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What Is Rett Syndrome?
Samantha Brant • 2024-09-04
Dylan Carnahan:Welcome to the Simple Questions Podcast. This is your host, Dylan Carnahan. The question for this episode is, what is Rett Syndrome? You will learn in this episode, common symptoms, the challenges loved ones face when caring for someone, and available options for managing Rett Syndrome. Our guest is the mother of a child who has Rett Syndrome, has put together several charitable events for Rett Syndrome, and works at the International Rett Syndrome Foundation as the family and community engagement manager. I introduce to you Samantha Brant. It is approximately five years ago while I'm working at Red Crow Brewing Company. This holds the significance to the podcast for a couple of reasons. The first of which is that Chris Roberts, the co-owner of Red Crow Brewing Company, was the first podcast guest on the Simple Questions Podcast. And the other significant point for Red Crow Brewing Company is that is where I first met Sam here and where I first heard of Rett Syndrome. Now, I don't have a specific flashbulb moment where I recall hearing the word in context, something like that. If I did, it would be a lie. I'd be making it up. I simply don't remember. But that's kind of my first, I guess, window into the world of Rett Syndrome. So I'm going to defer to you, Sam. When was the first time you heard the words Rett Syndrome?
Samantha Brant:Oh gosh. It's been several years before that. I would say I didn't hear it. I read it. And the reason why I read it is because my daughter, Macy, was having some just difficulties meeting milestones. And I started doing some research of what could be wrong. Why is she grinding her teeth? What, you know, why would she have low muscle tone? And the words Rett Syndrome continued to come up. And I continued to push them to the bottom of my list. Number one, knowing after reading how severe and bad it is. But number two, she just didn't quite seem to meet what Rett Syndrome was explained as. She didn't look like those pictures of those kiddos. And so I read it and it laid in the back of my mind until we received her diagnosis in 2016.
Dylan Carnahan:Can you talk us through what that is like as a parent to not only the confusion, but I'm sure all the other emotions that come with even up until getting that diagnosis?
Samantha Brant:Yeah. You know, I have an older daughter, and I was in childcare for 15 years. And so I raised little ones and watched them meet milestones, and knew educationally and physically, emotionally, mentally where kiddos should be at what ages. And so when Macy was about eight months old, I knew that she was really relaxed and laid back, almost, quote, lazy, unquote. And you know, I just thought she was just a happy baby. And so maybe I shouldn't be worried, but there was something in my parent gut that told me, no, this isn't normal. She's not sitting. She's not wanting to crawl. She's not yearning to move. And so it was at her nine month checkup, I said, you know, do you think we could do some physical therapy? Maybe that would help. And I can remember our pediatrician saying, you know what, she's going to catch up. It's going to be fine. And let's wait till she's a year old to worry. And I said, no, I don't want to wait until she's a year old. I want to know that I'm doing everything I can as a parent to help. And so that next month, we started physical therapy. And the therapist was not a pediatric therapist. It was just a normal physical therapist, like you and I as adults would go to. But I remember her saying to me, she seems to have hypotonia. And I said, what's hypotonia? And she said, it's low muscle town. And I thought, oh, okay, well, we'll work out and it'll get better. And she said, hypotonia or low muscle tone isn't a diagnosis. It's just part of probably a different diagnosis. And that was really kind of stopped me in my tracks because I had read, you know? And it was at that point, she said, I think you need to see a neurologist. And we did so. We started our genetic journey. We did an MRI. We did nerve conduction testing. And we did these blood tests and all these tests to see what was wrong. And they kept coming back. Great.
Dylan Carnahan:Fine.
Samantha Brant:Everything's fine. And it was then that the neurologist said, I'd like to do some genetic testing. And I remember thinking, I'm sure it's going to be nothing. We're going to be fine. She's going to catch up just like our pediatrician had said. And so we did. And it was hard. It was dark. At that time, I had no idea what we were facing. But I remember being up late and continuing to just scour the internet to think, how can I find what's going on? Right? And all in this time, this beautiful little girl who's a year old and feeding herself and rolling and laughing and doing all these amazing little cute girl things that she did. Right? And I remember thinking, nothing can be wrong with her. And when we finally received our diagnosis of Rett Syndrome on June 20th, 2016, it was, I remember the phone call distinctly and I was at home with Macy alone. And she said the genetic counselor on the phone gave me the diagnosis of Rett Syndrome. And she gave me the diagnosis of atypical Rett Syndrome. And I went into a black hole. It was like being thrown in a dark hurricane. And she said those words. And she started to explain things. And I can't remember the phone call after that, because I just went blank. So it was dark getting there. But then looking at Macy and thinking, you're perfect. You're this can't be. And I remember those several weeks after thinking I would wake up from this nightmare. This isn't real. This isn't going to be her life or my life. And so that's really how the beginning went for me.
