(light string music) ♪ - Our guest is Dr. Jerry Maguire, Chair of Psychiatry, Doc1 Health, professor at California University Science and Medicine.

Today's show will focus on the topic of stuttering.

There's currently clinical trials taking place.

Welcome, and thank you for joining us!

- Well, thank you very, very much.

- First talk to me about, the issues of stuttering and the millions in the United States living with this disorder.

And, is it fair to call it a disorder?

- It is.

Now there's some talk about is it a disorder; is it at a condition?

But it's a difference in the brain.

It sure is and it does impact, can impact one negatively on their social and occupational and academic function.

Yes.

- So, share the effect it has had on individuals that others or the public may not take into consideration.

And I'm looking for maybe examples here that you know of that-- - Right.

- what stuttering can mean to the individual that stutters.

- Right.

Well, thank you so much.

And maybe you could tell already that I'm passionate about this field as I'm a person who stutters myself, and it's in my family.

It's affected my family and my older brother was severely affected by this.

And, that stuttering is not just what you hear and what you observe.

It's what's behind that so much for the person.

The impact of what verbal communication has on the stigma of society.

We as people who stutter we know, unfortunately, there's still discrimination that we face.

Studies have shown that we're underemployed, often more unemployed for the work, for the level of education that we have.

And there's still discrimination in the fields, like having every job placement says verbal communication skills.

So, things are there with that.

So, it does impact us but, then, even the biology of stuttering makes us, unfortunately, more prone to anxiety.

We also believe maybe depression and unfortunately that affected my brother, and it can lead to impacts on quality of life.

And, I think unfortunately for some who really struggle, even on the quantity of life with it, as well.

So, this can be very impactful.

- So, I wanna talk a little bit on what you said and the one thing that I picked up was the underemployed.

- Right.

- So, you can have people with great ability, great genius minds, great talent, but because they can't get through the interview, is that where it is?

Or, what's the cause there for the underemployment?

- Got it.

So, it could be not getting the job that they are capable of doing because they can't get through the interview.

Or, not getting the promotion because "well, this person doesn't communicate well."

Or, I even hear it where they'll say, "well, lacks passion" in another word; "doesn't seem to assert him or herself" or-- because of the verbal communication.

So, we get misjudged unfortunately negatively, and we know so much so that communication, from my role as a psychiatrist, it's so much more about the empathy and the listening and the understanding.

There are many fluent people out there who are horrible communicators and there are excellent people, excellent communicators of those of us who stutter, 'cause there's so much more, I believe, to communication than just fluent speech.

- So, you've dedicated your life seeking effective treatments for stuttering.

I'm wondering if you'll share a little bit about the clinical trial: phase one, phase two.

Or, what's going on here in our Inland Empire region?

- Perfect.

Great, great question.

So, we're one of the leading sites.

We've been setting this forward.

I began at UC-Irvine then took my mission to UCR and now with Doc1 and California University of Science and Medicine.

We are really leading the way on developing novel biologic therapies for those of us who stutter.

And, going-- we've understood now some of the work that we've done over the years to understand that stuttering is a brain condition.

It's certain regions of the brain that's related to, like, the switch of the brain for timing, initiation of speech.

It's not consistent in everyone, but we believe that we know that one of the brain chemicals, dopamine, seems to be out of balance in many individuals.

And, we've used medicines off-label for-- say, for Tourette's disorder or bipolar that's shown to be effective in many people who stutter, not all.

But, not one of them has gone through the funding to get through an FD indication.

["fluency disorder"] But, now we have that.

Not "have" it; we're toward that, we hope.

We've got two trials, one that's just concluding the phase two.

It's sponsored but it's a work that we originally did during my time at UCR and that has been brought forward.

Now, it's been picked up by a company called MLX.

We learned this from the COVID vaccines.

You might have a good idea, but eventually to get through the funding, there's gonna be a pharma or a biotech company that brings that through.

And so, we learned that from the COVID vaccine.

This is phase two, we're finishing.

We have actually finished enrollment.

Many individuals from the Inland Empire region participated in that trial.

We finished enrollment.

We're analyzing that.

