Episode 199:  The Airway Revolution: Add Your Voice!

Hi and welcome to episode 199 of the Untethered Podcast. Today we have Sydney and Victor Avis joining us.

Sydney is a 30 year old graduate.

Of the University of Colorado at Boulder. A lifetime athlete, Sydney was diagnosed as a child with asthma and battled through sporting events in life with grit and an inhaler. Fatigue and exhaustion were her constant companions and she was unaware until 2016 that there might be a solution. After multiple courses of orthodontic treatment which never addressed her airway, Sydney sought answers through a healthy lifestyle and self education. Still battling anxiety, fatigue and metabolic issues, Sydney and her father brought together a team of airway experts to solve her problem. This is a multidisciplinary approach the Airway Revolution foundation hopes to inspire everywhere. In 2017, Sydney agreed with her father that they might help others by prospectively filming her journey. Dr. Victor Avis, a graduate of Duke University and Georgetown University Dental School, is a third generation practitioner of general dentistry in Staten Island, New York. Married and the father of three daughters, Victor has prioritized family and excellence in dentistry throughout his adult life. On his journey towards excellence, Victor developed a vision for his practice, the Avis Alternative, which would help and inspire his patients along their personal journey to health and wellness. During his career, Dr. Avis became keenly aware of the connection between dental health and overall well being. He's enjoyed a significant intra office collaboration with preventative a cardiology specialist, Dr. Gina Pritchard, and has embraced a critically important role that dentistry plays in the prevention of heart attack, stroke and diabetes. Broadening his training, Dr. Avis returned to school in 2008 to learn orthodontics. While learning conventional orthodontic paradigms and techniques, he had questions which led to his studying with the out of the box thinkers in dentistry, orthodontics, myofunctional therapy, ENT and a multitude of other medical and dental disciplines. Understanding the airway, breathing and sleep connection, Dr. Avis finally discerned the root cause of Sydney's health challenges. Those health challenges had come to include anxiety, hypothyroidism, learning and cognitive issues, mood swings, fatigue and exhaustion. Dr. Avis realized Sydney's obstructive airway disorders were not outwardly obvious or recognizable. By telling Sydney's story, many people who are suffering silently or being undiagnosed or misdiagnosed could be helped. Dr. Avis, Sidney and film producers and director Orly and Ed Weissman are putting together an airway documentary that you'll learn about in this episode, Dr. Avis, a leader and participant on numerous not for profit boards and child of philanthropic minded family decided that he, Sydney and their talented producer and director could do more. Thus, the vision and mission for the Airway Revolution foundation was born. Quick Disclaimer all information, content and material of this podcast are the opinions of the speakers and is for the informational purpose only and not intended to serve as a substitute for the consultation, diagnosis and or medical treatment of a qualified healthcare provider. Welcome to the Untethered Podcast. I am your host, Hallie Balkan. I'm a certified orofacial myologist, feeding specialist and mentor. This podcast is all about getting your questions answered and collaborating with colleagues to bring you the most up to date.

Information in the orofacial myofunctional therapy, tethered.

Oral tissue and airway space.

I challenge you to keep an open mind and join my mission to get.

This information out to the masses.

Let's get started. Victor and Sydney, welcome to the Untethered Podcast.

Thanks Hallie.

Happy to be here, Hallie.

So I know that you wanna start this episode with sharing a video and we will do. We're gonna do that and then we're gonna jump into our conversation. So for anybo is not watching on YouTube, you can listen. If anybody wants to see the video, they'll be able to see us on YouTube and I know we can. We can also link it to your original YouTube video as well. If they just want to. They want the snippet. So I'm going to go ahead and play that.

As long as I can remember.

I didn't.

I didn't feel like myself. I was exhausted all the time.

Sorry.

Okay.

This is the 19 to 29 year old. They are suffering. They are suffering distinctly from major health issues, from airway and sleep disorders.

I don't have a moment in time where I started feeling terrible. We had to do something about it.

I felt like this my whole life.

I had nothing to compare it to. This was just what life was.

I was tired, I was lethargic, I was cranky.

But I. I felt like there was more inside me that I just could not present to the world. I couldn't release it because it was just stuck.

We talk about sleep, we talk about airway, but no one has been able to put all of this together or close the loop on what is needed.

We know an obstructed airway can lead to cardiovascular disease, can lead to issues with cognition, job performance, overall happiness, quality of life.

And when you're looking at the airway, it is a highly complex problem. I don't Think there's a single person that has the arms around it to the extent that you can say I have the answers.

And for the record, my numbers did not scream she has an airway disorder, that there's something wrong with her continuously.

I was told it's mild.

If anything she should be fine.

It's not just overweight 50 year old, 50 old men, right? It affects everybody.

There are a lot of other populations, like young, thin women who also have these issues, but present very differently.

I know of many people who have been in a similar situation to Sydney who have been seeking different professionals and have not obtained answers.

