collected over time. We would love to
have, obviously, more objective clinical data. So using technology to
track the course of a day, so it’s not just that
half hour with a doctor, to get the clinical sense. But then, how are
we going to utilize all of this information and data
to make sense of the disease? So we have the input happening. How do we, now, make that
output, the analytics, and really the innovation
on that information? And I think the
kind of personnel that are here feed into
all of those components that are critical to really take
Parkinson’s from 1817 to 2017. BILL MARKS: I agree. I agree. I’m going to wrap up my
questions with two of them. And I have a
feeling you’re going to want to answer with the
optimistic answer last. So I’ll start with a
more pessimistic one. What have you been
frustrated by? What hasn’t really materialized
in the last 10, 15 years? MICHAEL J. FOX: Well, a cure. BILL MARKS: A cure. MICHAEL J. FOX: But I
was talking to the guys doing– they’re working on
the Liftware and devices that help a Parkinson’s patient
live on a day-to-day basis. And just be normal, feel normal. Liftware is spoons that
neutralize tremor and is really great stuff. And I was saying earlier
that issues that I deal with, like just walking–
it’s called festination, where your footsteps get so
synchronized that you get to a point where
you’re frozen and then you tip over like a tree. There’s nothing you
can do about it. But there are
tricks you can do– counting or keeping
your shoulders back and making big steps. But it’s just all
this thinking you have to do all the time to do
this and that’s all you do. And I have a hallway in my house
where I go around the corner and there’s a door
to the hallway. There’s a door to my closet,
which is just around the thing, and then the door to my
office, which is next door. So I have to work
with all these doors. And I had to put tape
down on the floor so I could step over the
tape so it would remind me to take a step and to
not get shuffled and fall into the closet. And my wife said, we
love you, but can we get rid of the freaking tape? And I said, I can’t. I’ll wipe out. And that, to me, seems like a
simple thing, to some way deal with– to look down and create
a beam for yourself that discrete and
invisible to anyone else, and you can step over it. This is the kind of
stuff you guys do. Just to alter the reality in
a way that you can function. And short of a cure,
that kind of stuff would be really valuable
and really important. BILL MARKS: You talked about
some of your frustrations on the flip side. What are you most
proud of, in terms of your work in
Parkinson’s advocacy? MICHAEL J. FOX: Well,
I’m just a happy guy. I just look at life
as endless opportunity and I wake up every day curious. And I think that’s as
important as anything, to wake up every
day and say, what is this day going to bring me? What is this day
going to bring us? What are the
possibilities in this day? And what are
outcomes I might see? Again, I live in acceptance
and not in expectation. But acceptance
isn’t resignation. It’s just
acknowledging the truth and being empowered by it. [APPLAUSE] BILL MARKS: I think we have
time for some questions, so we’d love to open
it up to the audience. We have some microphones
in the center aisle. Feel free to ask questions
of Michael, Todd, Debi. AUDIENCE: Hi. How are you? I’m Vanessa. I’m in the science team. I work with microbiomes and
I had a couple of questions not related to microbiome. In diabetes, we have a pump and
you have the glucose monitor, so you can kind of titrate your
insulin treatment depending on your glucose in your blood. So I was wondering if you could
titrate the treatment depending on your physical symptoms. So if you had, for
example, this watch that is monitoring your
movements through the day, would that inform how you
would titrate your therapy? And on that note, what are
the challenges of using things like the equivalent of
an insulin pump or patch for just giving therapy to the
patients, Todd and Michael? TODD SHERER: So I’ll start
and Bill could help, too. So I think, first, the
answer is, in terms of having an objective measure
and titrating your medicine, the answer would be
this would be a goal. One of the challenges we have
is, in the diabetes example, you’re actually measuring
a real-time biologic impact of the drug. So that is a need in
Parkinson’s, still, to understand more of the
biology and have a biomarker. But we could use an objective
measure of the motor symptoms. And if the patient could start
to identify when they think their medication is
starting to wear off, objectively, they could actually
preemptively take the medicine. So that instead of a patient
maybe going like this during the day with
their medicine, if you could kind of
see, I’m about to go off, take your pills, so
as that kicks in, you never hit that trough. I think that is a
real possibility with the technology. In terms of the
delivery of the drug, the real challenge with
the pumps have been just the biochemistry of levodopa–
which is the medicine that the patients use– the dosing that’s
needed and being able to formulate enough of
it into a pump that would last the entirety of the day. And there’s projects that
are working on that now. But so I think there’s
a lot of parallels. More research would be needed to
get to the implication of that. BILL MARKS: Do you really
want to screw around with all the stuff? Looking at watches and– MICHAEL J. FOX: To
me, it’s simple. It’s simpler than sitting
there for half an hour. And I’m grateful that my
doctor gives me a half an hour. Most patients don’t get that. But yeah, I mean, to just have
an impartial, factual record of what you’re experiencing
and to have someone be able to look at that graph
and say, here are your problem areas, here’s where you’re
having difficult transitions and then try some
medication accordingly. Because I answered questions
about my typical day– and I didn’t say that–
but that’s the thing. A typical day is
managing symptoms. And you do everything
else around that. I can’t say it’s tiring
or exhausting or annoying or frustrating or saddening
or maddening or anything. It just is. Again, it’s the idea
of the fact of it. It just is, so that’s my
thing I work on all day. How am I going to get to
a place that I want to be, where I’m comfortable? BILL MARKS: You just said this
is what you work on all day. MICHAEL J. FOX: Yeah. BILL MARKS: Is
managing your symptoms. MICHAEL J. FOX: But it’s kind
of like walking or breathing. It’s just a thing
that I do and I just add it to my portfolio of what
I need to do on a given day. BILL MARKS: Another question? Tom. AUDIENCE: Yeah. My name’s Tom. I’m on the mental
health team here. MICHAEL J. FOX: We need to talk. AUDIENCE: We do need to talk. [LAUGHTER] That’s what I wanted