We're hopeful to have an answer of results here soon in the coming months.

And, that's a placebo control.

That involved about 68 subjects around the country on that and if that yields positive results with that, that is, if it works on the dopamine one receptor.

If that's positive, we'll go on with a larger phase three and a study.

And if that meets statistical significance, submit to the FDA and hopefully have an FDA-approved agent on the market.

- And, did you have early signs of anything yet, or people just sharing that it's good or bad?

Or, have you heard anything?

Or, where are you thinking?

- Great.

So, we did this while I was at UCR.

We did the first pilot study a few months, which actually published positive results.

That's published public information.

That was the preliminary study and then, that led to this phase two.

We're also gonna soon be starting a new study right here in the I.E.

of a compound that's a PDE 10 inhibitor; also works on the dopamine system.

We've received funding from a company in Switzerland, NOIMA, and that's now public and will be starting first, the validation study.

That's gonna begin hopefully even this weekend!

We'll be enrolling for that.

And then from there, a phase two trial of that compound and, hopefully, others coming.

- So, based on your age and mind, what are-- what have been the treatments?

What are current treatments for those that are just learning that they're stuttering, or are trying to help their issues?

What's currently available?

- Right.

Well great, great question!

What's available, you know, stuttering usually begins in childhood and then it can persist into adulthood.

So, what's most important is when a child begins to stutter, especially when there's a family history, get seen and evaluated by a good speech language pathologist who specializes in stuttering or fluency disorders.

Understand that.

And, we believe that early intervention with different forms of speech therapy can be effective in preventing that child into persisting into adulthood with the stuttering.

Then, other forms of speech therapy can be effective and even forms of psychotherapy, like cognitive behavioral therapies, as well; at least in dealing with the impact of the condition and the social anxiety that unfortunately, and even the depression, that can come with this condition.

And that's also then where in the older adolescents and we don't have those studies yet more, but the studies will begin like we did with the COVID vaccines: adults, and then maybe get into the adolescents, and just to see where we go.

But then, I really envision in the future, kind of a team where the psychiatrist or the neurologist or the primary care physician would work closely, say, with psychology and speech language pathology in this comprehensive care that we utilize for people with depression and anxiety.

We know that integrative care is really the way to go.

And so that's what I see, but for now speech language pathology, early intervention for the child when it begins.

- And, how early might we see signs of stuttering?

Would it be when they first speaking or-- - Yeah.

- What are early signs?

- Great, great point.

So, we normally see a peak when they can begin speaking, but definitely before, like, age eight.

We actually now know too that there are different causes, of how they may say this term, of stuttering.

Some may be a genetic cause; we don't know all the difference.

Some-- thanks to my colleagues in Sweden, we've worked on this.

Some could be an autoimmune cause; it's rare.

But, where the child may have had, say, an infection and say a strep throat or something, then it triggers, like, an antibody response to the brain.

So, that's actually now determined as-- it's a rare cause, but it can happen.

So, we are also learning that "one size does not fit all!"

That people might have different high blood pressure, different causes, and stuttering is gonna be the same way.

So, it's unique of what that therapy approach would be.

- Why are some able to speak without stuttering as an adult but they had stuttering issues as a child?

Clearly, if you were a stutterer yourself and you speak very well now, do you grow out of it?

Does a therapy-- - Great question!

- make the change?

- Right.

Well, I did not grow out of it.

I'm on medication right now.

Not the one I'm investigating, but something similar prescribed by a colleague of mine.

And, I did persist into adulthood.

I'm of that group that did not recover from childhood to adulthood.

But, we are learning that different brain-- that stuttering is a developmental condition.

And, a child's brain is developing.

And, especially, what we call the "white matter tracts," like the insulation on the nerves and the connections in that circuitry.

Some, we don't know-- (unclear audio) that we're beginning to work and it makes work of others and be able to predict, say, through brain imaging, what child may recover and what child may persist into adulthood.

One of the signs has been if there's a family history of persistence to adulthood but now we're even gonna look at it so likely what it is that those tracts are developing.

And to some, they don't fully develop and they-- like, what happened with me and my brother and others is this persistence to adulthood where others have this recovery, and we don't know what leads to that-- the brain connections.