I think this condition is epidemic.

You can imagine almost everyone these days need braces, right? The reason why you need braces is because your jaws are too small to hold all your teeth. There's evidence starting about 15 years ago.

That the severity of cardiac disease is.

Worsened in those people with, with inadequate airways.

This is a huge issue for so many people. They don't even know what to look for. They don't even know that this exists.

It's like the diabetes that you don't see the numbers that you're bypassing. It's like the harmful hypertension that you're not feeling, but it could cause your stroke or heart attack coming up. So it does cause stroke or heart attack.

Also struggling, working so hard and never getting the grades and just being told to work harder and believing that I was stupid my entire life, you know, so even physically, what it can do to a person, but mentally, emotionally, it's confidence, you know, it's a huge.

It.

Is a huge issue for so many people.

So there's millions of Sydneys out there. Millions. That's why we're doing this piece, right? That's why we're telling the story. Because Sydney is not alone.

You look at skulls before the industrial revolution. They all have straight teeth, erupted wisdom teeth, high cheekbones, everything's forward, flat palates, huge bony airways.

They didn't have grains, they didn't have carbs. They exercised a lot. There were no pollutants. They ate hard foods. Their jaws were huge. They had room for 5 or 6 millimeters behind their wisdom teeth. Today, me, my kids, our jaws are shrinking. Every generation the jaws get a little smaller and the face gets smushed in. The sinuses get smaller, the nose gets smaller, the jaw gets pushed back and what happens that closes the airway.

Even in utero, the jaws look like we've treated them with, you know, non retractive orthodontofacial orthopedics.

Every single one of these forms that we have from these archaeological sites, none.

Of them have malocclusion, none of them.

I mean, they have perfectly intermeshed teeth.

And that means that their jaws and their faces were really well developed and that means their airway was well developed. Sid had traditional orthodox, was someone who's doing their best, taught to do what they were taught to do. But what does she have straight teeth and a face that's down and back.

When I was in medical school, teachers there would tell us, listen, we have all these great books and resources for you guys, but half of what's in these books is going to be outdated within five years. I learned nothing about this, this in medical school. I learned nothing about it in dental school. You know, we can go on for days talking about these, these issues.

Even when I was learning in graduate school, I did not learn anything about the way that the face grows in a dynamic way in relation to the function of our tongue and teeth and jaw and all of the articulators and then how that affects airway. I am standing here 140 years later.

And I'm in complete disbelief that as a medical community we really are just.

Truly getting around to this now.

I started to realize that this is unique opportunity for our college to get.

Involved in having Columbia University behind. What we are doing is going to deliver a very impactful message and hopefully a life changing opportunity for many people like Sydney.

Airway for us is just the next thing, the next frontier to actually move into what we're doing educationally, we're doing research wise and what we really need to bring to the community that comes in here. They have agreed to transform education in both the dental school and medical school, meaning teach airway as a core part of their curriculum.

I worked with the dean of the medical school in bringing us to the point where we are today. And he told me, christian, I would like you to start it. I know that you will bring the people to the table that advance the.

Science and we're going to establish the premier center for collaborative treatment of airway disorders at that university.

The incredible vision that Dean Solar has to really open his arms and open the doors to do something that no one has ever done, will make Colombia not only the most desirable place to be in, but the place that sets the standards for new ways to educate, new ways to teach, new ways to learn.

We need to educate by trying to bring in the medical community together with the dental community.

The public is looking for a solution. They realize that people haven't had the answers. And now to get someone in academia to understand that and realize that the public is clamoring for this.

Well, hello.

Columbia have made huge investments in precision medicine and has made equally strong investments in data science. These are frontiers that allow us to. To decipher complexity. You were never able to do this before.

He understands that you need data and you need lots of data, and you need to analyze them very carefully because most of the work that that is being quoted loosely is simply not based on any large amount of data.

One of the difficult aspects of this whole topic is that there's so little research about it, and the medical field is very wary of suggesting something that doesn't have any actual randomized, controlled studies.

We would like to listen to anything that is out there, look to see.

What the community orthodontist, pediatric dentists, general dentists know about obstructive sleep apnea and the airway and what they do about.

It, not just what is in the confines of a university.

And that will provide us with information that may be able to put us in a direction of what we need to do educationally for teaching, not just those who are still in school, but those who've been out of school for a while.

There are a lot of professionals out there that still have seek more education. There needs to be a real meeting of the minds between dentistry and medicine.

Bridging the gap, both medicine and dentistry, and creating an environment that somewhere touches this side and touches this side, but works cohesively together.

I'm very glad that we're there in terms of bringing this awareness to the masses. I believe that the future is absolutely bright for those people who understand that.

And we're trying to educate people, make them more aware, and tell them that there's a hope, that there's an answer out there.

You know, I believe everything happens for a reason. And I'm on this journey and, you know, I'm doing now what I'm supposed to be doing. But, you know, sometimes you look back and think, if someone was able to identify this earlier for me, what. What would my life have looked like?

