January 14, 2025 • 63 mins
Here I chat with Dr. Richard Bedlack, a neurologist known not only for his relentless ALS research but also for his unique style. This episode unfolds the fascinating story of how an encounter with legendary designer Manuel Cuevas led to the creation of a special jacket that embodies Dr. Bedlack's fight against ALS. We also celebrate the powerful alliances formed through advocacy, as highlighted by a heartfelt recognition from Zac Brown Band's John Driskell Hopkins. I loved hearing him talk about how fashion, music and medicine are all playing a part in the battle against ALS.
For 24 years, Dr. Bedlack of the Duke ALS Clinic has been at the forefront of ALS research, driven by a childhood fascination with the brain. His journey has been marked by pivotal moments that shaped his dedication to building a program offering hope and options for ALS patients. Here, Dr. Bedlack reflects on the significance of HOPE, not only as a treatment strategy but as a vital component of navigating life with ALS.
Dr. Bedlack also shares his learnings after studying the 62 known cases of ALS reversals. This episode is a testament to the relentless pursuit of a brighter tomorrow, where there is a world without ALS. Listen in and share with a friend. Hugs, Lorri
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Dr. Richard Bedlack (00:04):
hello hey lori, how's it going?
Lorri Carey (00:07):
it's going good.
How are you?
Dr. Richard Bedlack (00:21):
You may have seen the story behind this
jacket, but this one's extraspecial.
Lorri Carey (00:25):
Which jacket is that one?
Dr. Richard Bedlack (00:31):
This is the one that was made by a designer
named Manuel Cuevas.
He was the designer for JohnnyCash, elvis.
Elton John, David Bowie,Salvador Dali, Frank Sinatra,
Lady
Lorri Carey (00:47):
.
Dr. Richard Bedlack (00:47):
Gaga Turns out he has an ALS connection.
Oh my gosh.
I got to meet him and talk tohim for a while and tell him
what I'm trying to do differentat Duke and how it starts with
what I put on when I go toclinic.
And he loved it and he made methis jacket.
He did some research on me andhe made it in my favorite color
and he embroidered it withsymbols of all these families
that have helped me in my questto end ALS oh my gosh, that's
(01:10):
his own family symbols on there.
And he said this jacket is ourstory and you make sure you tell
it as often as you can.
Lorri Carey (01:16):
So oh my gosh, I love it.
Dr. Richard Bedlack (01:19):
So what came first, the um, your desire
to connect with that designer,and then, after you were talking
to him, you found out he had aconnection absolutely so oh my
gosh, I've loved fashion since Iwas a kid and I just happened
to be at a at a meeting a coupleof years ago in nashville,
(01:40):
tennessee, and I had a freeafternoon and I said to my wife
I want to see if I can meetManuel Cuevas.
He's been one of my heroes infashion my whole life.
I mean he's 92 years old.
He started before I was bornand said I'm going to go out to
his studio see if he'll meetwith me.
Sure enough, he was verywelcoming and first question he
(02:03):
asked me is so tell me again,what band do you play in?
And I said, believe it or not,sir, I'm not a musician, I'm
actually a neurologist and Itake care of people with a rare
disease called ALS.
And his jaw just dropped.
He said did you know?
I lost my wife to that disease.
I said I had no idea like.
I've been reading about thepieces of clothing you make and
(02:25):
seeing them in movies and at theGrammys and things like that,
but no, I had, I had no idea ohmy god, I have chills.
Lorri Carey (02:33):
I thought you were gonna say, like you know, a
second cousin or a friend of afriend, or incredible.
I mean, I still get the chills.
Dr. Richard Bedlack (02:40):
it's like it's almost like we were meant
to meet and we've we've actually, I'm happy to say we've become
friends.
I've, you know, contacted himand his wife many times.
I got to go out and stay withthem at their house in rural
Tennessee.
A few months ago, my wife theyinvited my wife and I for a
weekend, so we got to go intowhat I call the adult Disney
(03:02):
world, which is his fashionstudio.
I've never seen so many amazingand crazy pieces as he's
working on.
Lorri Carey (03:09):
Wow, that's crazy.
Okay, so the last time we saweach other was in Atlanta at Hop
on and Care what?
Dr. Richard Bedlack (03:25):
a night.
Oh, oh, how special was thatit's one of the best nights I've
I've ever had in my life.
I mean it was yeah it wasalmost like a dream the people
that I got to interact with, thethings that I got to partake in
, you know, and then, on top ofall that, to get called up to
the stage to to get, you know,recognized for my work and you
(03:49):
know I still have it right herenext to my desk my prized
possessions.
I got one of my John DriscollHopkins Western shirts.
There's a couple of pieces ofclothing that I I care too much
about to wear, like I have thesein my office, because I look at
them and they remind me ofmoments.
That's one of them.
Lorri Carey (04:07):
Oh my gosh, I forgot that.
He gave you one of the shirtson his back.
Basically, he's such a nice guy, sure is and yeah, I had no
idea that you were going to bethat Hopinacure was going to
award you, you know, withfunding for your research.
So that made it extra specialas well.
(04:30):
So I can't believe that by theend of the year they will have
donated $3 million for ALSresearch.
So I'm so proud of them.
Dr. Richard Bedlack (04:48):
Yeah, they have they have an incredible um
platform yeah, you know music.
Is is universal zach brown band, of course is is beloved all
over the world yeah, but I mean,to take it to the next level,
that the whole family, theHopkins family, is so
charismatic and thoughtful, andI just love listening to what
(05:11):
they have to say because Ialways learn something from them
.
Lorri Carey (05:14):
Yeah, very, very brave family too.
So well, let's jump back alittle bit.
For those that aren't in ourALS community.
They might be wondering why didI start off by talking about
your clothes, and who is thisguy?
So why don't you, you know,just do a little introduction of
(05:37):
how you're known in the ALSspace?
Dr. Richard Bedlack (05:41):
Yeah, I'm Dr Rick Bedlak.
I'm a professor of neurologyhere at Duke and I started, and
still lead, the Duke ALS program.
And well, I guess it dependswho you ask in terms of how I'm
known.
But you know, if I can't be theguy who cures ALS, I want to be
known as the one who created alot of options and hope for
(06:03):
people living with this disease,and we're going to talk a lot
more about that hope word.
Yeah, as to me, as I look backover my career, which is now 24
years, I feel like that'sprobably something I've been
especially good at isunderstanding the importance of
(06:23):
hope and trying to become abetter hope giver, and I think
I'm pretty good at it.
I'm actually going to beputting out a movie in 2025.
There's been a lot of great ALSmovies, as you know, but this
one's a little different becauseit talks about what it's like
to be an ALS doctor, and it'sdefinitely not an easy job.
(06:45):
It's actually getting harder, Ithink, over time because of the
medical system that we have andhow it's changing, but I feel
like I've been able to staypositive and generate a lot of
hope for my colleagues, but alsofor the patients and families
who come to see me here at Duke.
Lorri Carey (07:02):
Yeah, I would say that as well.
And so we've been in the ALScommunity about the same time
you longer than me, but I've,you know, going on 21 years, and
then I've had ALS.
And I will say that if I'mtalking to someone about you,
I'm like, you know, dr Benlack,the guy with the really cool
(07:23):
suits and the guy that gives alot of hope.
So you're right on, and that'show you're known.
I know you've been focusing onALS for a long time.
How or what initially inspiredyou to focus on ALS?
Dr. Richard Bedlack (07:46):
Yeah, well, let me back up and you can edit
this if it's too long.
But I'll back up all the way tomy childhood.
There were two weird thingsabout me.
When were you born?
Two weird things about me froman early age.
One was the clothes.
You've already touched on that.
But from the day that my parentslet me pick out my own outfits
for school which I think was ateither Sears or JCPenney I liked
(08:09):
really loud, crazy combinationsbecause I felt like they were
almost a suit of armor to me.
They would allow me to protectmy positivity no matter what I
ran into.
And I started to notice howthey rubbed off on people around
me.
Like back then it was hey, youknow these bullies who used to
steal my lunch money.
Now they see this and they'relike look at this crazy kid, wow
(08:30):
, this guy, what an outfit.
And they would leave me alone.
So it worked two ways.
But the other weird thing aboutme was, before I even fully
understood what the brain was, Iwas captivated by what I would
later come to know as neurology.
Like one of my first memoriesis rolling my little brother
down this hill in our backyardand having him get up and kind
(08:52):
of stagger around and wonderingwhat's this?
And I rolled myself down thehill and I'd experienced that
spinning sensation.
And I'd run inside to my momand I'd say you know, mom, how
come, when we go down the hilllike this, we feel like we're
spinning.
Or I would see somebody out inpublic who shuffled when they
walked or their hands shook, youknow, when they wrote.
And I'd say, mom, you know whydoes this happen?
(09:13):
And you know, my parents werefantastic, they really loved us,
but they didn't have a lot ofeducation or a lot of money.
And so my mom would say writedown, and on Saturday I'll drop
you off at the library and youcan try to figure this out.
Oh my gosh.
I had this great local librarianwho would pull these books off
the shelves and we would sitthere and try to understand what
(09:35):
I was seeing.
And it always came back to thebrain, like what I was
fascinated by was alwaysconnected in some way to the
brain and it led me to likeprograms, eventually to a
neurology residency, and that'swhere I first came in contact
with a person with ALS and itjust captured everything that I
(09:55):
was fascinated by.
Since I was a kid.
I'd never heard of a story likethis where a disease could take
out one part of the body sospecifically, so quickly and for
no good reason, and I'd neverseen a collection of exam
findings like that in one person.
And I remember when myattending physician walked into
the room and said well, it'scalled ALS, we don't know why it
(10:17):
happens and there's nothing wecan do about it.
You just have to go home andget your affairs in order.
And I drove home that day and Isaid I think I found the
disease that I want to fight andI'm going to stay at this
institution and I'm going tochange the culture.
I'm going to build a programthat's going to give people
options and give people hope.
Lorri Carey (10:36):
Oh my gosh.
So this is, right off the bat,way more than your job, way more
than really your career, morethan your job, way more than
really your career.
I mean it's like your interest,your hobby, your passion, kind
of all into one right.
Dr. Richard Bedlack (10:52):
Well, I'm, in a way, blessed that I get to
wake up every day and I get towork on a problem that I'm still
absolutely fascinated by, and Iget to do it in a way that
incorporates who I am as aperson.
I don't have to change thethings that bring me joy.
I can incorporate those into mycareer and they make me even
(11:15):
better at what I'm trying to do.
So I feel really lucky to beable to do that.
Lorri Carey (11:20):
Yeah, so you're talking about like your first
encounter where you were.
You had already decided thatthat's not good enough.
I'm going to do something aboutthat in the future, but is
there anything that happened?
Anyone that you met orencountered that along the way
(11:40):
just kind of sealed the deal,you know, on your commitment to
ALS research as a life, as a youknow, a life project.
Dr. Richard Bedlack (11:51):
Well, there's been so many different
patients and families that havechanged the way that I think
about medicine, have changed theway that I think about ALS,
both in terms of a doctor and aresearcher.
There have been so manypatients and families that have
rescued me when I was on theedge of just quitting and doing
something else.
(12:12):
But if I had to pick one, thatreally just completely changed
the direction of my career.
You know, I started offtraveling around.
I had no ALS mentor here, so Iwas traveling around the country
and talking to the experts,watching them, you know, examine
patients, watching theirmultidisciplinary teams, reading
every article and book I couldget my hands on.
(12:35):
I was learning the science ofALS care what things are we
supposed to measure and what arewe supposed to offer at
different measurements?
And then one day probably Idon't know four or five years
into my career, I walked into anexam room and I was struck
immediately by three unusualthings.
One, here's the youngest personI've ever seen with what would
(12:56):
turn out to be ALS.
He's about 20 years old,sitting in the middle of the
room in a wheelchair.
Two, I've never seen this manypeople jammed into one room.
Probably at least 15 to 20people jammed in there could
hardly move.
And three, this is the wildestlooking bunch.
They look like they're on theirway to like a punk rock concert
.
They have mohawks and piercingsand tattoos.
(13:16):
Everybody's got tattoos.
And I'm talking to him, I'mexamining him, I'm explaining
you know what I can do and,unfortunately, what I can't do.
And when we came to the end ofmy explanation I said can I ask
y'all one question?
I couldn't help but noticethere are all these tattoos of
swallows.
Like I noticed, the patient hasa whole sleeve of swallows and
(13:40):
everybody else in the room hasat least one.
And he said yeah, I told you,als runs in my family.
My mom died of it when I wasreally young.