Is it puberty?

Is it hormonal?

Who knows what it is?

And, there's a lot of mysteries of the brain that we don't fully understand.

- So, you touched on it briefly and with the signs that your brother stuttered, you stutter.

So, it sounds like there could be a genetic component and you touched on it briefly.

- Yeah.

- Is there anything more you can say about possible genetic component there?

- Oh yeah.

There's a strong genetic component.

Not for everyone.

There are cases where individuals develop that, that could be different causes there.

But yes, stuttering is strongly genetic.

Maybe more genetic than what we see, say, for schizophrenia or bipolar disorder, or other conditions of the brain.

We have done work, my colleagues, of identifying certain genes.

In fact, I'm working with a researcher at the National Institutes of Health who has a collaboration with us right here at CUSM and Doc1 on being able to understand the genes that we've picked up and the other works been done, and then putting that into an animal and be able to study.

It's interesting of what that may lead to, but it's not gonna be one gene all of stuttering.

It'll probably be different genetic causes - Right.

- and others that-- might be something else.

So, there are-- we've identified some candidate genes, and now we're studying what those effects might be in animals and eventually developing therapeutics around that and being able to help.

- Let me ask.

Is there a-- I don't know-- a point where maybe it could flare up because of anxiety, - Right.

- or stress that maybe in a given situation a person could have been doing well yesterday, but stress today, and the stuttering flares up?

Could that be a thing?

- You hit the nail on the head on that one!

Yes, it does.

Stress and anxiety does make stuttering worse and stuttering makes anxiety worse.

So, they go on each other but there's also-- we don't understand why there are flares.

And, we see flares of waxing and waning, say for Tourette's disorder, which is also a similar region of the brain.

And, interestingly, it seems to respond similar medications.

Could this be something with the stress hormones or others?

Could it be something with, say, an autoimmune?

Why is it that we see-- we do have fluctuations and different neurotransmitters.

We know we can change that.

Some good work and one of my colleagues has looked at sleep.

We know that there's likely a disruption in sleep for those of us who stutter.

Anecdotally, many of us say, "If I don't have a good night's sleep, "my speech is no good the next day."

So-- and, but as also the person who stutters, we will feel like "today's a good day".

Or, "today is just..." (snap-snap-snap) so, "not my day."

- Mm hm.

- So, we have to really, that would help us unravel that mystery.

But what's also interesting, what could be frustrating for us, it's not just that good or bad day.

You're probably gonna ask this: "why is it that 98% of us are fluent when we sing?"

Mel Tillis.

- Yeah, that's what I was gonna say.

Mel Tillis is - Yeah.

- a perfect example.

Or, even actors like James Earl Jones or whatever.

- Right.

- That and I think Henry Winkler was a stutterer, as well.

- Oh, yeah.

- And so how actors, when they need to perform are able to do it.

Mel Tillis was able to sing - Yeah.

- with no stuttering.

And yet, the minute he stopped - Yeah.

- singing, the stuttering would reappear.

- Right.

And, Mel is not unique.

He was not unique.

98% of us or even more so with the developmental form, we're fluent when we sing, or we speak to a rhythm.

With James Earl Jones, I believe-- I never met him-- but it's almost like he's disguising his voice.

Like we disguise like, "This is CNN."

(imitates) - when he goes-- right!

- Yes.

- Right.

- And, he's-- right!

And I think the actors will say that.

Like for instance, when I'm lecturing, I'm pacing on stage 'cause if I get my motor system going, I'm a little better.

And so, I think-- and that was almost like a sing-song, sort of pattern for them.

And, we do know there's different tracks of our speech in the brain and the natural spontaneous speech, I'd say with the spontaneous speech, such as I'm doing now, goes through that basal ganglia region, which is what-- where, it's-- the timing's off, for us.

And whether through medications that we're doing either with other forms of therapy might work too where we can modulate that, improve that.

However, we bypass it.

It's intact for those of us who stutter.

If we have that rhythmic input, we can bypass the natural timer in speech and just sync normally.

- I'm hearing a lot of similarities with-- that I'm comparing to autism with the sleep, - Right.