Okay, well, that was. I'm gonna stop sharing. If anybody is watching on YouTube, then now you can see us again. But that's. I think it's an incredible video that you all have put together. And I know that was done. When. When was that made?

We had a leadership meeting in July because of the pandemic. It was the first time we could bring together our board, advisory board, and Columbia University partners in one room. And so we held at the University Club in midtown Manhattan. And so our producer and director made that just for that occasion because everybody had heard about us having these, the partnership with Columbia, but nobody knew it wasn't real. Nobody had met everybody. So we put everybody in the room and we start. So everybody could see that there was a real honesty about everybody's position to make a difference in this space.

I love it. It's absolutely incredible. And, Sydney, I think we can jump into a bit about your story. I know you touch on it in that video, but I would love to hear more, especially being an adult who's had a very similar story. Yeah, yeah, yeah.

I always say my story. I'm 30, and it started about 30 years ago. You know, there was never a time in my life that I felt great, but I also didn't know anything different. So it wasn't, you know, on one.

Tuesday, I started feeling this way.

It just kind of always was. I think being born into a house with a black lab that I was severely allergic to did not help the case. You know, I struggled with allergies my whole life. I was exhausted. You know, I would go to bed early and wake up, and my dad every day would say, how are you feeling? And I'd say, tired. I don't know. I have to go to bed earlier, I guess, you know, But I was sleeping a lot, just not getting good sleep. I was cranky. Ask anyone. I was not that fun to be around because who wants to be around this moody chick all the time? I had swollen eyes. I kind of looked like I always got punched or something. I was diagnosed with asthma. I had terrible allergies to the dog and beyond. And then in high school, things started to kind of ramp up where I had. I was first realizing how hard school was for me, and I worked really hard, and I would go to extra help, and I would study and I would take notes and then rewrite the notes. And my grades would not reflect how hard I worked. I tried everything. I would sleep with the notes under my pillow, hoping that they would soak into my brain. It was so frustrating. And I always just felt like giving up because I'd see my other friends study, take the test, do fine. And I was constantly studying, working so hard, and just not getting the grades and being told, you just need to work harder or you need to drop down to this level. And like I said in the video, really feeling like I was stupid and feeling like I was less than because I just couldn't get it. And I Didn't know why I couldn't get it. And then things continued to escalate and I had my first full on panic attack at my senior prom, which is always fun to do in front of a whole room of people. So that. And I didn't know what a panic attack was or what anxiety was. It wasn't talked about, you know, as freely as it is now. So I just kind of thought I was dying, which enhanced the anxiety. And then flash to about a year later, I was traveling in Thailand with severe anxiety but not knowing what it was. And my dad got a call, I don't know what time it was here that I was in the hospital.

Three in the morning?

Yeah, go ahead, dad.

You said yeah, from somebody, doctor who didn't speak English well, telling me my daughter was in the hospital in Thailand and that they could. I did approve to do a CAT scanner for brain. So I was like, whoa, what's happening? Yeah, go ahead.

So I did that. Nothing was wrong with me. You're fine. You know, it just continued on. Came home from Thailand a little bit earlier than planned. And then I got diagnosed with hypothyroidism and mono at the same time and anxiety. So a lot that I was dealing with and that was. It just kept going. Then after my year abroad, I went to college and had anxiety, had a little depression, had to go off my asthma meds that I had been put on, you know, so it was just this constant of, well, what's wrong with her now? Let's fix that little part. And now something else pops up. Let's take care of that. Oh, here's a new side effect or something else that's going on. And I'm so lucky that I had my dad, who's a forever learner and a dentist, and he was like, no, something's going on. She's a healthy young person. Why do all these things keep happening? And then, dad, why don't you talk just a little bit about how you started to identify or at least think that you had an idea of what was going on?