I didn't get to know her, butshe left me this book and on
every page of the book there wasa swallow.
She just drew a swallow.
I don't know why, but when Igot to be 16 and my dad said I
could get a tattoo, I got everyswallow from that book tattooed
(14:00):
on my arm to honor the memory ofmy mother.
And then, when I started to getsick, we kind of knew what it
was.
Everybody I knew got one ofthese swallows from my arm
tattooed somewhere on their body.
And this is to show oursolidarity.
We call ourselves the oftenawesome army and we're always
going to come here together andwe're going to keep this upbeat
(14:21):
and positive.
And I was like wow, this isdifferent, and they did.
You know, every single time hecame, as sick as he got, he was
surrounded by this often awesomearmy.
We laughed.
They told me these incrediblestories.
They made the series of YouTubevideos that's still out there,
called often awesome the series.
And you know when we, whenwe're coming to the end of his
(14:44):
journey, I said, man, I'velearned so much from this that I
didn't find in any book or seein anybody else's bedside
approach.
I don't ever want to forgetthis.
I want to be in your army.
I want to get one of thesetattoos.
I did a little research to makesure it didn't have some hidden
meaning that would get me fired.
It turns out it's a tattoo thatsailors used to get because
(15:07):
that's the first bird you seewhen land is approaching.
So for them it meant theyweren't lost at sea.
And I got it right on my wristhere because the last thing I
used to do before electronicmedical records is sign the
chart.
So it would pop out of thereand it would remind me.
Hey, in addition to all theevidence-based stuff, hope is
really important.
Not everyone has an oftenawesome army.
(15:29):
Sometimes that's got to be me.
So if I haven't already saidsomething hopeful.
I need to go back in there anddo that, so that has always been
part of my practice since I metthat young man and his family.
Lorri Carey (15:43):
And are you allowed to say his name?
Dr. Richard Bedlack (15:46):
I do not believe it or not.
Have official duke permissionto release his name?
Oh yeah if people go online andlook up often awesome this
series on youtube, you will findhis name so okay, often awesome
army often awesome army.
Lorri Carey (16:03):
Yes okay, great, all right, and I can put a link
in my show notes to that as well.
Yeah, to my listeners, I won'tput a link in the show notes
that you can find on facebookand the website, both at I'm
dying to tell you podcast, and Iknow I'll have several other
(16:23):
links there as well.
So, besides your awesomewardrobe and your incredible
outlook and the hope that yougive, has found 61 cases of ALS
reversals.
Dr. Richard Bedlack (16:54):
Yeah, 62 now.
Believe it or not, we justfound a new one a couple of
weeks ago.
We keep finding them.
Unfortunately, we hear about alot of people who are saying
they're having an ALS reversal,and most of those we are unable
to verify.
But from the beginning of time,it is no test we do.
There's no picture.
We take blood tests.
We do, biopsy we do.
(17:14):
It's a set of criteria.
So they all have the righthistory, the right exam, the
right EMG, the right testing formimics.
(17:34):
They all progressed to wherethey were disabled from weakness
and then they all recovered allor most of their lost motor
function.
This is a phenomenon that wasnot invented by me.
This has actually been aroundand reported in the medical
literature since the 1960s.
I only learned about itapproximately 15 years ago in
(17:56):
the midst of an ALS untangledreview, when I came in contact
with one of these people andjust about fell out of my chair
when I got their medical recordsand saw this was something I
had never heard of.
But I went back and realized,wow, these have been reported
but nobody's really paid anyattention to them, and so I'm
the first one who's trying toput them all in the same
(18:17):
database and figure out what'sdifferent about these folks.
How did they recover from ALS?
How do we make this happen moreoften about these folks?
Lorri Carey (18:25):
How did they recover from ALS.
How do we make this happen moreoften?
Yeah, before we talk about themagic question, you know the
common factors that they've allhad.
Why do you think that peopledocumented?
Dr. Richard Bedlack (18:44):
the reversals but did nothing more
with it.
Well, a couple of things.
I mean one I think that thesupposition was that these
people probably didn't have ALS.
You know, like that's the mostcommon thing I hear when I talk
about this is somebody willraise their hand and say, hey,
bedlock, if these people gotbetter than they never had ALS
in the first place?
Well, that is a possibleexplanation.
(19:07):
What I can tell you is today wediagnose ALS by checking
certain boxes, and they allchecked all those boxes.
Now, someday, if somebodydevelops a test that comes back
100% yes or no, I would love tosee all these people tested to
see if they have the same thingthat everybody else with more
(19:28):
typically progressive ALS has.
But until that day comes, noone can win that argument.
They have ALS by today'sdefinition.
There is nothing in anypublished definition of ALS that
says they got to do A, b, c, D,but oh, by the way, if they get
better, they don't have ALS.
That doesn't exist.
That's not listed in any of thepublished criteria for making
(19:50):
an ALS diagnosis.
I also think that doctors areincredibly stretched, and they
have been for a long time, moreso now than ever.
But if you go back and you readthese case reports, almost
every single one of them says,yeah, they recovered.
And I just said, well, I don'tknow what happened, but go have
a good life, you know?
And it's on to the next patient.
(20:11):
It takes an incrediblemotivation to actually add a
whole nother layer of research,a whole nother direction to what
you're going to work on.
Layer of research, a wholenother direction to what you're
going to work on without anyfunding.
(20:31):
Like when I first started this,nobody was interested in funding
this because most peoplethought it was never going to
lead anywhere and it might not,but I would say it has created a
lot of hope.
Just the mere acknowledgementthat this can happen it changes
the way I talk to people when Imake the diagnosis.
Talking about the research thatI do on these folks generates a
lot of hope that this ispossible.
Lorri Carey (20:49):
Yeah, and you know, with having ALS for 20 years, I
have talked to a lot of peoplethat have ALS and now, of course
, with the podcast, and I'mfinding even my guests, as I
interview them, are talkingabout hope and they refer to you
(21:11):
and they refer to.
There are some cases you knowthat have been documented, that
are true cases of ALS reversals,and those are awesome people
that I'm bringing on the podcastbecause they are very inspiring
and very optimistic aboutliving a life with ALS and part
(21:36):
of your work and part of thereversals you know is a reason
why so.
So that's interesting.
If someone is listening in andthey have ALS or their family
member has ALS, I guarantee whatis it?
Is it something they ate?
(21:58):
Is it something they do?
What is the commonality?
Dr. Richard Bedlack (22:16):
Yeah, lori, I would say so far, and I
haven't given up on trying tounderstand what's going on here,
but so far, the only thing thatI can see that all of them seem
to have in common is thatthey're all very positive people
.
Now, what I don't know is whichcame first, because maybe you
weren't a positive person, butsomebody said well, you got this
(22:38):
, you got two to three years tolive which I hate when people
say it, but they still do say itto people that way and then
they were proven wrong and theperson instead recovered and is
now living a normal lifespan.
That would probably change yourentire outlook on life.
You'd probably be a much morepositive and optimistic person
because of what happened.
(22:58):
So I can't say which came first, but from a scientific
standpoint, one thing that I'vediscovered fairly recently which
I think is fascinating is thatthere is a genetic abnormality
in these reversals.
It's not in all of them, butit's much more common in these
reversals than inethnicity-matched controls which
(23:20):
come from databases of peoplewith more typically progressive
ALS.
And this gene does somethingthat changes the brain levels of
a protein called IGF-BP7.
So this protein by itself hasnever before been talked about
or implicated in ALS in any way.
But this actually regulatesanother pathway which was of
(23:44):
great interest in ALS.
It's the insulin-like growthfactor 1 pathway, specifically
this protein that I foundIGF-BP7, it blocks the
interaction between the growthfactor and motor neurons.
So with less of this proteinyou can have a better
interaction, your motor neuronscan be more resistant to ALS and
you get a milder case and youcan recover from it.
(24:06):
So it's the first time there'sever been really a plausible
theory for how people mightrecover from ALS and it's a
testable theory.
And Now we did a very firstpreliminary test of it with a
group called ALS TDI and what weasked them is could you look at
the blood levels of thisprotein and tell us number one
(24:29):
is it different in people withALS and people without?
And the answer is yes, it is.
It's higher in people with ALSand in fact, in the literature,
that protein is higher in peoplewith lots of different
neurological diseases MS,dementia, suggesting that it
really is important.
Two could you tell us is theprotein different in people who
recover from ALS versus thosewho don't?
(24:50):
Well, we didn't find astatistically significant
difference.
Now, we only had 11 people withALS reversals participating in
that study.
That's a pretty small number tolook for a statistically
significant result.
We also realized that the bloodlevels of this protein may not
reflect what's going on in thebrain and spinal cord, and so
(25:11):
what I think we need to do nextis go after this, and I already
have an idea for how to knockthis protein down and I think we
need to try to knock it down inthe spinal fluid.
We need to measure it in thespinal fluid before and after we
start this treatment, andhopefully what we will see is
that people stop or recover fromALS.
But if we don't, the nextquestion is did we actually
(25:33):
knock down spinal fluid proteinlevels?
Because if we didn't, well, wegot to go back to the drawing
board and find a different wayto do that.
Lorri Carey (25:40):
So is this one of the studies that you're
currently doing, then this oneis not.
Dr. Richard Bedlack (25:49):
This is all pretty new, Okay, and we're
still sort of putting a protocoland a budget and funding
together and hopefully we'llopen that trial in 2025, a trial
targeting this IGF-BP7 proteinto see if knocking it down in
the spinal fluid really doeschange the course of a person's
ALS.
But to me it's pretty exciting.
(26:11):
I mean, it is 15 years worth ofwork.
Somebody could say, well, man,that's a lot of work to still
not know for sure why this ishappening.
But I would say it's prettycool that after 15 years we
actually do have a plausibletheory with some evidence and we
have an idea for how we canmanipulate a target out of these
ALS reversals.
Lorri Carey (26:30):
Absolutely.
And you still have those peoplethat you've identified.
And you know, the more peoplethat you identify, the more
options that you're going tohave to look at.
So I am not a scientist at all,but when you talked about
insulin growth factor one, Iwill tell you that I was in a
(26:51):
trial year two, so that musthave been 2005, 2006,.
So that must have been 2005,2006.
With insulin growth factor one,I was giving myself two shots a
day for two years and I know Iwas getting a drug because I
(27:13):
would have hypoglycemia reaction.
I was not getting a placebo,glycemia reaction, I was not
getting a placebo.
So, and you know, at that timeI mean I was, you know, still
pretty strong.
My um FEC was really, reallystrong, so at the time I thought
(27:34):
it had done something for me.
Does that have anything to dowith that?
Dr. Richard Bedlack (27:41):
Yeah, it's interesting Laurie.
Yeah.
So the reason for the trialthat you were in is because
people made some observationsway back then.
One of the observations wasthat when you look across the
spectrum of people with ALS,some of whom are very fast
progressing, some of whom arevery slow progressing, there's a
difference in how muchinsulin-like growth factor they
have floating around.
People that are doing reallywell have more of it.
(28:03):
So next they took insulin-likegrowth factor and they gave it
to the mouse model of ALS andthe model did much better.
So they said well, now it'stime for human trials.
And they actually did severalhuman trials and they concluded
from these trials well, there'snot really much of a signal here
.
This idea is dead.
Well, maybe not so fast, becausesomebody actually, after all
(28:25):
those trials were done, said doyou all know that when you give
IGF-1 under the skin, it doesn'tget into the brain?
Also, when you give it that way, it doesn't last very long, it
has a very short half life.
So I would say that therereally isn't a conclusion from
all those trials.
Like, you didn't manipulate thetarget in the right place for
(28:46):
the right amount of time.
Therefore, you can't say theidea was wrong and it's it's
gonna.
It's not going to be easy tomanipulate IGF-1 in the brain.
You know it's it's.
It's going to be prettycomplicated to figure out how to
do that.
But what if you didn't have tomanipulate the growth factor
itself, but just this protein,igf-bp7, that gets in the way of
(29:06):
the growth factor?
Maybe this is a completelydifferent way to come back to
the same idea, but a much moreplausible way to treat it.
Lorri Carey (29:14):
Yeah Well, thank you for sharing that.
I know that a lot of people areprobably knocking on your door
as far as traveling all over theworld to come see you and hope
that you have that magic answerbecause you have that
relationship with these uniquecases.
So I'm glad that you arefinding some glimmer of hope and
(29:39):
some direction in all the workthat you're doing.
So you talked about alreadyworking with patients and how
you are giving them hope and notonly the patients, but the
families when they come in.
What is some advice that yougive someone that you see on day
(30:06):
one?