- with the things firing, with the brain.

So, a lot of similarities.

And also when I was reading the material, I could see some similarities there.

I wanna ask you about the medication - Sure.

- that you are hoping to try or you've tried on a few people, - Right.

- that isn't made for stuttering.

That's not its purpose, but it's probably like an off-white, or off-label.

Can you share, - Yeah.

do you know what I'm talking about?

- Yeah.

There's a lot of those on the market that we've actually tested, not in huge studies, but a use for Tourette's disorder, bipolar disorder, depression.

Now, we are-- the agents that we're doing now are being specifically tested and designed for stuttering.

The new ones that we're doing, those studies that are going through the FDA trials.

But, yeah!

We have published data of agents that can be used for Tourette's disorder.

We publish on these agents.

And that's where a clinician, a physician can decide with that patient who makes an informed choice of the risk and benefits.

Not FDA approved for stuttering.

There is evidence to support it, but that would be an off-label use.

Yeah.

So, there are medicines there.

And now we're developing agents that being developed specifically for stuttering and are going through that FDA process with the goal of actually having an indication specifically for stuttering.

- And, are the medications only for adolescents and adults or is for the young ones, too?

'Cause, - Yeah.

- let's face it.

Stuttering is hard.

- Yeah.

- I'm not speaking for you, but - Yes.

- middle school would be a horrible time to get through that.

It's tough enough getting through middle school and high school.

So, having those issues would seem to compound life.

So, are medications only for adults or what's the prognosis there?

- It's a great question and you really speak to the impact of stuttering on the adolescent and the child and the impact.

That's why I said, don't delay therapy.

Don't necessarily wait.

So, our new medication we're testing, first, in adults and if shown to be safe and effective, they're-- yeah, we're gonna go to the adolescents.

Right?

And then, if safe and effective, do we consider going into younger children?

For instance, one of the agents that we use off-label is approved in Tourette's disorder as young as kids, age six.

So, we have to maybe consider that if we show the safety in adults and the efficacy and then in adolescents, yeah, we would go 'cause it is so impactful that also there to work with different forms of psychotherapy and speech therapy in a comprehensive treatment approach.

It will be there.

- So, I was gonna ask about the therapy and therapy tends to be speech therapy that students either get in school or in private practice, the speech therapy.

And, what does that look like for stuttering?

- Great.

So, there are different forms of that speech therapy.

Unfortunately, many of them are not covered by health insurance plans.

We aren't viewed as a parity diagnosis, but we're working on that because that's where depression was, and anxiety, and we understand that now.

There are different approaches to speech therapy.

One may take, like, a fluency shape and actually work on the words and really work at the fluency, others, but we're gonna work on the quality of life with that child; how to deal with the societal impact of that stuttering.

But, also shown to be effective, as well, is different cognitive behavioral therapies, focusing on the anticipation, the social anxiety and others.

That's why I think-- and that's where medications can also be utilized to help that social anxiety, but stuttering's not an anxiety, - No.

- disorder in itself.

It's a motor disorder.

It's a motor coordination disorder of which anxiety can make worse and we people who stutter tend to have a higher basal risk of that, as well.

- As I mentioned, there are many famous people that have been diagnosed, or are stutterers, or have outgrown stuttering.

Why is this issue so important to you?

Obviously family and yourself, but tell me why you took this by the horn and decided - Yeah.

- to run with this study or this issue?

- Well, this is a mission in my life.

But, because I saw it that-- how was it that we're understanding other conditions of the brain, but we were largely ignoring stuttering?

There's so much stigma and myths.

Even my first presentation at a stuttering conference, not with MDs.

I'm of the few MDs around the world that's working on stuttering.

Hopefully, that will change and we'll all work as a team.

But it was believed that I was breastfed too long or that it was brought on by my parents that I learned-- I was getting positive reinforcement for being a child who stutters.

I said, "well, those were myths we had about schizophrenia and depression."

I wanted to work to dispel that.

So, we're the first to publish about MG studies called PET Imaging.

[positron emission tomography] And, showing there's a deep difference in the brain.

And, I firmly believe that when we understand the science of our brains as persons who stutter, the world understands that, the stigma will lessen and go away.