Yeah. Well, Sydney then even pursued further. After college, she became a health coach, a certified health coach. She studied yoga in India, became a yoga teacher, she would meditate, and she was my health coach. And so she became profoundly, if you think of what's regarded as the four pillars of health, which is exercise, nutrition, stress management, and sleep. On three out of the four, she was hitting it out of the park. I mean, she was working so hard and really fit and yet feeling so poorly and she studied Ayurvedic and she had an Ayurvedic doctor. We have a naturopath that's even in my office one day a week. Dr. Christine. And they were all trying to how can we get Sydney feeling better? Sydney doesn't even mention that her digestion was so bad she would get bloated after meals. And she was again a healthy vegan. And so along around the time, back in 2008, I went back to school for orthodontics only because it always bothered me. It was like a black box. They really didn't want general dentists to understand ortho. And so I was frustrated. I was somebody that was always interested in how teeth met occlusion. And, and so I went back to ortho and I know soon to finish a traditional two year program. I would go Friday, Saturday, Sunday, Monday, that a colleague, a mentor of mine in gold dentistry, gold inlays and gold foil, said, have you heard of this guy John Mew? And I said, no. And I looked him up on YouTube and I watched him and then I ordered a chapter of his book, which was for free. And I said, oh my God, if he's right, these two kids that I have in cervical headgear, it's 100. Wrong thing. I couldn't get out of my mind. Within two weeks I was in England and I was studying with John and Michael Mew. And I took my lab technician who is, was 10 years older than I. We, I mean, he's been with me my whole life and he's a, he's brilliant and he's a skeptic. And he said, sure, I'll come along. We spent a week there. It was probably a three day course. It was only Paul and I and two others in the course. And then we went back two more times over six months and each time spent close to a week in the clinic. And I recognized stuff I'd never heard of. Picked up a book, close your mouth and what is this all about? Nasal breathing. I've never heard any of it. But on my return, I started to see in Sydney. Oh my goodness. You know, Sydney did mention she started orthodontics. Not with me. I wasn't doing ortho at the time. At age 8, she had palatable expansion. She had then orthodontics. Then she had a second round of orthodontics with another orthodontist. I took her to Madison Avenue, Manhattan. I wanted to have the best. And no sooner she finished that he put her in Invisalign. Because she was already relapsing even though nobody's a better retainer wearer than Sydney. And so I started to all of a sudden say, oh my goodness, this is a breathing airway issue. There had been no, again, I am, I'm critical of myself because I'm a dentist and I didn't recognize it. And it's part of what stimulates what we're doing because it needs to be different for the Victor and Sydney's of the future. And if we don't train Victors better, it's not going to be different. But the orthodontist never spoke to Sydney about an airway disorder, about a connection between her hypothyroidism and why she has crooked teeth. There was no discussion about myofunctional therapy was never suggested, never recommended. And we know Maya was around 15 years ago. And again, I'm not in Podunk USA, we're in New York City. And, and we were seeking out the best. So with that I said Sydney, I think you have something going on with respect to your airway. I presented her case at a meeting. Bill Hang has been a mentor of mine for many years and I, I even Learned orthotropics with MEW and then with HANG I did orthotropics for almost 13 years. It is a very difficult because there's so much behavioral modification involved. But Bill took one look at the case and he said, you know what I'm going to say? And I said you're going to say she needs surgery? And he said yes. So I came back from this meeting and Sydney said Well what did Dr. Henning said? And I said and I thought she'd be terribly disappointed. I said he says you need surgery. And she said well let's do it. And I said really? She said yeah, I'm sick and tired of feeling this way. And I said well hold on Sid, we can't just do it. We need to do sleep studies, we need to do diagnostics. You know, I have to be responsible that you know that we're doing the right thing and that if we do that that it's going to have a positive impact. So that was in that same, at that same conversation as I saw Sydney was all game. I said so well Sydney, maybe we should film this. And she said why? And I said well most people think of sleep disorders as overweight 50 year old men. And here you are, a yoga teacher, a healthy vegan, you exercise, you study meditation. I said you're knocking it out of the park. I'M three out of the four. If you fix your sleep and you get better, it says, hey, sleep has a big impact. I'm thinking of my iPhone. I'm thinking, we're going to film this on my iPhone. And, Sydney, what do you say to me, Sid?

So my dad said, well, let's just shoot it on our iPhone. And I said, and do what with it?

Just for us to watch over and over again.

Bad idea.

And dad doesn't even know how to use his camera on his phone, so there was just no shot of anything happening. So we called our friends Ed and Orly Wiseman, and they are documentarians. And not just any documentarians. They're the real deal. They've won 17 Emmy awards. So we called them and just talked a little bit about what we were thinking, and they said, sure, let's do it. Why not? Really, they didn't know anything about it. They were kind of like, sydney, sick. I didn't, you know, like, what are they talking about? She needs surgery. They're crazy. And now it's been six years, and we've been filming my journey, but it's gone so beyond that. You know, it started following me, and it's turned. It has turned into flying around the country and meeting with, you know, the best. The best doctors, people who are struggling with this. Every time we speak to someone, we learn something new, and it brings us to another path. So we're just learning and filming and coming to the end, and hopefully, you know, it's going to be ready for release in 2024. But that is what started us on the project. So from there, you know, once we were meeting with all these different people, we realized that if we create this documentary and airway disorders, it affects so many people, and so many people don't even know that it's affecting them. If we open this can of worms for people and they say, okay, I think that is me. What do I do now? Where do I go? Okay, well, now we have a problem. We realized we needed to do more, and we started the nonprofit, the Airway Revolution Foundation. So that's what we're doing right now. I'm the executive director of the nonprofit, and as we were meeting with people, Dr. Hang was actually the one we said, if we want to make a difference, what do we need to do? He said, unless you have a university behind you, nothing's going to get done. Somehow we have partnered with Columbia University in New York City. With them, we plan to open a comprehensive center for airway disorders where it's no longer going to be a siloed treatment, but ENTs, dentists, neurologists, whoever needs to be involved is involved, helping each patient with their case because it's so individualized, everyone is so different. And that's what's been so hard, because it's not if you have a do B. I mean, it's, you know, you need a team. And so, you know, great. We're going to open a place for people to go and get the treatment they need. But there's so many people who need treatment, who need help, and how can we prevent this? So we're also working with Columbia to change the curriculum in their dental and medical schools to make airway a huge part of it. Because if we can train our upcoming dentists and physicians, it's going to change the way that we talk about it, the way people are diagnosed, treated, you know, with more education, there can be prevention, you know, reaching kids at an earlier age. So that's what we're doing with Columbia, creating awareness with the documentary, working with Columbia. And then the third piece, we are working on an advocacy piece. Dad, do you want to talk a little bit about that?