Dylan Carnahan:I really am grateful that you shared that story. I think that exposure to hearing stories like that is beneficial because there's going to be someone that has a similar story or maybe unfortunately has to go through one in the future. And so I really appreciate you coming on and sharing that story and to continue to tell your story. I think the awareness and just letting people know, you know, I can't imagine the confusion. Again, you're being reassured by people, right? And then it just doesn't turn out to be that outcome. I'm sure that's just absolutely devastating. And then again, you're providing for someone, right? You're a parent. And so you're trying to do best by them while navigating this whole thing. So I cannot imagine that. I'm curious from that point forward, how do you become involved with the Rett Syndrome Foundation? It seems like a lot of the other, you know, kind of more rare conditions, these foundations are really a beacon of hope, whether that be for awareness, exposure or resources.
Samantha Brant:Yeah. So I really didn't know how I was going to get through that first year with her. You know, hindsight's always 2020, right? And I, it was right after diagnosis that I got involved with the International Rett Syndrome Foundation, and just really started learning that there was research out there, and there was hope, and there was other families, and I wasn't alone. And I think finding out that I wasn't alone was really that beacon of hope for me. I just couldn't bear that other families were going to have to go through the pain that I just went through, and continued to go through. And so at that point, I took Macy to her first Rett Syndrome Specialty Clinic down in Birmingham, Alabama. And it was April. I remember driving 15 hours down there, stopping in Memphis, Tennessee, letting her see Beale Street, and just trying to make the best of it. And I remember going to our first clinic visit and seeing the grandfather of Rett Syndrome, Dr. Percy. And he and his nurse, Jane Lane, took Macy in, set her on their lap. It was really the first time that I didn't have to explain Rett Syndrome to somebody that they knew better than me. And that was a turning point for me to want to be involved and want to get involved. And I remember driving home from Birmingham thinking, why hasn't the community in Kansas been together? There are other families, but why haven't we done a stroller-thon or why haven't we done a fundraiser community event? And it was right then and there I started making phone calls and decided that it stops here. This is how I get involved. And that's where the very first fundraiser, it was called Red Crow Goes Purple for Rett at that time. And it was in the Red Crow's original building. And I remember going to Misty and Chris and explaining to them why I felt really pulled towards their business and what it meant to me, and what it meant to Rett syndrome. And I remember Misty sobbing after hearing about Macy and our story. And she said to me, yes, have the brewery do it. And our first community event was so moving that we raised over $10,000 the first time. And hundreds of people showed up from the community, from the Rett Syndrome community, from where we lived, just to find more out and be of support to us. And that was a life turning moment. That brought me out of the darkness. And I got the bug to get the community together and continue to help people. And so it just grew from there. But at that time, that was in 2017. At that time, I went to work for Misty and Chris at Red Crow because I just loved their story and wanted to be a part. And at that time, there was an opening at International Rett Syndrome Foundation for a family and community engagement manager. And I remember asking Misty if she would write me a letter of reference. And a couple of others there who all wrote letters of reference like, yes, this is your gal, this is your person to do this. And I went on to interview for the role and took the position I'm in, family and community engagement manager in March of 2018. So Macy had just turned three. And so quite a quick turnaround from diagnosis at 17 months to now I get to help others navigate this diagnosis at that point. So I've been in role for, gosh, almost seven years in March. It'll be seven years. And it's been beautiful to be able to handhold each family that has received the same diagnosis, the same pain that I went through, and walk them through to the other side of hope.