to ask you about. Thanks for coming, all of
you from the foundation. We appreciate your insights. In addition to the kinds
of devices that we work on, we think a lot here about
big data and analytics and how to find patterns in
very noisy, but often important data. Michael, I was
impressed by your story about putting that
tape on the floor. Almost everything
you’ve talked to us about is ways you’ve
found to cope and to deal with this disease so that
you can continue to function. And I suspect there are
another million people with the same disease who also
have tricks that they’ve found. Sometimes even
medications that they may have found
that they’re taking for asthma or for some other
problem that surprisingly helps them with their
Parkinson’s symptoms. Does the foundation have
a way of crowdsourcing that information, pulling
in from a million people and their families, what works,
what doesn’t, and then people like us can help to
make sense of that? Is that something that the
foundation thinks about? MICHAEL J. FOX: Well, you can
speak to it programatically, but on general terms– Todd talked about how
we’re specifically doing that, but one of the
big breakthroughs in this. Someone was asking
me earlier, what are the big breakthroughs
in the foundation. One of our big breakthroughs
was finding a way to incorporate patient
involvement and patient knowledge and wisdom
and enthusiasm. And the fact that it’s
about these people. So they can help us with
what we’re trying to do. So all those things I find
really fascinating when I talk to Parkinson’s
patients is that we all have a different disease. There’s a million of us with
a million different versions of it. We have things that we have
difficulty with that someone else may not deal with at all. I don’t– gastrointestinal
stuff, I don’t have. I never had an issue with that. I never had an issue with– until recently, I didn’t
have an issue with sleeping. But so this back and
forth between patients really helps doctors
and researchers. TODD SHERER: Yeah. So exactly based
on this philosophy, we’re in the process of
launching what’s just getting started, a project
called Fox Insight, which is an online platform for
patients to do exactly this. To collect information from
as many patients as we can and have them complete surveys
and also fill out information to just get more insights
in a kind of confined way on this information. And the data will all be made
available from that for people to dig into, both
surveys and free text and that type of information. So we see this as kind of
complementary to the– the PPMI initiative is a small number
of people and really deep. And this would be
as many people as we could get, but more superficial
kind of information. And then playing those
two off of each other to get as much
insights as we can. BILL MARKS: Another question? AUDIENCE: Hi. My name is James. I’m a scientist who also
works in the same department with our microbiome
expert over here. But to follow up on her
question about therapy, it sounds like you and maybe
Parkinson’s sufferers also have a pretty
complicated relationship with their therapy that they’re
taking, their medications. And I’m wondering, is
compliance with the therapy or the regiment a
challenge that is faced with trying to interpret
information coming off a clinical trial, or even
to manage the disease? And are there
solutions that you guys are looking at that might be
a way to amend that problem? BILL MARKS: So maybe
a two-part question. The first for Michael. How difficult is it to manage
the medication schedule each day? MICHAEL J. FOX:
Well, it’s difficult, but again, someone who’s a
paraplegic has difficulties. Everybody gets their
own set of issues. And I’m aware of that. And it’s how you deal with them. How you deal with them
is an individual thing. And so I struggle sometimes
with getting it right. For the most part, if
I can function and do what I planned to do during the
course of a day, it’s great. There’s There are things that– like, I golf. And I’m a terrible golfer. I started golfing in my
40s with Parkinson’s. So if that’s not optimism,
I don’t know what is. But I was golfing the other day. And I’ll go to put
the tee on the ball and I’ll be there for,
literally, five minutes, putting it on and it falls off. I put it on and it falls off. I put it on and it falls off. I adjust the tee. I put it on and it falls off. I put the ball on slow. I’d get my hand away quicker. It falls off. And there’s three guys waiting. And it’s just, fuck ’em. [LAUGHTER] It’s going to take
as long as it takes me to get the ball on the tee. And then I end up swinging
and miss it twice. So it’s hang in. It’s a long day. And it’s just the way it is. So I do deal with
titrating the meds, but it’s just the way it is. TODD SHERER: I think, in
general, Parkinson’s patients, compared to other
diseases, are pretty compliant with their
medicine because they feel the impact of it. It’s not like, for example,
taking a high blood pressure pill, where– or an antibiotic– if
you forgot to take it, you don’t really realize
you forgot to take it. Michael will you realize if he
forgot to take his medicine. His timing may be
off, but it’s not like he’s not taking it at all. BILL MARKS: Any closing
thoughts that you would offer the group today? TODD SHERER: I guess,
just to reiterate, our thank you for including
us in your Grand Rounds and for your commitment
to Parkinson’s disease. And I do think
that for us to take the research to the next level,
which ultimately the goal is to bring the treatments
to the next level, will take this new
approach of bringing new disciplines into the area
and I think the model here is a great one for the field to
be following and integrating. Because that will really
bring us to the breakthroughs that we want. So thank you for all the work
you’re doing on Parkinson’s. BILL MARKS: Thanks, Todd. And Michael, any
closing comments. MICHAEL J. FOX: I just
want to say thank you. Thank you so much
for your interest and for applying your
intellect to our situation, and just for understanding
that all I’m here to do– separate from Todd, who
can speak about program and science– is to let you know
that you’re affecting patients, you’re affecting people. And then they have– my
experience is my experience, but they all have
their own experience. And yet, a common
bond between all of us is that we depend on people
and we depend on researchers and we depend on smart,
empathetic people that can figure out what we
need and help us get there. And I’m grateful for your
interest and for your actions. BILL MARKS: Well, we’re very
grateful that you visited us today. Thanks for your
inspirational comments. [APPLAUSE]


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