Yeah. So Dean Stoler at Columbia came to us and said, as much as we want to launch the, the. The center for Airway Disorders at Columbia, which is predicated on a significant gift that our not for profit will make to Columbia, he said what we need is, in his words, an NIH pipeline. In other words, he wants us to create, to go to Congress, have a congressional hearing. And that congressional hearing leads to NIH saying there needs to be more money awarded for airway disorder research. And that money would go to every and any university that wants to write for a grant. So it's not Columbia centered. We want every dental, medical school, speaks, language program, nursing, we want them all to say, oh, my goodness, there's $500 million available, there's $100 million available for research. The NIH budget this year was $42 billion. So that's really that advocacy group is establishing with others. So, Hallie, we really see ourselves as wanting to make alliances with Hallie and your group, your following, Renata and Airway Circle and her following, you name it, Howie Hinden. And so all of these different groups are groups that we want to be allies to, because what we really, we're not doing education, we're not educating professionals, we're not even trying to educate laypeople. We're going to create an awareness, but they need to go. Then all of a sudden, a Myofunctional therapist sees this or speech language and says, oh, I need to go for training. Where do they go? They go to Halle or I'm a dentist and I need to pursue more education. They go see Bill hang or Ben Maraglia. And so we need all those because we're not doing that. What we're doing is creating on a massive basis through a documentary series. So it won't be a one off, it'll be a series, a great awareness. And then with Columbia, we have the gravitas, as long as we get a buy in from all of you all to create this grassroots movement which shares the story of tens of thousands of people so that when we go to Congress and the Congress, people that sit on that committee says, oh my goodness, I have, you know, 5,000 people in my constituency that have joined this movement. And then we have plenty of experts. Howie, you've interviewed most of them. We're not going to be the people that testifies before Congress. They don't want somebody to share. They might have two or three people that want to share their emotional stories. And maybe it's, it's Candy's daughter that shares her story. Maybe it's a city. It doesn't. But then we'll need the experts. And so that's what this is about. Once we create that NIH funding now all the universities, because that's what's going to move them. Money is going to move them. Now they're involved and then that'll lead to a change in curriculum. I don't think you're changing curriculum. I could give them $10 million. They're not changing curriculum. But if there's year after year money from NIH for airway disorders, UCLA will be involved, Michigan will be involved, Florida will be involved, Columbia will be involved. And that's the competitive environment we need to change it. And when the universities are involved, then outliers like Hallie Vulcan and Victor Avis and Bill hang and resume overhead who are doing things that nobody else is doing now, all of a sudden they become instead of outliers, leaders. And now people are clamoring for the education and that's what we're doing. So we see ourselves as an igniter. And this is a give back. This is not, this is not to build my personal practice. And quite honestly, by the time this film comes out, I need to be out of practice because I couldn't deal with what would happen and I'm not prepared to deal with it. This is about much is given, much is expected. And Sydney, who was willing to share her story publicly, have cameras in her face, you know, right after surgery. It would have been in her face during surgery, except for the fact that it was during COVID But, I mean, she shares, you know, the innermost parts of her story. And the filmmakers, they are autonomous. I mean, we. We make the connection. We've helped to educate them about what airway disorders are, but they have total control over the film, where we're not going to be the editors, we're not going to say this or that, but. But. But they own it now, Edwardly, you know, they. They know more about airway than most dentists do, so.

Well, that's.

That's incredible. I'm sitting over here just nodding my head the whole time while you're speaking, because, you know, as the patient, as the mom of the little kids, who I now have been able to do the early intervention with the early expansion, you know, Mayo, as a speech pathologist who didn't get any of this in my graduate program and who had to seek it all out myself and just, you know, fell down that whole rabbit hole of continuing ed. They say Maya will be required in speech pathology programs within so many years. And I think we should be coming up on that. But who knows with the pandemic where we're at with that? But I think this is. I truly think this is incredible. I used to live up until August of 2021. I lived in downtown, but Bethesda in Maryland, right across from NIH and Walter Reed. And I developed a really good relationship with the speech pathology department at Walter Reed. And they do it. They do research. And we were trying to figure out a way that we could even do some of the research together. But, you know, time, money, you know, so I love what you're putting behind what you're doing with your foundation because you're the guidance you've received from experience that I've seen is absolutely right. You've got to get universities behind this. And I think this is exciting and incredible and, you know, I'd love to be even a small part of it. So. So tell us, you know, if individuals are like, oh, my gosh, how do I get involved in this? How do I, you know, what are next steps for the foundation? Share with us, you know, what does that look like?