Dr. Richard Bedlack (30:07):
Yeah, great question.
Yeah, I mean just taking a stepback and talking about that
importance of hope.
Yeah, so in the years since Isaw the Often Awesome Army and
their effect on that one patient, I've done so much reading
about hope and I've really cometo believe, laurie, that it
isn't just an emotion, it isn'teven just a coping strategy.
(30:29):
Hope is a treatment.
If you look across almost everydisease where this has ever
been studied and it's not beenstudied well in ALS, I'm going
to change that in 2025.
I got a hope boostingintervention I'm going to study.
But every disease cancer, stroke, spinal cord injury, dementia,
heart disease people who aremore hopeful, they do better
(30:53):
medically, they have a betterquality of life, they have fewer
symptoms, are less likely to behospitalized, they live longer
compared to people who are lesshopeful.
And it just blows my mind thatwe haven't thought about this in
the ALS community Like, wow,yes, we should continue to try
to develop traditional medicinesto slow the progression of ALS,
(31:14):
but if there are other ways topotentially slow progression and
improve quality and length oflife, why would we not consider
those?
And hope is one of those thingsthat, to me, we really need to
get more focused on in thiscommunity.
So the things that I do.
First, lori, it starts with me.
How can I be a hope booster ifI'm not positive and hopeful?
Lorri Carey (31:37):
Yeah.
Dr. Richard Bedlack (31:37):
So, like I was telling you before, I've got
to think to myself what makesme positive and hopeful.
The clothes are one thing, butthere's other stuff I got to
remind myself that I have in mylife.
It isn't just possessions, it'speople.
I've got the greatest supportsystem a fantastic spouse, a
wonderful father, a greatbrother, so many friends that
(31:58):
keep me upbeat and positive, andso you know that sets me off on
the right foot.
Then, when I get to clinic, Ihave to be very careful about
the words I choose.
You know, when you break thenews to somebody about a disease
, what do you say next?
Really, they leave with a verydifferent impression and maybe
(32:19):
that impression can't be changed.
I can't tell you how manypeople I see that have been told
these exact words you have ALS,you have two to three years to
live, go and get your affairs inorder.
That's just soul crushing tohear the disease presented that
way.
It's also inaccurate.
You can't look at a person onday one and know they have
exactly two to three years tolive and tell them that that's
(32:42):
now when they need to go gettheir affairs in order.
I mean what I tell people islook, you have this disease.
It's a tough one.
It can be disabling, it can belife shortening, but it's very
different in different people.
There are examples of peoplewho've had this disease for more
than 10 years and still have anincredible quality of life.
(33:03):
I know a young lady who's hadit for more than 10 years and
still competes in marathons.
Stephen Hawking had it for 50years and was still writing
books exploring the mysteries ofthe universe.
There are these 62 people whorecovered.
We don't know how you're goingto do with this.
Let's take it one day at a time.
Let's make your life the bestit can be today.
(33:24):
Let's try everything we canthink of to slow it down, and in
a few months, if things havechanged, we'll do it all over
again.
We'll rethink our approach andthis is just one tiny part of
you.
It does not have to define you.
There are so many parts of youthat ALS does not have to touch.
It doesn't have to touch yourspirituality, it doesn't have to
(33:45):
touch your sense of humor, yourkindness, your compassion.
Those are the things that thatmake us who we are, not the
strength of our muscles and ourarms and legs.
Lorri Carey (33:55):
It's all that other stuff and ALS doesn't have to
touch that.
I love that and I talk to a lotof people who are just diagnosed
.
I get connected in a lot ofdifferent ways and I was just
thinking about I always offer todo a Zoom call, you know, with
them and their family.
And I was on Zoom with a younglady with children and she was
(34:20):
in her car in the driveway.
She didn't want her family tohear.
She was on the phone and shewas just so engrossed in what
was going to happen next.
What was going to happen next?
What does this mean?
What does this twitch mean?
What does this weakness mean?
She was so worked up, you know,and she was saying and your
(34:45):
daughter, and pick out herclothes and enjoy her senior
photos and like, put it on yourmind, because if you put it on
(35:07):
your mind for a moment to enjoysomething really great in life,
it's not gonna make a difference.
Yeah, and you know, oh, Ireally felt for her, like I just
pray for her that she will havethat uh, understanding and be
(35:27):
able to move through this in ain a different way, you know I
think those words were so wise,laurie, and, and what I would
say is I would even take it astep further.
Dr. Richard Bedlack (35:37):
and sometimes people need a specific
strategy, right, yeah, yeah,Like it's kind of like exercise.
Like you walk into the gym, youknow you want to get in better
shape, but you're likeoverwhelmed at what you see.
In front of you there's athousand machines.
What do I do?
Yeah, you know you might need apersonal trainer to say, all
right, we're going to do 10 ofthese and we're going to build
up by 10%.
Each week you get a plan.
(35:58):
So that's getting back tosomething I hinted at earlier
about this hope boostingstrategy that I want to test.
So I believe there's two thingsthat we all can do better.
The first is what if, when aperson gets to clinic, instead
of saying, well, what are youcomplaining about today?
What's your chief complaint?
Well, what if we said tell metwo or three things you're
hopeful about today?
(36:18):
But what if we said tell me twoor three things you're hopeful
about today?
How?
Lorri Carey (36:21):
does that visit look different?
Dr. Richard Bedlack (36:22):
now, right, we can personalize the
multidisciplinary team approach.
And anybody like that personyou talked to, who's out in the
driveway drowning in thisanticipatory grief, thinking
about what?
If?
He said, why don't you tell metwo or three things you're
hopeful about today?
Let's see what we can do aboutmaking those things happen Right
.
And then the other is there'sthis really cool instrument that
(36:45):
was created by James CluesOgans, a professor at University
of Virginia.
You may have heard of him.
Yeah, his surviving family nowhas created something called the
Hummingbird Foundation and theyhave this intervention that he
called the ALS turbochargedliving scale, and what he said
was boy, it's really tough whenyou go to a clinic and you get
(37:06):
all these measurements andthey're all worse than they were
the time before.
Well, I get that, andunfortunately there's no way
around the measurements.
We need the measurements toknow what evidence-based
treatment options to offer.
We also need them to get payersto pay.
If we don't have anymeasurements, payers are not
going to pay for a powerwheelchair or a ventilator or a
(37:28):
feeding tube or all these otherthings that we think matter.
But what if, alongside thosemeasurements, you included a
measurement of something thatdoesn't have to get worse fact,
something that could actuallythrive in the presence of als,
and so his scale.
It looks a lot like the alsfunctional rating scale, but
(37:49):
it's it's all functions that arenot motor functions.
There's like a question aboutyour sense of humor and a
question about your compassionand your kindness and your
empathy and your advocacy forothers.
And and it scored the same wayas the ALSFRSR score.
So while that may be calmingdown as your motor function
deteriorates, this other scalecan be rising and you can put it
(38:11):
up next to that and say look atthis, look at all the parts of
you that are thriving in theface of this disease.
This does not have to defineyou.
Lorri Carey (38:21):
I love that.
What has he done with thatscale?
Or what has his family done?
Dr. Richard Bedlack (38:26):
So he put it out on his blog.
If you go and look at his blog,you can get people a link to it
.
But what I'm going to be doingwith Team Drea, andrea Peet's
foundation and the Hummingbirdfamily, we're going to study the
impact of these two things thatI just mentioned the question
about hope and the ALS, tls,turbocharged living scale.
What happens to people's hopescores when we incorporate those
(38:50):
into the visit?
Can we boost hope scores andour hope scores and ALS related
to all these other things thatpharmaceutical companies are
spending hundreds of millions ofdollars to try to slow down,
like your ALS, frsr slope andhow long you live?
I believe that thishope-boosting intervention is
going to be at least as powerfulas the medicines that we have
(39:13):
so far in this disease.
Lorri Carey (39:15):
Yeah, well, I hope that you'll come back and share
more about that.
I'm really really interested inthat.
So yeah, so you alreadymentioned als untangled.
For those that don't know whatthat is, can you talk a little
bit about your involvement andthe website?
(39:36):
You know kind of what's outthere for people to access.
Dr. Richard Bedlack (39:39):
Yeah, yeah.
So again, lori.
Another thing I learned earlyin my career that no one had
ever taught me is people withdiseases like ALS are going to
try things Like I don't know why.
I didn't realize this.
I guess because I had neverbeen impacted personally by one
of these diseases at that time,and so I recognized early in my
(40:01):
career wow, people are coming inand they got these bags of
stuff sitting next to them onthe exam table.
What is all this stuff?
And they're not being looked atby the nurse and the nurses are
only entering prescriptionmedications.
Well, these were all what I callalternative and off-label
treatments.
They were all vitamins andnutritional supplements and
herbs and things like that thatthey found online.
(40:22):
And I started to ask around tomy colleagues you know my more
senior colleagues, what arey'all doing about this?
And really it kind of fell intotwo groups.
One was well, I tell them it'sall a bunch of crap and they're
wasting their money, and I saidhow does that go?
That doesn't sound veryrespectful it also doesn't seem
to sound very accurate.
(40:42):
What if there is something inthat bag that helps the illness?
How do you know, unless youlook at all these things?
And then the other group waslike, well, I tell them, hey,
why not try anything?
I don't have the answer.
Well, that's not helpful either.
I mean, that's like tooautonomous.
What if we used our years oftraining, our scientific years
of training, to help peopleactually sift through these,
(41:03):
like to look at them, which onesare actually more plausible,
which ones are safer, and togive them some guidance to make
more informed decisions aboutwhat things they're going to
self-experiment with?
And so we created ALS,untangled to be that.
It's kind of like the oldX-Files TV show that I used to
love as a kid.
I set up a website and I fieldreports.
(41:25):
So somebody in Timbuktu says Isaw this website where he says
he's reversing everyone's ALS.
All right, we'll put it on thewebsite under the future review
section and we'll let thecommunity vote how many people
are interested in this.
And if it gets enough votes,I'll assign it to one of my team
members or me and we'll try tocontact the person running that
clinic.
We'll try to get permission tovisit that clinic.
(41:45):
We'll try to talk to peoplewho've been to that clinic and
get their medical records to seedid they actually have ALS?
Is anyone really getting betterthat's paying all this money to
get this treatment?
We'll talk about the cost.
We'll talk about the cost.
We'll talk about some of thebad things that could happen and
then at the end of the day, youknow we're not trying to stop
anyone from going there.
We just want people to have allthe information before they
(42:09):
decide to spend their time andmoney pursuing one of these
things.
And you know, even in this I'velearned some things.
I've learned about the peoplewho sell these products.
You know a lot of yourlisteners may cringe and think
these are all like snake oilsalesmen.
They're not actually.
Most of them are not.
Most of them are kind peoplethat believe they have something
.
They just don't have anyinterest or knowledge of how to
(42:30):
test it.
And these people actually dosome things really well that
mainstream doctors should payattention to.
These people are all veryoptimistic and hopeful.
These people are veryrespectful of patients' ideas,
almost to a fault Like.
I've watched some of them inaction.
I remember being in one clinicwhere they were doing chelation
(42:51):
and the patient said well, I'mnot really sure this is working,
you know, but I did readsomething about Lyme disease.
Oh, you want me to try sometreatment for Lyme disease?
Okay, we'll hook up another IV,we'll give you some Lyme
disease treatment.
Like, wait a second.
It's one thing to be respectful.
It's another thing to actuallylike talk about.
Is there any credibility behindthis idea?
Is there any science behind it?
Is there risks from all thisstuff that's being poured in?
(43:14):
But they were also veryresponsive and I think this is a
growing problem in medicine.
It's especially troubling inALS when a person says I reached
out to this center and I nevereven got an answer back.
Or I reached out to this doctoror this coordinator and it was
weeks before they got back to me.
Like this is a scary disease.
People need answers like in ashort period of time when they
(43:35):
have questions, especially ifit's about a new treatment or a
possible side effect.
They can't wait weeks or months.
They need an answer within aday or two of when they ask
their question.
And these people all do that.
So, we need to adapt thosequalities.
And then I think I learned somethings about the treatments.
Like I would have thought mostof this stuff is gonna be junk
(43:56):
and, unfortunately, a lot of itis junk.
Most of this stuff is going tobe junk and, unfortunately, a
lot of it is junk.
We actually created somethingcalled red flags based upon all
the junk that we discovered,that we debunked, and if there's
something out there that'sbrand new that we haven't
written about, take a look atall these red flags that we've
published on and see how manyred flags apply to this thing
that you're looking at.