Dylan Carnahan:Wow, there's a lot of things within your story there. Firstly, yes, it's incredibly vulnerable. I don't know how to describe it when you have to talk to a medical professional about something that you have that's different and they don't have the education for it. It's really tough because you know that you're starting that conversation a few steps back and it makes you vulnerable about what information you might receive. Not that you're going to receive bad information but maybe not information that's the most applicable to you because we're starting a little bit back. The other thing too is with what you've done, Sam, there's a lot of, you'll hear a lot of guests that come on the podcast, but there's a big difference between talking about doing something and doing it. It's a huge difference and so it takes a lot of strength to commit to action and especially the way that you've done, so I have to commend you for that. I'm going to take a huge step back. Huge step back with just the most basic education question, which is we've talked about a lot, we've name dropped it, we've alluded to some of the things regarding it, but what is Rett Syndrome?
Samantha Brant:I always explain it in really layman's terms for folks because I didn't go to medical school. I didn't, this isn't what I sought to study. Rett syndrome is a neurologic disorder, neurodevelopmental. It is like having Parkinson's, epilepsy, autism, cerebral palsy, breathing abnormalities, anxiety, GI problems, and many other things wrapped up in one child. It is so complex, we still don't understand fully. It is such a spectrum of a disease. So there are over 900 mutations in the MECP2 gene, or MECP2, you may hear it called. And that gene lives on your X chromosome, which is why you see mostly females diagnosed with this. But that doesn't mean there aren't males. There are males, and science has brought that to light. There are males that can have Rett Syndrome, but they're about one in one million, whereas females are about one in 10,000 to 15,000. So it affects these little kids in different ways. They can have the same mutation and be affected in two different ways. And when I say spectrum, I mean there are kiddos up walking, running, talking. And then there are kiddos that are completely immobile, have a trach, depend on G-tubes, trachs to breathe, severe seizures, hundreds of seizures a day. There are some that never get seizures. And so it is such a wide range. Rett Syndrome is a wide range.
Dylan Carnahan:Interesting. And I know that a lot of these more rare conditions have the unfortunate, unknown aspect. As you've said, we don't know everything. We don't know whether that can happen to various different things that we'll talk about, that there is an unknown element. And I'm sure that that's very frustrating. That can be that can be daunting. I want to kind of I appreciate you sharing some kind of those base facts. I'm going to I'll kind of go back a little bit to some of the things that we do know. You mentioned some of the things that this is analogous to. But what are some common symptoms associated with Rett Syndrome that you may see with people on different ends of that spectrum?
Samantha Brant:Yeah, that's a great question. So your child is born happy, healthy, normal. Usually at birth, you know nothing is wrong. That's the really hard part about Rett Syndrome. Your child starts to develop. They coo and smile and roll and crawl and walk and talk, just like any other kiddo. And then all of a sudden, usually about 6 to 18 months, but there's a little bit of a span, they start to lose those skills. So your child that may have walked, loses the ability to walk. Your child that may have had words loses those words. It's called regression. And they regress and skills. And it is, for a parent, it is like having a rug pulled out from underneath your feet and you just smack the ground because you can't, this is happening in front of you and you don't understand why, right? They may go through a time that they really, like, pull their hair or grind their teeth. They begin to lose hand use. So, for example, Macy went from feeding herself and picking up Cheerios and blueberries and Kiwi and all these things that she loved to eat to, I can distinctly remember putting mandarin oranges on her tray, turning around to do dishes, turning back around and she's just staring at them. Because her hands, her hand stereotopies started to where all she would do is be able to clap or put her hands in her mouth. She wasn't able to use her hands any longer to feed herself. That is devastating as a parent to watch. So I'd say, you know, grinding their teeth, the losing of skills are really, really big indicators that something is off, something is wrong. What is it, right?
Dylan Carnahan:Yeah, and that's, like you're saying, I'm sure that that's very startling, right? There's a lot of confusion that comes from that. And that's, it's not easy to imagine kind of what emotions come from seeing that.
Samantha Brant:Yeah. Well, and you know, right? You're, you've seen your kiddo grow and learn and how smart they are and what a personality they have. And for that to just not be taken away, but have that barrier that people start to think, well, well, what's wrong? And then they think they can't learn. But you know, you watched them. They can. They're just little, they're in little bodies that are broken, but they're cognitively completely there and aware and can learn. That's difficult when you start facing that.