So the best way right now that people can get involved is to add their voice. So on our website right now, we have a menu item. Add your voice, and you can go in and fill out a short survey. You can just Check the boxes. You can add more if you want. You can even upload a video or a picture. It's all whatever you want to do but share how you've been impacted by airway disorders. The thing is, we put a little disclaimer on top that even if you have not been diagnosed or you're not sure if you fit in to this category, look at the examples that we give. Someone who's mouth breathing, someone who snores, someone who has learning challenges or weight problems. It's an endless list that the root cause could be an airway disorder. We encourage, we ask for people to go in, share their story, add their voice to the revolution. And this is going to help us as we move forward to that congressional.

Piece, to that NIH piece, because that's the wisdom from Dean Stoler, is we need to have 20 to 30,000 of these. And so some of the groups have collected stories along the line a couple of months. I spoke to already said they would share them with us. And so. But right now, if anybody listening to this just goes to our website and takes the survey, it can literally take you a minute.

And the website is airwayrevolution.org just, well.

Yeah, we'll make sure that's also in the show notes. And, you know, this goes out to my, my whole email list. And I think we're around, I don't know, 60, 70,000 people on my email list. So you're gonna, you know, I can't promise 30,000, but maybe you'll get a couple thousand. We'll see what happens. Well, obviously, you put it everywhere. Short survey, everyone.

It does not take a long time. So you can do it in five minutes. You could do it in less than five minutes.

And it could be to just one other point. It doesn't need to be about them. It could be about their father, their mother, their child. And that's why, Hallie, I know you're singing the same song. It affects every family. You know, we don't have, we don't have good studies about prevalence. We don't have good studies about prevalence in children. We don't have good prevalence studies overall. Because when you use airway disorders, you have studies that look at obstructive sleep apnea, but that doesn't include others like upper airway resistance syndrome and narcolepsy. And so there's not a study that's including. And most all the studies exclude a huge portion of the population that doesn't have access to care. It doesn't go to the dentist before age 6 and maybe doesn't go to the dentist, but for emergency care, much less have a physician. So the, you know, whether the number is 30% or 50%, I believe it affects almost every family because if it's not affecting you or your spouse, it's likely affecting one of your children or one of your parents. And they may not know about it, but they had a heart attack or a stroke or they have diabetes or they have dementia and who knows that maybe they've never been diagnosed. And so everybody should take a survey because quite honestly, it's affecting their life. They just don't know it yet.

Yeah, well, and Sydney, you talk about all these symptoms that snowball over time, right? And you know, that's something that we see so consistently, regardless if we're working with pediatrics or we're treating adults, because we don't do a lot with adults and in my private practice, but we do work with myo, with MYO cases, adult, you know, across the lifespan. And I will tell you, I mean, it's the same story repeatedly where we get individuals in their 30s, their 40s, we've got older, we've got younger, but a lot of times they're young parents, they have been to 15 specialists, they have a diagnosis of PTSD or some other type of psychological, you know, diagnosis that's been attached to them. And we have grown men sitting in front of us bawling their eyes out because we're finally telling them, well, we can help you. And they're like, what? Like what? And we start talking about all of these, well, this symptom sounds like it might be attached to this, and this sounds like that maybe came from that. And we start to put the pieces of the puzzle together and it's really incredible just to see them light up with hope again because they're finally realizing, wait, hold on. I just, I was told to come see you. I just thought this was going to be another evaluation or visit like all these other ones I've done. And we spend time with them and we talk about the options and we talk about the other specialists we want to help, you know, connect them with. And it's, you know, it's very self serving and that it's very rewarding work, obviously. But also we're, we're helping the patients. And I think what you all are doing is going to exponentially increase that significantly, which I can completely understand why you want to be out of, you know, be in retirement by that point, Victor, because I think it's Going to totally blow up in a good way. Yeah, but this is, this is really incredible because we also know that finding the professionals that are truly trained in this arena and that do work together, it can also be very challenging depending on where you live and who you're currently talking to or who your current providers are. So I commend you all because this is like, this is just, it's amazing. It's incredible.