People will say, "yeah, this person's just anxious.

They can't do their job."

They don't get it."

- Yeah.

Hey, it's different.

You can't get on someone if they're battling depression now.

Right?

15 years ago, they could.

They would just say this person's poorly motivated.

- Right.

- The world has to understand.

If we understand our brain and what's unique with us, then society will understand and hopefully have more acceptance within the individual and society; stigma and discrimination go down.

So, yes.

It's a cause.

It's a mission.

And my dad's 93 as a psychiatrist; he's still going strong.

And, I hope to follow that same path.

- Tell me, what is the Speak Freely study?

- OK, that's-- that's an agent that we're just completed enrollment.

That's a phase two agent.

That's now sponsored by MLX, which is the biotech company that supported that.

That's work that we've originally began at UCR during my time there, and now it's a multicenter study.

And, that is concluded enrollment and we're gonna analyze that data here very soon.

And, that's that study.

- I see.

- And if that's positive, then we go to a phase three.

If it's negative, ehhh?

Go on to the next one!

Right?

- What is your greatest takeaway?

What do you want the public to know about stuttering a little bit more clearly?

- Great, great question.

We people who stutter have ability.

Judge us on our ability, not our disability.

And, understand that we have a brain difference and that--- embrace acceptance and that acceptance and acceptance of treatment and therapy are not mutually exclusive.

That there is therapy there and we're working toward it, and we want the world to understand and accept it.

We accept ourselves; the world accepts us.

- And for those that are listening and watching this interview, where can they go for more support, more information?

Where do you recommend?

- Great.

I recommend they check us through various groups like the World Stuttering Network, which is a fantastic world global stuttering group, as well as Friends, which is a fantastic-- Friends Who Stutter, which is a great organization that really targets the youth who stutter, and different support groups, and levels of information that can be spread there as well, too.

And, keep in touch with us at Doc1 and CUSM 'cause we're your resource right here, as well.

- And, are those-- World Stuttering Network and Friends Who Stutter, is that located locally here in the Inland Empire, or is that a national thing?

How-- - Right.

- so is it online?

- Oh, it is online.

Yeah.

Friends Who Stutter; there's also Stuttering Foundation.

There's British Stammering, which is now STAMMA; Canadian Stuttering, National Stuttering Association.

And, there's International Stuttering Association.

World Stuttering Network is virtual, and based in Florida.

And, Friends really based in Colorado.

But, they'll have support groups and they also have virtual support groups and others.

And, there's a lot of good support out there and seek that out.

- What's the first thing you tell a parent when they come to you that they're trying to help their kid?

Is you tell them to get therapy?

Or, what's the first thing - Yeah.

- you tell a mom or dad that's desperate to help their child?

- Great.

Depends on the age.

So at the first-- as I probably said, I work with a good speech therapist.

University of Redlands out here is a great program under Dr. Lisa LaSalle.

And in Orange County, where we also work, Doc1 is also based.

I work closely with Loryn McGill at the OC Stuttering Center.

So, go to a really good speech therapist for that early time.

Be educated, understand-- join the various different support groups and gain that understanding.

You're not alone.

Your child can accomplish great things.

And there's help out there, help and support.

And, like, at this point I wouldn't say we can cure stuttering, but you know, I-- to me "cure" is not a four letter word and doctors don't cure much of anything.

We "treat" things, right?

We "treat" diabetes.

We "treat" hypertension.

We "treat" depression.

Stuttering is no different.

We're gonna strive for that.

We're gonna strive to always help and be there for support, develop better therapies and advocacy as well, too.

And, understand that your child can accomplish great things.

We're just gonna help that person along the way.

Help them understand themselves.

Don't feel negatively on themselves.

- So, thank you!

- Dr. Jerry Maguire, thank you so much - Thank you.

- for your time, and your knowledge and good luck with those trials.

I hope they prove positive.

- Thank you.

And, I wanna thank you for giving a voice to those of us who stutter.

Thank you very much.

I appreciate it.

- It's my pleasure!

- [Lillian] This program was originally produced for 91.9 KVCR Radio.

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