Dylan Carnahan:Yeah, I'm sure there's some kind of judgment that comes with that, right? And that, right, if someone can't necessarily speak for themselves, right, it's kind of hard to have that conversation, that narrative, right? And so there's going to be a lack of understanding there, and I'm sure that just increases frustration. We've talked about some of the known kind of symptoms associated. Something I want to go back to is that you mentioned during your diagnosis, the diagnosis that you were told, quote, atypical. Can you elaborate on maybe what that distinction is and if there are other distinctions?
Samantha Brant:Yeah, I will tell you this happens a lot in the community, and I hear this a lot from families. They use the word typical and atypical, and I can distinctly remember, oh, she has atypical Rett Syndrome. That means it's not as bad as typical. And that was my first instinct as a parent, is what atypical meant was maybe not as bad. And really, to give better distinction of what atypical means in Rett Syndrome is they did not, the kiddo did not follow the normal, quote unquote, path of what the typical path for Rett Syndrome is. And what that looks like is typically, your kiddo gains skills, and then they regress and lose these skills. Macy did not present like that. Macy just didn't gain the skills. She never crawled. She never walked. She didn't do these things to be able to lose these things. So did that make it better or worse? No, it just made it different or atypical. So that's where that distinction happens with families, I think, and our automatic instinct as a parent is atypical. It's not as bad or it's way worse. That really isn't the case. It's just different than what the classic looks like. And atypical can be considered that they're walking and talking and they don't have a regression. So it kind of means a couple different things, but really if you take a step back, it just means they didn't follow that same standard guideline to get to the diagnosis of Rett Syndrome.
Dylan Carnahan:The almost like the presentation, if you will.
Samantha Brant:Yeah, yeah, yeah.
Dylan Carnahan:I appreciate that distinction being made there. That was something that earlier I was like a little curious about. Yeah. I know you did a great job. I already forgot, I'm sorry, I forgot the like scientific, talking about kind of the genetic aspect, but I kind of, to broaden that up a little bit, I know you mentioned again the genetic aspect, but are there any other known causes or risk factors for developing Rett Syndrome?
Samantha Brant:Yeah, that's what makes Rett Syndrome really hard. It's nothing mom or dad or grandma or grandpa carry in their genes. So on a normal basis, I'll say that. So normally, it is completely random or de novo, as you would see in genetic results. This randomly happens. Albeit, there are some parents that do carry a mutation of the gene, but they don't present. But then they do have children that maybe do. That's less than 1%. It is very minimal. Normally, it is completely random how this happens. So, that's one of the first things parents ask. What did I do to cause my child to have Rett Syndrome? Nothing. You did nothing. There's nothing you could have done. There's nothing you did. It isn't the drink you had in college. It isn't the mud pie you made in the dirt and got sick. It's none of that. And that's probably really the first step to understanding and going through this process of this journey because it's a grieving journey. So it is the MECP2 gene or MEKP2 that is broken, we'll say, mutated in the wrong place. Those are some layman terms, but it lives on your X chromosome, which is your female chromosome, right? That gene was discovered in 1999. So prior to 1999, that gene had not been discovered. And so Rett Syndrome itself is a clinical diagnosis, meaning you have to meet the certain criteria to receive this diagnosis. But once that gene was discovered in 1999, they were able to genetic test for it. So again, there is now over 900 mutations on the MECP2 gene that they look for in these genetic tests.
Dylan Carnahan:Wow. That has a lot of diagnostic power, right? A little more clarity, right? I want to get back to the journey you referenced. Now, we've talked a lot about some more basic education things, likely surrounding kind of presentation and initial diagnosis and some of the challenges with that. I want to go back to the journey and focus on what challenges do loved ones face when caring for someone with Rett syndrome?