Well, thanks, Hallie. Just a couple of things I want to add to that. The challenging piece is true because if there's a general dentist that's not extracting teeth, but in his community he has orthodontists that are. It creates an, at the least, an unnecessary, uncomfortable piece. And this shouldn't even be a discussion any longer. But there's not a dental school orthodontic program in the United States, to my knowledge and that of Bill Hangs and others that I know of, that is categorically saying we would no longer teach the extraction of teeth. And so even that which is so basic to you, Hallie, that of course that should never be done. This is not an agreed upon piece. And so in the little circle of airway minded people, it's obvious, but in the grade of medical and dental and speech, language and physical therapy communities, this is not, this is not even a consideration. You know, orthodontics is still for most just about creating straight teeth. And that they don't believe by and large that they can impact people's health. And that has been told to me by a head of department. So we have work to do. And so, you know, we're poised, this is our life's work to put to make this happen. The other piece that we didn't mention that we think is critical is, and this is not Sydney's story. It started off by telling Sydney's story, but it's very important that we recognize this is a story that doesn't know age, it doesn't know gender, it doesn't know race, it doesn't know socioeconomic boundaries. And so many people don't have access to care. Part of our, our work is it'll start as a million dollar endowment to provide care to those who wouldn't have access. Columbia University happens to be in a great position for that. They're in a very low socioeconomic area of New York City. A lot of their patients are from that background and they embrace that possibility. What that'll look like, it'll probably be some community health preventative, certainly trying to impact mothers so that children are screened earlier and get early access to care because that's when we can have the greatest impact and the greatest bang for your buck. Not doing orthognathic surgery. And again, this is not a story about orthognathic surgery. It happened to be where Sydney unfortunately had to end up for a solution. But it's how do you prevent that? And also to know for those people who are failing with cpap, there are other things. And so it could be cpap, it could be inspire, it could be mandibular advancement devices, it could be myofunctional therapy and nasal surgery. And that's the piece. It's unfortunately very individual. And I listened to your story and if you could have unlocked it with one procedure, Hallie, you would have done it. You would have just, why don't you just go do this? And it's because you didn't know maybe the expander would have done it, but it didn't quite do it. So then you worked and did the nose and now you hope you'll retest. And that's the piece. It's. For most adults, it's a process of peeling away the onion, trying the simplest things first, measuring to see if it's had the impact and if not going a step further. And that's why it's not easy. I like to say treating airway disorders on adults is easy. It is not because it takes trial measurement and then retweaking and staying with that person in that relationship until you come to where you're managing it better for children. I think we've got a much better idea on not that it's easy, but how we could really solve it early on, at least anatomically. We still have environmental factors which are challenging and soft foods and both parents having to work. So breastfeeding is more difficult. There's cultural challenges that are going to make the need for our services are not going to be short lived. But anyway so that the access to care is huge. And recognizing this is not Sydney's story or Victor and Sydney's story. This is a story about airway. It'll tell the story with a great mindset towards how it affects diverse people.

And that's even more incredible. I mean I was watching a show on Netflix about a hospital in New York that I think it's based on a true story where the medical director comes in and flips everything upside down.

Upside down.

But it's all about patient care. And I can't stop watching it because it's just that whole concept of patient first like we're going to make this work. They say, no, we'll figure out another way. And, and that sounds a lot like what you all are doing. You're really making this accessible by, you know, bringing this, this possibility, bringing the foundation forward. And that's another one of those big conversations we have frequently. What about the patients who cannot afford these services? What about the patients who want them? They're informed, but they're not getting them because time, location, money, you know, all variables. So I think that's again, incredible. I love what you're doing. You also mentioned early intervention, that piece and screening. And that was another thing that even my field I felt like was we talk about screenings, but they're so highly focused on speech and language. I was never taught pediatric feeding at all in a course. I only, they only focus on adult dysphagia, adult swallowing issues in my master's program. And I had an incredible teacher. She took us to the radiology floor at NIH and was like a whole really interesting experience because she ran that floor and she was an slp, but also a surgeon. And so I had a really incredible introduction to that, but nothing on pediatrics. And so coming out of school and everything, being so highly focused on speech and language, I was sitting here going, well, what about the kids that aren't eating? Like, you guys just put me in a classroom with kids who are on feeding tubes or who have 24 hour nursing care with them at school and they're pouring their feeds down their throat. And it just, it got my wheels turning. And fast forward now, you know, so many years, when I initially launched my own feeding course, the thing that I looked back at, I said, what is the easiest entry point for clinicians to even just step into this? Because I think it can be intimidating from a medical standpoint. And I said, I don't think they.

Even know how to screen to determine.

If they need a feeding evaluation. And so I, we created my team, I created a pediatric feeding screener and I started encouraging everybody to, you know, give it. Whenever you do a pt, ot, SLP screening on a child, I don't care how old they are, you need to do this. The kid can have a snack and in two to three minutes you can check some boxes and you'll know if they need a referral. And then that one I ended up doing, making a myo one too. But that pediatric one was enough to know if we have concerns about dental concerns, if we've got airway concerns, dental being malocclusion, asymmetry what are we seeing immediately on the face? How are they chewing their food? Are they using both sides of their mouth?

What is their tongue doing?