Like, for example, is someonecharging you $100,000 to inject
(44:17):
you with something that'stotally experimental?
Well, that's unethical.
Is someone claiming that they'vegot the cure for 30 of the
world's worst diseases, whichhave nothing in common?
Really, what do you think?
The likelihood is?
That someone out there has anoffice in a strip mall next to a
Kentucky Fried Chicken andthey're curing 30 of the world's
worst diseases.
This would be like the mostfamous wealthy person in the
(44:38):
history of the world Does of theworld's worst diseases.
This would be like the mostfamous wealthy person in the
history of the world.
Does this person have anycredibility?
Do they have any relevanttraining?
Do they ever plan to presentthe results?
Are they even collecting datato find out if what they're
doing makes any difference?
If the answer to these thingsis no, no, no, then that's a lot
of red flags that might not beworth pursuing.
But we actually we did findsome things, laurie, that to me
(45:00):
warrant further study, and youmay have seen, I posted on
Instagram yesterday a paper thatI just published with some
colleagues, about the eight mostpromising products that ALS
Untangled has reviewed in all ofits 15 years of existence, and
next year that list might bedifferent.
But for people who want toself-experiment, that's a place
to start.
They can take that paper totheir doctor.
Lorri Carey (45:21):
They can say you think any of these things might
be something that you and Icould do together yeah, perfect,
and to my listeners, I will puta link, as I mentioned before,
uh, to als untangled, but it'salsuntangledcom, and if you go
(45:41):
to the home page it's veryintuitive.
It explains the method, andreviews are already done, and
then future reviews that you canalso submit things that you
want the team to look into aswell.
So, so I'll put that too.
And you mentioned yourInstagram.
I'll put that in the show notesas well.
(46:04):
Okay, good, all right.
So what do you think it's goingto take to cure ALS or to come
up with cures for ALS?
Dr. Richard Bedlack (46:23):
It's going to take a better understanding
of disease subtypes.
You know, I remember early inmy life seeing on TV yeah, we're
going to find a cure for cancer.
Well then it became obviouscancer is not one disease, we're
not going to find one cure forall cancer.
But we have cures now, and partof that is because we can
(46:43):
subtype cancer so well.
You know, we can biopsy it, wecan look at the characteristics
of the cells, we can look at thecharacteristics of the person's
genetics, we can do imaging andfind out you know where exactly
is the cancer in the body?
Has it spread?
So that allows anindividualized treatment
approach which has been wildlysuccessful in some forms of
(47:04):
cancer.
That used to be fatal and that'swhere we need to get in ALS.
And I would say we already havepretty strong proof that I'm
right about this.
Look at what happened with thedrug Tofersen.
The Tofersen is only for onesmall subset of people with ALS,
the kind that's caused bymutations in the SOD1 gene.
It's the kind of ALS weunderstand the best because
(47:26):
we've modeled that form of thedisease for decades.
And so it's not surprising,based upon our understanding of
it, that we took a drug where wethought we knew exactly what it
had to do.
We put it into a clinical trialand when we, when we follow
people now who are on this drugfor a long period of time, the
(47:46):
results are extraordinary.
It's a home run.
More than half of the peoplewho've been on this drug for two
years are stable and about 20percent are stronger compared to
where they were two years ago.
So it just proves the point.
When we understand a subtype,then we can make a dramatic
effect.
But I don't think there will beone treatment that cures all
(48:08):
ALS.
I think there will be cures forsubsets of ALS.
Lorri Carey (48:12):
Is there anything in particular that is happening
right now that you're reallyexcited about?
Dr. Richard Bedlack (48:21):
Yeah, I mean I think there's a lot more
trials underway for people withspecific genetic mutations.
You know, there's a product outthere in trials for people with
FUS mutations.
There is a product that's understudy for people with C9 or 72
mutations.
But even for people with nogenetic mutations there are
efforts to subtype it and goafter the specific cause of that
(48:44):
subtype.
So there's a group at the NIHand a group in Australia who
believe there could be aretrovirus called human
endogenous retrovirus K thatcauses some cases, and they're
going after that.
There's a man named Paul Coxwho believes there could be a
toxin that comes from blue-greenalgae called
beta-methylaminoalanine, andhe's going after that.
(49:06):
Here at Duke we're partneringwith a company in Australia
called Genius.
We're using a technologythey've invented which is still
experimental, but it's called apathway burden analysis.
We believe we can look at theentire weight of someone's
genome and get an idea of whichchemical pathway might be most
important in killing thatperson's motor neurons and we
(49:28):
can match them then to atreatment based upon this
classification.
And so we've got a trialunderway called the ROAR-DIGAP
trial that uses this technology.
But we're just at the beginningof all this for people who have
non-genetic ALS.
I think in the next five yearswe're going to have much more
subtypes and the reason I thinkthat is because we're employing
(49:51):
artificial intelligence now tothese large data sets.
So I would encourage listenerswho may be living with ALS get
involved in natural historystudies.
I know they're not as sexy asthe latest new clinical trial,
but they set the foundation,like AI is going to look at all
the information that's in thesenatural history data sets and
(50:12):
it's going to say how comesomebody does as well as Laurie
or Andrea Peet or these 62 ALSreversals?
What's different about thesefolks that allow them to do this
?
Well, it won't be one thing.
It might be 16, 20, 50different things that combine,
but AI can figure that out andonce we understand how that
(50:35):
connection works, we'veidentified a subtype and we
might be able to learn from thatsubtype, how to make everyone
do as well as you've done.
Lorri Carey (50:40):
Yeah, and I was going to ask you you know, team
slow progressor over here.
Do you have any thoughts on whydo some people live, you know,
15, 20, 25 years?
Dr. Richard Bedlack (50:54):
Yeah.
Lorri Carey (50:55):
Where others do not .
Dr. Richard Bedlack (50:57):
I think it's just as important a
question as the question aboutthe ALS reversals.
Lorri Carey (51:02):
Yeah.
Dr. Richard Bedlack (51:06):
And there's a lot more people like you who
are doing very well with thissuper slow progressors than
there are reversals and I thinkit's going to be multifactorial.
I think some of it's probablyin the genetics.
I don't think there's going tobe one gene, but it's probably a
combination of genes.
I think, some of it's in theattitude, I think some of it's
(51:36):
in the attitude, I think some ofit's in the gut microbiome.
We've actually got someresearch in the last few years
here at for manipulating the gutmicrobiome.
Now we don't expect that thesemanipulations would help someone
who's already doing well, likeyou, but we do think that these
manipulations could help anaverage to fast progressor to do
much better.
Lorri Carey (51:55):
And is there any like for me?
I know that I don't technicallyqualify for studies anymore
because, like you said, I'malready a slow progressor.
So I would throw off the curveand I would throw off the
results if I was in a study.
But is there a study of thosepeople that are slow progressors
(52:19):
?
Dr. Richard Bedlack (52:20):
Yep.
So I would say there is not onestudy.
There are studies available andagain, these would be the types
of things we talked about aminute ago natural history
studies.
So the National ALS Registry,the ALS-TDI ALS Research
Collaborative, and coming soonis something called All ALS,
which is funded from theNational Institute of Health,
(52:41):
where we're trying to geteverybody with ALS in our
clinics into the same study, andI think that these are really
huge in terms of setting thefoundation for the next few
years, because we have the powernow to identify these complex
differences in phenotype and topossibly explain why these are
happening, which I think willrapidly lead to better
(53:02):
treatments.
But that's only if people jointhese studies, like, ai is
useless if there's no data forit to analyze.
You got to have data.
You got to have big data for AI.
Lorri Carey (53:13):
Yeah, absolutely.
So perhaps we can get togetherwith those links to those
natural history studies and I'llput them in my show notes as
well.
So we're gonna have like athousand links now.
Oh my gosh, I can talk to youforever and we can get a lot
(53:35):
more information and resources.
So I hope that you'll come backnext year and we'll check in
and follow up on it.
Dr. Richard Bedlack (53:42):
I would love to.
Lorri Carey (53:43):
Yeah, I want to know before we kind of wrap up.
I want to know you talked about, you know, physicians being
stretched.
How do you do all that?
You do?
How do you see your patients?
Or your running ALS untangled?
How do you see your patients?
Are you running ALS and Tangon?
(54:04):
How do you?
Dr. Richard Bedlack (54:06):
do it all Well, because it's a passion for
me.
It's not.
I don't consider this my job.
I consider this my life.
This is my passion and, like Isaid, I'm lucky because I find
it so fascinating and becauseI've been able to involve so
many parts of myself that I lovein this.
So it doesn't feel to me likethere's a demarcation between my
(54:27):
work and the rest of my life.
Some people will listen to thisand say that's really unhealthy
.
Maybe it is, but that's, that's, for now, how I want to live my
life.
I I'm not going to say therearen't any down days.
I mentioned earlier.
There have been some days whenI've been so frustrated, usually
by the lack of urgency in ourin our medical and academic
(54:50):
systems, waiting for me to getthe next big hope boosting thing
off the ground and to have ittake two years for me to get
that off the ground.
It's incredibly frustrating,but there always seems to be
(55:11):
somebody out there that saves me.
And I would just say to yourlisteners I totally understand
that I need to be a hope giverfor you, but sometimes you need
to be a hope giver for me andyou would be surprised how often
we need that you know you wantone, one story I'll never forget
(55:33):
, which is another thing hangingon my wall over here.
I'll just grab it.
I had a really dark day a fewmonths ago and I was about to
leave here and go home and tellmy wife I think I'm done.
As I was walking out the door Isaw this big glitter covered
package sticking out of mymailbox.
(55:53):
I said, ok, what's this?
I'm back to my office.
I opened it up and it said readthe letter first.
So I open up this letter saysDear Dr Bedlike, you don't know
us, we've never met you, but welive in California.
My husband had ALS and I justwant to tell you how much your
YouTube videos, your work, yourpassion meant to us, like they
(56:16):
gave us so much hope and I thinkthat allowed us to do better
with the disease than we wouldhave done.
And I think that allowed us todo better with the disease than
we would have done.
And he said by the way, myhusband was a professional
magician and when he passed heleft in his will one of his
magician jackets that he wantedme to have.
So I got this magician jacketand I haven't quite figured out
(56:40):
all the secret compartments andthings in it yet.
But I left the office that daywith tears in my eyes just
realizing like I got to keepgoing.
There's somebody out there thatI've never even met that I've
influenced in this way.
You know, that's an example ofhow somebody gave me the hope
that I needed that day to keepgoing.
Lorri Carey (56:56):
Yeah, absolutely.
Oh my gosh, that's amazing.
Oh my gosh, that's amazing.
Oh, I love that.
Well, I just want to say thatyou are appreciated, I
appreciate you, and I know likeit's gotta be really, really
challenging to keep going.
(57:16):
I mean, I even know, like withthe podcast, you know it
heartbreaking.
You know, like my episode Ireleased today with Brady and
Brooklyn, 11 and 8, I mean I,you know, broke down a couple
times in that chat like theylost their dad and Brady talking
(57:37):
about I didn't have enough timewith him and like, oh, it's
heartbreaking.
And then, you know, as aphysician, it's even more
heartbreaking and frustrating.
So I understand.
Dr. Richard Bedlack (57:54):
Yeah, there is that aspect of it and it's
part of it's part of the reasonI mean, I have not really been
able to go to funerals.
In my career I build up a closerelationship with a lot of my
patients and families andsometimes I get invited and I
have to say no, because everytime I lose a patient I feel on
(58:15):
some level like I failed.
Lorri Carey (58:17):
And to go there.
Dr. Richard Bedlack (58:19):
you know, I mean it's.
It's probably not the rightmindset.
Yeah, for me that's just theboundary where I feel like I
would leave there with such anoverwhelming sense of failure
that I could not save thatperson and I've got to try to
focus on what I can do forpeople and not what I can't do.
Lorri Carey (58:37):
Yeah, yeah, I imagine All right.
Well, I know you listen in, soyou know.
I have one last question.
Dr. Richard Bedlack (58:45):
Yeah.
Lorri Carey (58:46):
So, Dr Penlack, what are you dying to tell us?
Dr. Richard Bedlack (58:52):
Laurie, I'm dying to tell you that people
can beat ALS, and I think theybeat it in two ways.
We talked about how people canbeat it physically.
That's extremely rare right now.
There's only 62 people that Iknow of in the whole history of
the world who beat ALSphysically, and I hope to change
that number someday.
(59:12):
But I want your listeners toknow that it's not at all
uncommon for people to beat thedisease spiritually by not
letting it change the best partsof them to beat the disease
spiritually by not letting itchange the best parts of them,
and so many of your guests arethat way.