Samantha Brant:Yeah. So I'm going to get deep here. Because this is deep. Number one, the emotional toll it takes on a mom and a dad and a grandparent or a caregiver in a family to watch their child lose skills is devastating. It is a battle, it is a fight, you don't get to change right then and there. There is no cure, there is no fix, there is no medication that you give your child to make them walk again or talk again. So that is emotional. There's a lot of anxiety that happens, you're worried. When is your child's first seizure going to happen? Is it going to happen? When are they going to lose the ability to walk? If they do, when are they going to lose the ability to swallow safely? It truly is devastating. But not only that, it adds another layer to raising a child that you thought you would put in daycare, or they would go to preschool and come home and tell you all the things that happened at school, and are able to articulate to you, I met a new friend today. I learned my ABCs. Instead, you're feared, you're like filled with fear of sending this vulnerable child, who can't come home and tell you, who can't tell you, my left ring finger is broken. It hurts. My stomach hurts. It's always a puzzle, always trying to figure out what's wrong. Is my baby going to be hurt at school and not be able to tell me? Are they going to have friends? How am I going to know they love me? It is, I mean, it leaves you breathless every day. And then let's add another layer. Daycares don't take kiddos that can't usually walk or feed themselves, who don't potty train. So it comes a time that you as a parent have to face who is going to care for my child. And most end up not being able to work, and they become a one income family, which is financially devastating while they're paying for medical care and therapies, and all the things this kiddo needs. They start to find that work is difficult to go because their child gains seizures and sometimes gains feeding tubes. And so lots more doctor's visits have to happen. And then they grow, and you have to look at getting equipment. And DME, Durable Medical Equipment, so their first wheelchair. Their stander, so they can stand and get bone health. Gosh, just, there's just not words for it. And so when I said it's emotional, it takes a toll physically. A lot of these kiddos have sleep problems. And so you're, you're not getting sleep. Financially, you're in this one-income family, or maybe by then you're a single parent, whether that be the dad that has stepped in and taken care or the mom. Divorce rates are extremely high, but they're even more high in a special needs family, such as this, who, this child becomes 24-7 care. There isn't a time, it's safe to take your eyes and ears off of them, because they may cease, they may fall, they may roll off a bed. The precautions you take become your entire life, caring for them, so.
Dylan Carnahan:I appreciate you doing your best to articulate and put that in a way that others can understand. I wanna, if you wouldn't mind, I think where I know where this is gonna go, elaborate on just the fact earlier, you mentioned you said this is a grieving journey. Can you tell us more about that?
Samantha Brant:Yeah, it's a grieving journey in the fact that your life is never going to be what you envisioned it for your child or for you. You know, we have kiddos and we can't wait for them to play soccer or softball or dance. You know, we can't wait for them to go to school and be in the student council or a part of these huge things that walk down the aisle, get married, have children of their own, become independent. That does not happen with children with Rett Syndrome. And so as a parent, you have to go through this grieving process of, and this is really hard to hear, and it's hard to say, you're grieving the loss of a child that is still here. So they did not pass. They are still here, but their future looks very different than you could have ever imagined. And it doesn't mean it's not going to be full of joy. It doesn't mean it's always going to be dark. It does not mean any of those things. It just means different. And that is really difficult to sometimes live with.
Dylan Carnahan:You were in line about being heavy, were you?
Samantha Brant:No, no, it's hard. To brighten that, to bring that beacon of hope around. I sat in that for a very long time and sat asking why, why me, why her? I was angry, and that was difficult, but I had to finally get into that grieving journey of acceptance. And I'll say this, I accept that we have that diagnosis of Rett syndrome, but I'll never accept that we won't stop trying to help and to do better, to do better by her and to do better by the community. Macy has gone on to be parts of the things that were a little different than I envisioned, but still parts of things. She got to brew a beer at Red Crow, right? Named Macy Beer. I mean, what kiddo gets to do that? Not many. She this week alone is running for student council. She made posters, she has to do a speech. Just like all the other kiddos, but she's such a popular rock star, and these kids have watched her overcome seizures and overcome sickness and come back with a smile at school all the time that she's just a shoe in. She's going to be a student council. She's done different things. We just adapted them. I was always worried about communication. How would she say, I love you? How would she tell me things? How would she learn? And there's adaptations for that along this path. And she has an eye gaze communication device she uses. And she has told me, I love you. But in the same breath, she's told me, go away. So again, she's just in this broken body. But there are adaptations you can do. She's ridden a bike. She swam with dolphins. She's done lots of beautiful, amazing things that I never would have imagined in our life when I received that Rett Syndrome diagnosis. And we don't stop. We're going to continue. I can't wait for future things with her.