In a matter of two minutes we had answers. Just to know if we need to take this a bit further. We have concerns about tethered oral tissues, which is the big debate in my field. Not enough research and this big split down the middle there. But it's been really incredible because I've now had teachers come forward and other individuals who said, hey, can I, can I use the screening? And I said, well you're not assessing or diagnosing if you're just screening to figure out if you are referring on to someone else, please take it. And now every time I launch the course, they do a free five day training where they join me for about an hour each day just teaching them and encouraging them to go out there and use a screener to, while I start to, you know, implement some of the airway into the neural tissue, stuff into it. Because no one, no one was talking about this back in 2019 and that's not that long ago. Why, you know, why was this getting missed on our birth to three patients, on our birth to five kiddos? So yes, I am 100% with you on early intervention. We can obviously treat across the lifespan, but what can we do preventatively and, or with these babies who are born with these issues? We know the tongue develops 12 and a half weeks in utero. They're swallowing with the swallow they're going to be born with. They're coming out of the womb with that swallow. There's already a functional impact. Why are we not screening at birth? Why are we not jumping in then to then prevent the snowball of issues that turned into my story, Sydney story and I'm sure 30,000 plus other stories and you know, that you're going to have shared through your foundation. So I love this, I love everything that you're doing. I'm going to share it, we're going to shout it from the rooftops, we're going to plug it all over the place and I hope you guys get a lot of voices shared about their journey, their family members journeys and I hope a lot of people forward it to their, their patients to fill out as well.

Well, thanks Hallie. And we just love the opportunity to work synergistically with you and people like you and, and, and you know, be happy to come back in a year and kind of let you know what our progress is. And, and I think it's the screening piece is so interesting because there again, it creates a new bottleneck because we need the screening. And one of my other two daughters, Samantha, is a second grade teacher. And so it's so interesting. And Samantha knows a lot about airway disorders and it's interesting. So she sees things. Whether a child is tired or having cognitive issues. It's not a safe environment for her to suggest it because if the parents go to their dentist, like the dentist is going to say, what are they talking about?

What do they know?

Your second grade teacher? But there's going to come a time, Hallie, where these screening tools in the hands of a second grade teacher are going to result in, by and large, her being able to go down the street to the dentist or the physician, the pediatrician, and they're going to say spot on because they will have learned it. And that's where, that's where it's going to go. So the two ends have to meet. The screening has to be, you know, raised. But the level of care where we need to do that. And so, you know, we're going to create the awareness or help create greater awareness with our documentary and through the NIH piece and the university piece, create more well trained physicians, dentists. And we need better research. I think we will come up with better solutions. And you know, CPAP being the gold standard and 60 to 70% really don't use it. That's. Come on, we got problems. That's the best. And most people can't use it. And maybe that's not the best thing. And so I think we have bright minds that when they apply themselves and universities can be helpful. So given the money and resources they have, they can move the needle on creating better diagnoses and better treatments than we have now. So it's an exciting time for us to be in this field together, that's for sure.

Absolutely. And I mean, and you're coming at it from every angle. Nothing seems to be untouched at the moment. So I love that and I would love to come back here in a year and we'll do that, update conversation, and hopefully we work together a lot between now and then to help carry this forward. Is there anything else that you guys want to add before we wrap up?

I think that's, I think that's it. We covered most of it. Our website has videos and more information. But yeah, if you can get on there and share your story, add your voice, you know, you would really be helping move the needle.

Absolutely. So we will, we'll make sure that's in the show notes. And Victor, did you want to add anything?

No. It's a great platform. What you're doing in terms of bringing in many different people to speak on such a variety of topics, to educate professionals and inspire their greater learning and interest is invaluable. And Your consistency since 2019 is flat out amazing. And you found a way to express something that wasn't a bright spot in your life with respect to your health and that with your children, and you turned it into a positive. You know, we applaud you and we're running alongside you.

Thank you.

I appreciate that. You know, I tell everyone I went to look for the podcast assuming it was out there, and when I realized it wasn't, I was like, in true Holly fashion, I was like, oh, all right. We got to create this. Because if I'm a professional in this space and it was this hard for me, now I have this onus, I feel to bring this forward, especially to other parents and families and even professionals who want to, you know, who are in the space or want to get into the space. So it's been, you know, really incredible journey. And I tell everyone I, you know, I get nervous when I get up in front of groups and I speak, but when I sit down and have these conversations on the podcast or I teach, I'm in my element and I, you know, it's like having coffee with a friend and these conversations, I'm like, I used to sit there and be like, I wish I could just be a fly in a wall with some of these conversations. And it was like, well, why don't we do that? Why don't we just do that and put that on the podcast? So here we are. So thank you all so much for joining me. Everyone go to airwayrevolution.org again. It'll be in the show notes. We'll make sure they have a link to your video and all the things. And I appreciate you hanging with me and sharing all the incredible things you guys are doing.

Thank you, Allie. Have a great rest of the day.

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