Andrea, who keeps runningmarathons in spite of the fact
that it's harder.
Yeah, foundry School, hopkins,hop on a Cure.
Yeah, who keeps making thisbeautiful music, even though
(59:35):
it's harder?
You for putting this podcastout and highlighting all these
incredible people.
And so I just want I wantpeople to know that there's
different ways to beat thisdisease, but it is possible.
Lorri Carey (59:48):
Perfect.
Oh, thank you.
All right.
Well, we'll catch up again, I'msure.
So thank you for coming on.
Dr. Richard Bedlack (59:55):
You got it.
hello hey lori, how's it going?
Lorri Carey (00:07):
it's going good.
How are you?
Dr. Richard Bedlack (00:21):
You may have seen the story behind this
jacket, but this one's extraspecial.
Lorri Carey (00:25):
Which jacket is that one?
Dr. Richard Bedlack (00:31):
This is the one that was made by a designer
named Manuel Cuevas.
He was the designer for JohnnyCash, elvis.
Elton John, David Bowie,Salvador Dali, Frank Sinatra,
Lady
Lorri Carey (00:47):
.
Dr. Richard Bedlack (00:47):
Gaga Turns out he has an ALS connection.
Oh my gosh.
I got to meet him and talk tohim for a while and tell him
what I'm trying to do differentat Duke and how it starts with
what I put on when I go toclinic.
And he loved it and he made methis jacket.
He did some research on me andhe made it in my favorite color
and he embroidered it withsymbols of all these families
that have helped me in my questto end ALS oh my gosh, that's
(01:10):
his own family symbols on there.
And he said this jacket is ourstory and you make sure you tell
it as often as you can.
Lorri Carey (01:16):
So oh my gosh, I love it.
Dr. Richard Bedlack (01:19):
So what came first, the um, your desire
to connect with that designer,and then, after you were talking
to him, you found out he had aconnection absolutely so oh my
gosh, I've loved fashion since Iwas a kid and I just happened
to be at a at a meeting a coupleof years ago in nashville,
(01:40):
tennessee, and I had a freeafternoon and I said to my wife
I want to see if I can meetManuel Cuevas.
He's been one of my heroes infashion my whole life.
I mean he's 92 years old.
He started before I was bornand said I'm going to go out to
his studio see if he'll meetwith me.
Sure enough, he was verywelcoming and first question he
(02:03):
asked me is so tell me again,what band do you play in?
And I said, believe it or not,sir, I'm not a musician, I'm
actually a neurologist and Itake care of people with a rare
disease called ALS.
And his jaw just dropped.
He said did you know?
I lost my wife to that disease.
I said I had no idea like.
I've been reading about thepieces of clothing you make and
(02:25):
seeing them in movies and at theGrammys and things like that,
but no, I had, I had no idea ohmy god, I have chills.
Lorri Carey (02:33):
I thought you were gonna say, like you know, a
second cousin or a friend of afriend, or incredible.
I mean, I still get the chills.
Dr. Richard Bedlack (02:40):
it's like it's almost like we were meant
to meet and we've we've actually, I'm happy to say we've become
friends.
I've, you know, contacted himand his wife many times.
I got to go out and stay withthem at their house in rural
Tennessee.
A few months ago, my wife theyinvited my wife and I for a
weekend, so we got to go intowhat I call the adult Disney
(03:02):
world, which is his fashionstudio.
I've never seen so many amazingand crazy pieces as he's
working on.
Lorri Carey (03:09):
Wow, that's crazy.
Okay, so the last time we saweach other was in Atlanta at Hop
on and Care what?
Dr. Richard Bedlack (03:25):
a night.
Oh, oh, how special was thatit's one of the best nights I've
I've ever had in my life.
I mean it was yeah it wasalmost like a dream the people
that I got to interact with, thethings that I got to partake in
, you know, and then, on top ofall that, to get called up to
the stage to to get, you know,recognized for my work and you
(03:49):
know I still have it right herenext to my desk my prized
possessions.
I got one of my John DriscollHopkins Western shirts.
There's a couple of pieces ofclothing that I I care too much
about to wear, like I have thesein my office, because I look at
them and they remind me ofmoments.
That's one of them.
Lorri Carey (04:07):
Oh my gosh, I forgot that.
He gave you one of the shirtson his back.
Basically, he's such a nice guy, sure is and yeah, I had no
idea that you were going to bethat Hopinacure was going to
award you, you know, withfunding for your research.
So that made it extra specialas well.
(04:30):
So I can't believe that by theend of the year they will have
donated $3 million for ALSresearch.
So I'm so proud of them.
Dr. Richard Bedlack (04:48):
Yeah, they have they have an incredible um
platform yeah, you know music.
Is is universal zach brown band, of course is is beloved all
over the world yeah, but I mean,to take it to the next level,
that the whole family, theHopkins family, is so
charismatic and thoughtful, andI just love listening to what
(05:11):
they have to say because Ialways learn something from them
.
Lorri Carey (05:14):
Yeah, very, very brave family too.
So well, let's jump back alittle bit.
For those that aren't in ourALS community.
They might be wondering why didI start off by talking about
your clothes, and who is thisguy?
So why don't you, you know,just do a little introduction of
(05:37):
how you're known in the ALSspace?
Dr. Richard Bedlack (05:41):
Yeah, I'm Dr Rick Bedlak.
I'm a professor of neurologyhere at Duke and I started, and
still lead, the Duke ALS program.
And well, I guess it dependswho you ask in terms of how I'm
known.
But you know, if I can't be theguy who cures ALS, I want to be
known as the one who created alot of options and hope for
(06:03):
people living with this disease,and we're going to talk a lot
more about that hope word.
Yeah, as to me, as I look backover my career, which is now 24
years, I feel like that'sprobably something I've been
especially good at isunderstanding the importance of
(06:23):
hope and trying to become abetter hope giver, and I think
I'm pretty good at it.
I'm actually going to beputting out a movie in 2025.
There's been a lot of great ALSmovies, as you know, but this
one's a little different becauseit talks about what it's like
to be an ALS doctor, and it'sdefinitely not an easy job.
(06:45):
It's actually getting harder, Ithink, over time because of the
medical system that we have andhow it's changing, but I feel
like I've been able to staypositive and generate a lot of
hope for my colleagues, but alsofor the patients and families
who come to see me here at Duke.
Lorri Carey (07:02):
Yeah, I would say that as well.
And so we've been in the ALScommunity about the same time
you longer than me, but I've,you know, going on 21 years, and
then I've had ALS.
And I will say that if I'mtalking to someone about you,
I'm like, you know, dr Benlack,the guy with the really cool
(07:23):
suits and the guy that gives alot of hope.
So you're right on, and that'show you're known.
I know you've been focusing onALS for a long time.
How or what initially inspiredyou to focus on ALS?
Dr. Richard Bedlack (07:46):
Yeah, well, let me back up and you can edit
this if it's too long.
But I'll back up all the way tomy childhood.
There were two weird thingsabout me.
When were you born?
Two weird things about me froman early age.
One was the clothes.
You've already touched on that.
But from the day that my parentslet me pick out my own outfits
for school which I think was ateither Sears or JCPenney I liked
(08:09):
really loud, crazy combinationsbecause I felt like they were
almost a suit of armor to me.
They would allow me to protectmy positivity no matter what I
ran into.
And I started to notice howthey rubbed off on people around
me.
Like back then it was hey, youknow these bullies who used to
steal my lunch money.
Now they see this and they'relike look at this crazy kid, wow
(08:30):
, this guy, what an outfit.
And they would leave me alone.
So it worked two ways.
But the other weird thing aboutme was, before I even fully
understood what the brain was, Iwas captivated by what I would
later come to know as neurology.
Like one of my first memoriesis rolling my little brother
down this hill in our backyardand having him get up and kind
(08:52):
of stagger around and wonderingwhat's this?
And I rolled myself down thehill and I'd experienced that
spinning sensation.
And I'd run inside to my momand I'd say you know, mom, how
come, when we go down the hilllike this, we feel like we're
spinning.
Or I would see somebody out inpublic who shuffled when they
walked or their hands shook, youknow, when they wrote.
And I'd say, mom, you know whydoes this happen?
(09:13):
And you know, my parents werefantastic, they really loved us,
but they didn't have a lot ofeducation or a lot of money.
And so my mom would say writedown, and on Saturday I'll drop
you off at the library and youcan try to figure this out.
Oh my gosh.
I had this great local librarianwho would pull these books off
the shelves and we would sitthere and try to understand what
(09:35):
I was seeing.
And it always came back to thebrain, like what I was
fascinated by was alwaysconnected in some way to the
brain and it led me to likeprograms, eventually to a
neurology residency, and that'swhere I first came in contact
with a person with ALS and itjust captured everything that I
(09:55):
was fascinated by.
Since I was a kid.
I'd never heard of a story likethis where a disease could take
out one part of the body sospecifically, so quickly and for
no good reason, and I'd neverseen a collection of exam
findings like that in one person.
And I remember when myattending physician walked into
the room and said well, it'scalled ALS, we don't know why it
(10:17):
happens and there's nothing wecan do about it.
You just have to go home andget your affairs in order.
And I drove home that day and Isaid I think I found the
disease that I want to fight andI'm going to stay at this
institution and I'm going tochange the culture.
I'm going to build a programthat's going to give people
options and give people hope.
Lorri Carey (10:36):
Oh my gosh.
So this is, right off the bat,way more than your job, way more
than really your career, morethan your job, way more than
really your career.
I mean it's like your interest,your hobby, your passion, kind
of all into one right.
Dr. Richard Bedlack (10:52):
Well, I'm, in a way, blessed that I get to
wake up every day and I get towork on a problem that I'm still
absolutely fascinated by, and Iget to do it in a way that
incorporates who I am as aperson.
I don't have to change thethings that bring me joy.
I can incorporate those into mycareer and they make me even
(11:15):
better at what I'm trying to do.
So I feel really lucky to beable to do that.
Lorri Carey (11:20):
Yeah, so you're talking about like your first
encounter where you were.
You had already decided thatthat's not good enough.
I'm going to do something aboutthat in the future, but is
there anything that happened?
Anyone that you met orencountered that along the way
(11:40):
just kind of sealed the deal,you know, on your commitment to
ALS research as a life, as a youknow, a life project.
Dr. Richard Bedlack (11:51):
Well, there's been so many different
patients and families that havechanged the way that I think
about medicine, have changed theway that I think about ALS,
both in terms of a doctor and aresearcher.
There have been so manypatients and families that have
rescued me when I was on theedge of just quitting and doing
something else.
(12:12):
But if I had to pick one, thatreally just completely changed
the direction of my career.
You know, I started offtraveling around.
I had no ALS mentor here, so Iwas traveling around the country
and talking to the experts,watching them, you know, examine
patients, watching theirmultidisciplinary teams, reading
every article and book I couldget my hands on.
(12:35):
I was learning the science ofALS care what things are we
supposed to measure and what arewe supposed to offer at
different measurements?
And then one day probably Idon't know four or five years
into my career, I walked into anexam room and I was struck
immediately by three unusualthings.
One, here's the youngest personI've ever seen with what would
(12:56):
turn out to be ALS.
He's about 20 years old,sitting in the middle of the
room in a wheelchair.
Two, I've never seen this manypeople jammed into one room.
Probably at least 15 to 20people jammed in there could
hardly move.
And three, this is the wildestlooking bunch.
They look like they're on theirway to like a punk rock concert
.
They have mohawks and piercingsand tattoos.
(13:16):
Everybody's got tattoos.
And I'm talking to him, I'mexamining him, I'm explaining
you know what I can do and,unfortunately, what I can't do.
And when we came to the end ofmy explanation I said can I ask
y'all one question?
I couldn't help but noticethere are all these tattoos of
swallows.
Like I noticed, the patient hasa whole sleeve of swallows and
(13:40):
everybody else in the room hasat least one.
And he said yeah, I told you,als runs in my family.
My mom died of it when I wasreally young.
I didn't get to know her, butshe left me this book and on
every page of the book there wasa swallow.
She just drew a swallow.
I don't know why, but when Igot to be 16 and my dad said I
could get a tattoo, I got everyswallow from that book tattooed
(14:00):
on my arm to honor the memory ofmy mother.
And then, when I started to getsick, we kind of knew what it
was.
Everybody I knew got one ofthese swallows from my arm
tattooed somewhere on their body.
And this is to show oursolidarity.
We call ourselves the oftenawesome army and we're always
going to come here together andwe're going to keep this upbeat
(14:21):
and positive.
And I was like wow, this isdifferent, and they did.
You know, every single time hecame, as sick as he got, he was
surrounded by this often awesomearmy.
We laughed.
They told me these incrediblestories.
They made the series of YouTubevideos that's still out there,
called often awesome the series.
And you know when we, whenwe're coming to the end of his
(14:44):
journey, I said, man, I'velearned so much from this that I
didn't find in any book or seein anybody else's bedside
approach.
I don't ever want to forgetthis.
I want to be in your army.
I want to get one of thesetattoos.
I did a little research to makesure it didn't have some hidden
meaning that would get me fired.
It turns out it's a tattoo thatsailors used to get because
(15:07):
that's the first bird you seewhen land is approaching.
So for them it meant theyweren't lost at sea.
And I got it right on my wristhere because the last thing I
used to do before electronicmedical records is sign the
chart.
So it would pop out of thereand it would remind me.
Hey, in addition to all theevidence-based stuff, hope is
really important.
Not everyone has an oftenawesome army.
(15:29):
Sometimes that's got to be me.
So if I haven't already saidsomething hopeful.
I need to go back in there anddo that, so that has always been
part of my practice since I metthat young man and his family.
Lorri Carey (15:43):
And are you allowed to say his name?
Dr. Richard Bedlack (15:46):
I do not believe it or not.
Have official duke permissionto release his name?
Oh yeah if people go online andlook up often awesome this
series on youtube, you will findhis name so okay, often awesome
army often awesome army.
Lorri Carey (16:03):
Yes okay, great, all right, and I can put a link
in my show notes to that as well.
Yeah, to my listeners, I won'tput a link in the show notes
that you can find on facebookand the website, both at I'm
dying to tell you podcast, and Iknow I'll have several other
(16:23):
links there as well.
So, besides your awesomewardrobe and your incredible
outlook and the hope that yougive, has found 61 cases of ALS
reversals.
Dr. Richard Bedlack (16:54):
Yeah, 62 now.
Believe it or not, we justfound a new one a couple of
weeks ago.
We keep finding them.
Unfortunately, we hear about alot of people who are saying
they're having an ALS reversal,and most of those we are unable
to verify.
But from the beginning of time,it is no test we do.
There's no picture.
We take blood tests.
We do, biopsy we do.
(17:14):
It's a set of criteria.
So they all have the righthistory, the right exam, the
right EMG, the right testing formimics.
(17:34):
They all progressed to wherethey were disabled from weakness
and then they all recovered allor most of their lost motor
function.
This is a phenomenon that wasnot invented by me.
This has actually been aroundand reported in the medical
literature since the 1960s.
I only learned about itapproximately 15 years ago in
(17:56):
the midst of an ALS untangledreview, when I came in contact
with one of these people andjust about fell out of my chair
when I got their medical recordsand saw this was something I
had never heard of.
But I went back and realized,wow, these have been reported
but nobody's really paid anyattention to them, and so I'm
the first one who's trying toput them all in the same
(18:17):
database and figure out what'sdifferent about these folks.
How did they recover from ALS?
How do we make this happen moreoften about these folks?
Lorri Carey (18:25):
How did they recover from ALS.
How do we make this happen moreoften?
Yeah, before we talk about themagic question, you know the
common factors that they've allhad.
Why do you think that peopledocumented?
Dr. Richard Bedlack (18:44):
the reversals but did nothing more
with it.
Well, a couple of things.
I mean one I think that thesupposition was that these
people probably didn't have ALS.
You know, like that's the mostcommon thing I hear when I talk
about this is somebody willraise their hand and say, hey,
bedlock, if these people gotbetter than they never had ALS
in the first place?
Well, that is a possibleexplanation.
(19:07):
What I can tell you is today wediagnose ALS by checking
certain boxes, and they allchecked all those boxes.
Now, someday, if somebodydevelops a test that comes back
100% yes or no, I would love tosee all these people tested to
see if they have the same thingthat everybody else with more
(19:28):
typically progressive ALS has.
But until that day comes, noone can win that argument.
They have ALS by today'sdefinition.
There is nothing in anypublished definition of ALS that
says they got to do A, b, c, D,but oh, by the way, if they get
better, they don't have ALS.
That doesn't exist.
That's not listed in any of thepublished criteria for making
(19:50):
an ALS diagnosis.
I also think that doctors areincredibly stretched, and they
have been for a long time, moreso now than ever.
But if you go back and you readthese case reports, almost
every single one of them says,yeah, they recovered.
And I just said, well, I don'tknow what happened, but go have
a good life, you know?
And it's on to the next patient.
(20:11):
It takes an incrediblemotivation to actually add a
whole nother layer of research,a whole nother direction to what
you're going to work on.
Layer of research, a wholenother direction to what you're
going to work on without anyfunding.
(20:31):
Like when I first started this,nobody was interested in funding
this because most peoplethought it was never going to
lead anywhere and it might not,but I would say it has created a
lot of hope.
Just the mere acknowledgementthat this can happen it changes
the way I talk to people when Imake the diagnosis.
Talking about the research thatI do on these folks generates a
lot of hope that this ispossible.
Lorri Carey (20:49):
Yeah, and you know, with having ALS for 20 years, I
have talked to a lot of peoplethat have ALS and now, of course
, with the podcast, and I'mfinding even my guests, as I
interview them, are talkingabout hope and they refer to you
(21:11):
and they refer to.
There are some cases you knowthat have been documented, that
are true cases of ALS reversals,and those are awesome people
that I'm bringing on the podcastbecause they are very inspiring
and very optimistic aboutliving a life with ALS and part
(21:36):
of your work and part of thereversals you know is a reason
why so.
So that's interesting.
If someone is listening in andthey have ALS or their family
member has ALS, I guarantee whatis it?
Is it something they ate?
(21:58):
Is it something they do?
What is the commonality?
Dr. Richard Bedlack (22:16):
Yeah, lori, I would say so far, and I
haven't given up on trying tounderstand what's going on here,
but so far, the only thing thatI can see that all of them seem
to have in common is thatthey're all very positive people
.
Now, what I don't know is whichcame first, because maybe you
weren't a positive person, butsomebody said well, you got this
(22:38):
, you got two to three years tolive which I hate when people
say it, but they still do say itto people that way and then
they were proven wrong and theperson instead recovered and is
now living a normal lifespan.
That would probably change yourentire outlook on life.
You'd probably be a much morepositive and optimistic person
because of what happened.
(22:58):
So I can't say which came first, but from a scientific
standpoint, one thing that I'vediscovered fairly recently which
I think is fascinating is thatthere is a genetic abnormality
in these reversals.
It's not in all of them, butit's much more common in these
reversals than inethnicity-matched controls which
(23:20):
come from databases of peoplewith more typically progressive
ALS.
And this gene does somethingthat changes the brain levels of
a protein called IGF-BP7.
So this protein by itself hasnever before been talked about
or implicated in ALS in any way.
But this actually regulatesanother pathway which was of
(23:44):
great interest in ALS.
It's the insulin-like growthfactor 1 pathway, specifically
this protein that I foundIGF-BP7, it blocks the
interaction between the growthfactor and motor neurons.
So with less of this proteinyou can have a better
interaction, your motor neuronscan be more resistant to ALS and
you get a milder case and youcan recover from it.
(24:06):
So it's the first time there'sever been really a plausible
theory for how people mightrecover from ALS and it's a
testable theory.
And Now we did a very firstpreliminary test of it with a
group called ALS TDI and what weasked them is could you look at
the blood levels of thisprotein and tell us number one
(24:29):
is it different in people withALS and people without?
And the answer is yes, it is.
It's higher in people with ALSand in fact, in the literature,
that protein is higher in peoplewith lots of different
neurological diseases MS,dementia, suggesting that it
really is important.
Two could you tell us is theprotein different in people who
recover from ALS versus thosewho don't?
(24:50):
Well, we didn't find astatistically significant
difference.
Now, we only had 11 people withALS reversals participating in
that study.
That's a pretty small number tolook for a statistically
significant result.
We also realized that the bloodlevels of this protein may not
reflect what's going on in thebrain and spinal cord, and so
(25:11):
what I think we need to do nextis go after this, and I already
have an idea for how to knockthis protein down and I think we
need to try to knock it down inthe spinal fluid.
We need to measure it in thespinal fluid before and after we
start this treatment, andhopefully what we will see is
that people stop or recover fromALS.
But if we don't, the nextquestion is did we actually
(25:33):
knock down spinal fluid proteinlevels?
Because if we didn't, well, wegot to go back to the drawing
board and find a different wayto do that.
Lorri Carey (25:40):
So is this one of the studies that you're
currently doing, then this oneis not.
Dr. Richard Bedlack (25:49):
This is all pretty new, Okay, and we're
still sort of putting a protocoland a budget and funding
together and hopefully we'llopen that trial in 2025, a trial
targeting this IGF-BP7 proteinto see if knocking it down in
the spinal fluid really doeschange the course of a person's
ALS.
But to me it's pretty exciting.
(26:11):
I mean, it is 15 years worth ofwork.
Somebody could say, well, man,that's a lot of work to still
not know for sure why this ishappening.
But I would say it's prettycool that after 15 years we
actually do have a plausibletheory with some evidence and we
have an idea for how we canmanipulate a target out of these
ALS reversals.
Lorri Carey (26:30):
Absolutely.
And you still have those peoplethat you've identified.
And you know, the more peoplethat you identify, the more
options that you're going tohave to look at.
So I am not a scientist at all,but when you talked about
insulin growth factor one, Iwill tell you that I was in a
(26:51):
trial year two, so that musthave been 2005, 2006,.
So that must have been 2005,2006.
With insulin growth factor one,I was giving myself two shots a
day for two years and I know Iwas getting a drug because I
(27:13):
would have hypoglycemia reaction.
I was not getting a placebo,glycemia reaction, I was not
getting a placebo.
So, and you know, at that timeI mean I was, you know, still
pretty strong.
My um FEC was really, reallystrong, so at the time I thought
(27:34):
it had done something for me.
Does that have anything to dowith that?
Dr. Richard Bedlack (27:41):
Yeah, it's interesting Laurie.
Yeah.
So the reason for the trialthat you were in is because
people made some observationsway back then.
One of the observations wasthat when you look across the
spectrum of people with ALS,some of whom are very fast
progressing, some of whom arevery slow progressing, there's a
difference in how muchinsulin-like growth factor they
have floating around.
People that are doing reallywell have more of it.
(28:03):
So next they took insulin-likegrowth factor and they gave it
to the mouse model of ALS andthe model did much better.
So they said well, now it'stime for human trials.
And they actually did severalhuman trials and they concluded
from these trials well, there'snot really much of a signal here
.
This idea is dead.
Well, maybe not so fast, becausesomebody actually, after all
(28:25):
those trials were done, said doyou all know that when you give
IGF-1 under the skin, it doesn'tget into the brain?
Also, when you give it that way, it doesn't last very long, it
has a very short half life.
So I would say that therereally isn't a conclusion from
all those trials.
Like, you didn't manipulate thetarget in the right place for
(28:46):
the right amount of time.
Therefore, you can't say theidea was wrong and it's it's
gonna.
It's not going to be easy tomanipulate IGF-1 in the brain.
You know it's it's.
It's going to be prettycomplicated to figure out how to
do that.
But what if you didn't have tomanipulate the growth factor
itself, but just this protein,igf-bp7, that gets in the way of
(29:06):
the growth factor?
Maybe this is a completelydifferent way to come back to
the same idea, but a much moreplausible way to treat it.
Lorri Carey (29:14):
Yeah Well, thank you for sharing that.
I know that a lot of people areprobably knocking on your door
as far as traveling all over theworld to come see you and hope
that you have that magic answerbecause you have that
relationship with these uniquecases.
So I'm glad that you arefinding some glimmer of hope and
(29:39):
some direction in all the workthat you're doing.
So you talked about alreadyworking with patients and how
you are giving them hope and notonly the patients, but the
families when they come in.
What is some advice that yougive someone that you see on day
(30:06):
one?
Dr. Richard Bedlack (30:07):
Yeah, great question.
Yeah, I mean just taking a stepback and talking about that
importance of hope.
Yeah, so in the years since Isaw the Often Awesome Army and
their effect on that one patient, I've done so much reading
about hope and I've really cometo believe, laurie, that it
isn't just an emotion, it isn'teven just a coping strategy.
(30:29):
Hope is a treatment.
If you look across almost everydisease where this has ever
been studied and it's not beenstudied well in ALS, I'm going
to change that in 2025.
I got a hope boostingintervention I'm going to study.
But every disease cancer, stroke, spinal cord injury, dementia,
heart disease people who aremore hopeful, they do better
(30:53):
medically, they have a betterquality of life, they have fewer
symptoms, are less likely to behospitalized, they live longer
compared to people who are lesshopeful.
And it just blows my mind thatwe haven't thought about this in
the ALS community Like, wow,yes, we should continue to try
to develop traditional medicinesto slow the progression of ALS,
(31:14):
but if there are other ways topotentially slow progression and
improve quality and length oflife, why would we not consider
those?
And hope is one of those thingsthat, to me, we really need to
get more focused on in thiscommunity.
So the things that I do.
First, lori, it starts with me.
How can I be a hope booster ifI'm not positive and hopeful?
Lorri Carey (31:37):
Yeah.
Dr. Richard Bedlack (31:37):
So, like I was telling you before, I've got
to think to myself what makesme positive and hopeful.
The clothes are one thing, butthere's other stuff I got to
remind myself that I have in mylife.
It isn't just possessions, it'speople.
I've got the greatest supportsystem a fantastic spouse, a
wonderful father, a greatbrother, so many friends that
(31:58):
keep me upbeat and positive, andso you know that sets me off on
the right foot.
Then, when I get to clinic, Ihave to be very careful about
the words I choose.
You know, when you break thenews to somebody about a disease
, what do you say next?
Really, they leave with a verydifferent impression and maybe
(32:19):
that impression can't be changed.
I can't tell you how manypeople I see that have been told
these exact words you have ALS,you have two to three years to
live, go and get your affairs inorder.
That's just soul crushing tohear the disease presented that
way.
It's also inaccurate.
You can't look at a person onday one and know they have
exactly two to three years tolive and tell them that that's
(32:42):
now when they need to go gettheir affairs in order.
I mean what I tell people islook, you have this disease.
It's a tough one.
It can be disabling, it can belife shortening, but it's very
different in different people.
There are examples of peoplewho've had this disease for more
than 10 years and still have anincredible quality of life.
(33:03):
I know a young lady who's hadit for more than 10 years and
still competes in marathons.
Stephen Hawking had it for 50years and was still writing
books exploring the mysteries ofthe universe.
There are these 62 people whorecovered.
We don't know how you're goingto do with this.
Let's take it one day at a time.
Let's make your life the bestit can be today.
(33:24):
Let's try everything we canthink of to slow it down, and in
a few months, if things havechanged, we'll do it all over
again.
We'll rethink our approach andthis is just one tiny part of
you.
It does not have to define you.
There are so many parts of youthat ALS does not have to touch.
It doesn't have to touch yourspirituality, it doesn't have to
(33:45):
touch your sense of humor, yourkindness, your compassion.
Those are the things that thatmake us who we are, not the
strength of our muscles and ourarms and legs.
Lorri Carey (33:55):
It's all that other stuff and ALS doesn't have to
touch that.
I love that and I talk to a lotof people who are just diagnosed
.
I get connected in a lot ofdifferent ways and I was just
thinking about I always offer todo a Zoom call, you know, with
them and their family.
And I was on Zoom with a younglady with children and she was
(34:20):
in her car in the driveway.
She didn't want her family tohear.
She was on the phone and shewas just so engrossed in what
was going to happen next.
What was going to happen next?
What does this mean?
What does this twitch mean?
What does this weakness mean?
She was so worked up, you know,and she was saying and your
(34:45):
daughter, and pick out herclothes and enjoy her senior
photos and like, put it on yourmind, because if you put it on
(35:07):
your mind for a moment to enjoysomething really great in life,
it's not gonna make a difference.
Yeah, and you know, oh, Ireally felt for her, like I just
pray for her that she will havethat uh, understanding and be
(35:27):
able to move through this in ain a different way, you know I
think those words were so wise,laurie, and, and what I would
say is I would even take it astep further.
Dr. Richard Bedlack (35:37):
and sometimes people need a specific
strategy, right, yeah, yeah,Like it's kind of like exercise.
Like you walk into the gym, youknow you want to get in better
shape, but you're likeoverwhelmed at what you see.
In front of you there's athousand machines.
What do I do?
Yeah, you know you might need apersonal trainer to say, all
right, we're going to do 10 ofthese and we're going to build
up by 10%.
Each week you get a plan.
(35:58):
So that's getting back tosomething I hinted at earlier
about this hope boostingstrategy that I want to test.
So I believe there's two thingsthat we all can do better.
The first is what if, when aperson gets to clinic, instead
of saying, well, what are youcomplaining about today?
What's your chief complaint?
Well, what if we said tell metwo or three things you're
hopeful about today?
(36:18):
But what if we said tell me twoor three things you're hopeful
about today?
How?
Lorri Carey (36:21):
does that visit look different?
Dr. Richard Bedlack (36:22):
now, right, we can personalize the
multidisciplinary team approach.
And anybody like that personyou talked to, who's out in the
driveway drowning in thisanticipatory grief, thinking
about what?
If?
He said, why don't you tell metwo or three things you're
hopeful about today?
Let's see what we can do aboutmaking those things happen Right
.
And then the other is there'sthis really cool instrument that
(36:45):
was created by James CluesOgans, a professor at University
of Virginia.
You may have heard of him.
Yeah, his surviving family nowhas created something called the
Hummingbird Foundation and theyhave this intervention that he
called the ALS turbochargedliving scale, and what he said
was boy, it's really tough whenyou go to a clinic and you get
(37:06):
all these measurements andthey're all worse than they were
the time before.
Well, I get that, andunfortunately there's no way
around the measurements.
We need the measurements toknow what evidence-based
treatment options to offer.
We also need them to get payersto pay.
If we don't have anymeasurements, payers are not
going to pay for a powerwheelchair or a ventilator or a
(37:28):
feeding tube or all these otherthings that we think matter.
But what if, alongside thosemeasurements, you included a
measurement of something thatdoesn't have to get worse fact,
something that could actuallythrive in the presence of als,
and so his scale.
It looks a lot like the alsfunctional rating scale, but
(37:49):
it's it's all functions that arenot motor functions.
There's like a question aboutyour sense of humor and a
question about your compassionand your kindness and your
empathy and your advocacy forothers.
And and it scored the same wayas the ALSFRSR score.
So while that may be calmingdown as your motor function
deteriorates, this other scalecan be rising and you can put it
(38:11):
up next to that and say look atthis, look at all the parts of
you that are thriving in theface of this disease.
This does not have to defineyou.
Lorri Carey (38:21):
I love that.
What has he done with thatscale?
Or what has his family done?
Dr. Richard Bedlack (38:26):
So he put it out on his blog.
If you go and look at his blog,you can get people a link to it
.
But what I'm going to be doingwith Team Drea, andrea Peet's
foundation and the Hummingbirdfamily, we're going to study the
impact of these two things thatI just mentioned the question
about hope and the ALS, tls,turbocharged living scale.
What happens to people's hopescores when we incorporate those
(38:50):
into the visit?
Can we boost hope scores andour hope scores and ALS related
to all these other things thatpharmaceutical companies are
spending hundreds of millions ofdollars to try to slow down,
like your ALS, frsr slope andhow long you live?
I believe that thishope-boosting intervention is
going to be at least as powerfulas the medicines that we have
(39:13):
so far in this disease.
Lorri Carey (39:15):
Yeah, well, I hope that you'll come back and share
more about that.
I'm really really interested inthat.
So yeah, so you alreadymentioned als untangled.
For those that don't know whatthat is, can you talk a little
bit about your involvement andthe website?
(39:36):
You know kind of what's outthere for people to access.
Dr. Richard Bedlack (39:39):
Yeah, yeah.
So again, lori.
Another thing I learned earlyin my career that no one had
ever taught me is people withdiseases like ALS are going to
try things Like I don't know why.
I didn't realize this.
I guess because I had neverbeen impacted personally by one
of these diseases at that time,and so I recognized early in my
(40:01):
career wow, people are coming inand they got these bags of
stuff sitting next to them onthe exam table.
What is all this stuff?
And they're not being looked atby the nurse and the nurses are
only entering prescriptionmedications.
Well, these were all what I callalternative and off-label
treatments.
They were all vitamins andnutritional supplements and
herbs and things like that thatthey found online.
(40:22):
And I started to ask around tomy colleagues you know my more
senior colleagues, what arey'all doing about this?
And really it kind of fell intotwo groups.
One was well, I tell them it'sall a bunch of crap and they're
wasting their money, and I saidhow does that go?
That doesn't sound veryrespectful it also doesn't seem
to sound very accurate.
(40:42):
What if there is something inthat bag that helps the illness?
How do you know, unless youlook at all these things?
And then the other group waslike, well, I tell them, hey,
why not try anything?
I don't have the answer.
Well, that's not helpful either.
I mean, that's like tooautonomous.
What if we used our years oftraining, our scientific years
of training, to help peopleactually sift through these,
(41:03):
like to look at them, which onesare actually more plausible,
which ones are safer, and togive them some guidance to make
more informed decisions aboutwhat things they're going to
self-experiment with?
And so we created ALS,untangled to be that.
It's kind of like the oldX-Files TV show that I used to
love as a kid.
I set up a website and I fieldreports.
(41:25):
So somebody in Timbuktu says Isaw this website where he says
he's reversing everyone's ALS.
All right, we'll put it on thewebsite under the future review
section and we'll let thecommunity vote how many people
are interested in this.
And if it gets enough votes,I'll assign it to one of my team
members or me and we'll try tocontact the person running that
clinic.
We'll try to get permission tovisit that clinic.
(41:45):
We'll try to talk to peoplewho've been to that clinic and
get their medical records to seedid they actually have ALS?
Is anyone really getting betterthat's paying all this money to
get this treatment?
We'll talk about the cost.
We'll talk about the cost.
We'll talk about some of thebad things that could happen and
then at the end of the day, youknow we're not trying to stop
anyone from going there.
We just want people to have allthe information before they
(42:09):
decide to spend their time andmoney pursuing one of these
things.
And you know, even in this I'velearned some things.
I've learned about the peoplewho sell these products.
You know a lot of yourlisteners may cringe and think
these are all like snake oilsalesmen.
They're not actually.
Most of them are not.
Most of them are kind peoplethat believe they have something
.
They just don't have anyinterest or knowledge of how to
(42:30):
test it.
And these people actually dosome things really well that
mainstream doctors should payattention to.
These people are all veryoptimistic and hopeful.
These people are veryrespectful of patients' ideas,
almost to a fault Like.
I've watched some of them inaction.
I remember being in one clinicwhere they were doing chelation
(42:51):
and the patient said well, I'mnot really sure this is working,
you know, but I did readsomething about Lyme disease.
Oh, you want me to try sometreatment for Lyme disease?
Okay, we'll hook up another IV,we'll give you some Lyme
disease treatment.
Like, wait a second.
It's one thing to be respectful.
It's another thing to actuallylike talk about.
Is there any credibility behindthis idea?
Is there any science behind it?
Is there risks from all thisstuff that's being poured in?
(43:14):
But they were also veryresponsive and I think this is a
growing problem in medicine.
It's especially troubling inALS when a person says I reached
out to this center and I nevereven got an answer back.
Or I reached out to this doctoror this coordinator and it was
weeks before they got back to me.
Like this is a scary disease.
People need answers like in ashort period of time when they
(43:35):
have questions, especially ifit's about a new treatment or a
possible side effect.
They can't wait weeks or months.
They need an answer within aday or two of when they ask
their question.
And these people all do that.
So, we need to adapt thosequalities.
And then I think I learned somethings about the treatments.
Like I would have thought mostof this stuff is gonna be junk
(43:56):
and, unfortunately, a lot of itis junk.
Most of this stuff is going tobe junk and, unfortunately, a
lot of it is junk.
We actually created somethingcalled red flags based upon all
the junk that we discovered,that we debunked, and if there's
something out there that'sbrand new that we haven't
written about, take a look atall these red flags that we've
published on and see how manyred flags apply to this thing
that you're looking at.
Like, for example, is someonecharging you $100,000 to inject
(44:17):
you with something that'stotally experimental?
Well, that's unethical.
Is someone claiming that they'vegot the cure for 30 of the
world's worst diseases, whichhave nothing in common?
Really, what do you think?
The likelihood is?
That someone out there has anoffice in a strip mall next to a
Kentucky Fried Chicken andthey're curing 30 of the world's
worst diseases.
This would be like the mostfamous wealthy person in the
(44:38):
history of the world Does of theworld's worst diseases.
This would be like the mostfamous wealthy person in the
history of the world.
Does this person have anycredibility?
Do they have any relevanttraining?
Do they ever plan to presentthe results?
Are they even collecting datato find out if what they're
doing makes any difference?
If the answer to these thingsis no, no, no, then that's a lot
of red flags that might not beworth pursuing.
But we actually we did findsome things, laurie, that to me
(45:00):
warrant further study, and youmay have seen, I posted on
Instagram yesterday a paper thatI just published with some
colleagues, about the eight mostpromising products that ALS
Untangled has reviewed in all ofits 15 years of existence, and
next year that list might bedifferent.
But for people who want toself-experiment, that's a place
to start.
They can take that paper totheir doctor.
Lorri Carey (45:21):
They can say you think any of these things might
be something that you and Icould do together yeah, perfect,
and to my listeners, I will puta link, as I mentioned before,
uh, to als untangled, but it'salsuntangledcom, and if you go
(45:41):
to the home page it's veryintuitive.
It explains the method, andreviews are already done, and
then future reviews that you canalso submit things that you
want the team to look into aswell.
So, so I'll put that too.
And you mentioned yourInstagram.
I'll put that in the show notesas well.
(46:04):
Okay, good, all right.
So what do you think it's goingto take to cure ALS or to come
up with cures for ALS?
Dr. Richard Bedlack (46:23):
It's going to take a better understanding
of disease subtypes.
You know, I remember early inmy life seeing on TV yeah, we're
going to find a cure for cancer.
Well then it became obviouscancer is not one disease, we're
not going to find one cure forall cancer.
But we have cures now, and partof that is because we can
(46:43):
subtype cancer so well.
You know, we can biopsy it, wecan look at the characteristics
of the cells, we can look at thecharacteristics of the person's
genetics, we can do imaging andfind out you know where exactly
is the cancer in the body?
Has it spread?
So that allows anindividualized treatment
approach which has been wildlysuccessful in some forms of
(47:04):
cancer.
That used to be fatal and that'swhere we need to get in ALS.
And I would say we already havepretty strong proof that I'm
right about this.
Look at what happened with thedrug Tofersen.
The Tofersen is only for onesmall subset of people with ALS,
the kind that's caused bymutations in the SOD1 gene.
It's the kind of ALS weunderstand the best because
(47:26):
we've modeled that form of thedisease for decades.
And so it's not surprising,based upon our understanding of
it, that we took a drug where wethought we knew exactly what it
had to do.
We put it into a clinical trialand when we, when we follow
people now who are on this drugfor a long period of time, the
(47:46):
results are extraordinary.
It's a home run.
More than half of the peoplewho've been on this drug for two
years are stable and about 20percent are stronger compared to
where they were two years ago.
So it just proves the point.
When we understand a subtype,then we can make a dramatic
effect.
But I don't think there will beone treatment that cures all
(48:08):
ALS.
I think there will be cures forsubsets of ALS.
Lorri Carey (48:12):
Is there anything in particular that is happening
right now that you're reallyexcited about?
Dr. Richard Bedlack (48:21):
Yeah, I mean I think there's a lot more
trials underway for people withspecific genetic mutations.
You know, there's a product outthere in trials for people with
FUS mutations.
There is a product that's understudy for people with C9 or 72
mutations.
But even for people with nogenetic mutations there are
efforts to subtype it and goafter the specific cause of that
(48:44):
subtype.
So there's a group at the NIHand a group in Australia who
believe there could be aretrovirus called human
endogenous retrovirus K thatcauses some cases, and they're
going after that.
There's a man named Paul Coxwho believes there could be a
toxin that comes from blue-greenalgae called
beta-methylaminoalanine, andhe's going after that.
(49:06):
Here at Duke we're partneringwith a company in Australia
called Genius.
We're using a technologythey've invented which is still
experimental, but it's called apathway burden analysis.
We believe we can look at theentire weight of someone's
genome and get an idea of whichchemical pathway might be most
important in killing thatperson's motor neurons and we
(49:28):
can match them then to atreatment based upon this
classification.
And so we've got a trialunderway called the ROAR-DIGAP
trial that uses this technology.
But we're just at the beginningof all this for people who have
non-genetic ALS.
I think in the next five yearswe're going to have much more
subtypes and the reason I thinkthat is because we're employing
(49:51):
artificial intelligence now tothese large data sets.
So I would encourage listenerswho may be living with ALS get
involved in natural historystudies.
I know they're not as sexy asthe latest new clinical trial,
but they set the foundation,like AI is going to look at all
the information that's in thesenatural history data sets and
(50:12):
it's going to say how comesomebody does as well as Laurie
or Andrea Peet or these 62 ALSreversals?
What's different about thesefolks that allow them to do this
?
Well, it won't be one thing.
It might be 16, 20, 50different things that combine,
but AI can figure that out andonce we understand how that
(50:35):
connection works, we'veidentified a subtype and we
might be able to learn from thatsubtype, how to make everyone
do as well as you've done.
Lorri Carey (50:40):
Yeah, and I was going to ask you you know, team
slow progressor over here.
Do you have any thoughts on whydo some people live, you know,
15, 20, 25 years?
Dr. Richard Bedlack (50:54):
Yeah.
Lorri Carey (50:55):
Where others do not .
Dr. Richard Bedlack (50:57):
I think it's just as important a
question as the question aboutthe ALS reversals.
Lorri Carey (51:02):
Yeah.
Dr. Richard Bedlack (51:06):
And there's a lot more people like you who
are doing very well with thissuper slow progressors than
there are reversals and I thinkit's going to be multifactorial.
I think some of it's probablyin the genetics.
I don't think there's going tobe one gene, but it's probably a
combination of genes.
I think, some of it's in theattitude, I think some of it's
(51:36):
in the attitude, I think some ofit's in the gut microbiome.
We've actually got someresearch in the last few years
here at for manipulating the gutmicrobiome.
Now we don't expect that thesemanipulations would help someone
who's already doing well, likeyou, but we do think that these
manipulations could help anaverage to fast progressor to do
much better.
Lorri Carey (51:55):
And is there any like for me?
I know that I don't technicallyqualify for studies anymore
because, like you said, I'malready a slow progressor.
So I would throw off the curveand I would throw off the
results if I was in a study.
But is there a study of thosepeople that are slow progressors
(52:19):
?
Dr. Richard Bedlack (52:20):
Yep.
So I would say there is not onestudy.
There are studies available andagain, these would be the types
of things we talked about aminute ago natural history
studies.
So the National ALS Registry,the ALS-TDI ALS Research
Collaborative, and coming soonis something called All ALS,
which is funded from theNational Institute of Health,
(52:41):
where we're trying to geteverybody with ALS in our
clinics into the same study, andI think that these are really
huge in terms of setting thefoundation for the next few
years, because we have the powernow to identify these complex
differences in phenotype and topossibly explain why these are
happening, which I think willrapidly lead to better
(53:02):
treatments.
But that's only if people jointhese studies, like, ai is
useless if there's no data forit to analyze.
You got to have data.
You got to have big data for AI.
Lorri Carey (53:13):
Yeah, absolutely.
So perhaps we can get togetherwith those links to those
natural history studies and I'llput them in my show notes as
well.
So we're gonna have like athousand links now.
Oh my gosh, I can talk to youforever and we can get a lot
(53:35):
more information and resources.
So I hope that you'll come backnext year and we'll check in
and follow up on it.
Dr. Richard Bedlack (53:42):
I would love to.
Lorri Carey (53:43):
Yeah, I want to know before we kind of wrap up.
I want to know you talked about, you know, physicians being
stretched.
How do you do all that?
You do?
How do you see your patients?
Or your running ALS untangled?
How do you see your patients?
Are you running ALS and Tangon?
(54:04):
How do you?
Dr. Richard Bedlack (54:06):
do it all Well, because it's a passion for
me.
It's not.
I don't consider this my job.
I consider this my life.
This is my passion and, like Isaid, I'm lucky because I find
it so fascinating and becauseI've been able to involve so
many parts of myself that I lovein this.
So it doesn't feel to me likethere's a demarcation between my
(54:27):
work and the rest of my life.
Some people will listen to thisand say that's really unhealthy
.
Maybe it is, but that's, that's, for now, how I want to live my
life.
I I'm not going to say therearen't any down days.
I mentioned earlier.
There have been some days whenI've been so frustrated, usually
by the lack of urgency in ourin our medical and academic
(54:50):
systems, waiting for me to getthe next big hope boosting thing
off the ground and to have ittake two years for me to get
that off the ground.
It's incredibly frustrating,but there always seems to be
(55:11):
somebody out there that saves me.
And I would just say to yourlisteners I totally understand
that I need to be a hope giverfor you, but sometimes you need
to be a hope giver for me andyou would be surprised how often
we need that you know you wantone, one story I'll never forget
(55:33):
, which is another thing hangingon my wall over here.
I'll just grab it.
I had a really dark day a fewmonths ago and I was about to
leave here and go home and tellmy wife I think I'm done.
As I was walking out the door Isaw this big glitter covered
package sticking out of mymailbox.
(55:53):
I said, ok, what's this?
I'm back to my office.
I opened it up and it said readthe letter first.
So I open up this letter saysDear Dr Bedlike, you don't know
us, we've never met you, but welive in California.
My husband had ALS and I justwant to tell you how much your
YouTube videos, your work, yourpassion meant to us, like they
(56:16):
gave us so much hope and I thinkthat allowed us to do better
with the disease than we wouldhave done.
And I think that allowed us todo better with the disease than
we would have done.
And he said by the way, myhusband was a professional
magician and when he passed heleft in his will one of his
magician jackets that he wantedme to have.
So I got this magician jacketand I haven't quite figured out
(56:40):
all the secret compartments andthings in it yet.
But I left the office that daywith tears in my eyes just
realizing like I got to keepgoing.
There's somebody out there thatI've never even met that I've
influenced in this way.
You know, that's an example ofhow somebody gave me the hope
that I needed that day to keepgoing.
Lorri Carey (56:56):
Yeah, absolutely.
Oh my gosh, that's amazing.
Oh my gosh, that's amazing.
Oh, I love that.
Well, I just want to say thatyou are appreciated, I
appreciate you, and I know likeit's gotta be really, really
challenging to keep going.
(57:16):
I mean, I even know, like withthe podcast, you know it
heartbreaking.
You know, like my episode Ireleased today with Brady and
Brooklyn, 11 and 8, I mean I,you know, broke down a couple
times in that chat like theylost their dad and Brady talking
(57:37):
about I didn't have enough timewith him and like, oh, it's
heartbreaking.
And then, you know, as aphysician, it's even more
heartbreaking and frustrating.
So I understand.
Dr. Richard Bedlack (57:54):
Yeah, there is that aspect of it and it's
part of it's part of the reasonI mean, I have not really been
able to go to funerals.
In my career I build up a closerelationship with a lot of my
patients and families andsometimes I get invited and I
have to say no, because everytime I lose a patient I feel on
(58:15):
some level like I failed.
Lorri Carey (58:17):
And to go there.
Dr. Richard Bedlack (58:19):
you know, I mean it's.
It's probably not the rightmindset.
Yeah, for me that's just theboundary where I feel like I
would leave there with such anoverwhelming sense of failure
that I could not save thatperson and I've got to try to
focus on what I can do forpeople and not what I can't do.
Lorri Carey (58:37):
Yeah, yeah, I imagine All right.
Well, I know you listen in, soyou know.
I have one last question.
Dr. Richard Bedlack (58:45):
Yeah.
Lorri Carey (58:46):
So, Dr Penlack, what are you dying to tell us?
Dr. Richard Bedlack (58:52):
Laurie, I'm dying to tell you that people
can beat ALS, and I think theybeat it in two ways.
We talked about how people canbeat it physically.
That's extremely rare right now.
There's only 62 people that Iknow of in the whole history of
the world who beat ALSphysically, and I hope to change
that number someday.
(59:12):
But I want your listeners toknow that it's not at all
uncommon for people to beat thedisease spiritually by not
letting it change the best partsof them to beat the disease
spiritually by not letting itchange the best parts of them,
and so many of your guests arethat way.
Andrea, who keeps runningmarathons in spite of the fact
that it's harder.
Yeah, foundry School, hopkins,hop on a Cure.
Yeah, who keeps making thisbeautiful music, even though
(59:35):
it's harder?
You for putting this podcastout and highlighting all these
incredible people.
And so I just want I wantpeople to know that there's
different ways to beat thisdisease, but it is possible.
Lorri Carey (59:48):
Perfect.
Oh, thank you.
All right.
Well, we'll catch up again, I'msure.
So thank you for coming on.
Dr. Richard Bedlack (59:55):
You got it.
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