Dylan Carnahan:That required a lot of strength, I think, to let someone see what that emotional journey was like and to let us hear some of those challenges. And it takes continued strength to kind of push forward. And focusing on, again, really leveraging your experiences here, you mentioned a couple different things. And when I say treatment, this can be kind of more general, as you said, some of these things that are aids, that are helpful, such as, I know you mentioned this, eye gaze. What are, and also I'm prefacing, I know we've talked a wide range of spectrum, so everybody's a little different, but what are some of the available treatment options for managing Rett Syndrome?
Samantha Brant:Yeah. Well, I'll tell you what, Dylan, you joined us at our last Raise the Glass Against Rett in 2019. At that time, there were no treatments on the horizon. There was a clinical trial beginning for a drug called Trofinotide, and that's what we were raising money for. We're raising money for research. And I will tell you, in that time, Macy was a part of that clinical trial. She was, I think, one of like 187 girls in the United States that were a part of that trial. And I will tell you, I got a Facebook memory yesterday, four years ago to yesterday, was the first dose she received of Trofenetide, which is now called Debut. And it is now called Debut because it is FDA approved. It was the first FDA approved treatment for Rett Syndrome. And Macy changed history and was a part of that. And that moves me every single day, that we got to be a part of that. So now I get to say to these families, where five years ago, I said, there's no treatment and there's no cure. Today, I get to say to them, hey, have you heard of Debut? Make sure you ask your neurologist because there's a treatment now. Is it a cure? No, it's not a cure. Does it work for every child? No, it doesn't. Can every child take it? No, it's just like any other medication out there. Some are gonna work for some folks. Well, it may not work for others, but it is the first and currently the only that gives hope for more. And that was a door open. I mean, we kicked a door open for treatment for Rett Syndrome, but it not only kicked that door open for treatment of Rett Syndrome, it opened up the fact that there can be treatments. We can make these things happen, even in small, rare disease communities. So, you got to be a part of that, Dylan. Little did you know what movement that was back then. So, fast forward five years later, and there's lots of different things to help manage Rett Syndrome. So, there's seizure medications that help manage seizures. There's a G-tube that helps get nourishment in when a swallow isn't safe or a child isn't able to gain the weight they need. There's different help with breathing and different help with different complexities in Rett Syndrome. There's physical therapy and occupational therapy, speech therapy, hippo therapy, horse therapy, that helps kiddos gain better gait to be able to walk better. There's so many things to help manage, but we still yearn for a cure. We still yearn for more treatments. We want more. We're not done. We're not done.
Dylan Carnahan:It's really powerful that you are a part of that major milestone as far as that clinical trial and subsequent release of that drug. I think one of the biggest challenges for something is to go from zero to one, right? And so that's a very impactful thing. And as you've said, that opens the door. Okay, can we go from one to two? And what else can we do from there, right? But that zero to one, that's a very, that's a tipping point, if you will. So it's great to hear that you and Macy were able to be a part of that. What is the best way, the best way, for people to learn more about Rett Syndrome and the work you do?
Samantha Brant:Yeah, I will tell you. So, you know, worldwide, we are International Rett Syndrome Foundation. You can find us, our websites, www.rettsyndrome.org, and that's R-E-T-T, syndrome, all one word. You can go on our website, you can learn all about Rett Syndrome and what we're doing at the foundation to help families. You know, not only do we do top-notch research and we fund top-notch research from basic all the way through, but we empower families on top of that. You can't do research without families, and families need research. So it really is a two-prong mission. We help families every step of the way, whether that be newly diagnosed and walking through that to meeting them and helping them with their IEPs for their education, for their kiddo. Their connection in the community. Their, hey, how do I meet someone else? How do I talk to someone else? Who else has a kiddo similar to mine? I'm having this problem. We're able to connect families across the globe. And that's really, really special. But the other part is we connect families with research to put that in their hands. And it becomes a beautiful partnership that occurs between our clinicians and our researchers and our families. These are people that choose to do this work. They don't have to. They don't have to do this every day. Our Rett families, we have to do this every day. We don't choose this. So there's always a good correlation that has to happen between these researchers and scientists. To know who they're working for and working towards. And families are so grateful for their time. But I think sometimes families don't realize how grateful these scientists and researchers and clinicians are just as grateful for us as a family. And I think that's what our foundation gets to do. We get to be a part of both. We're really a one stop shop for both. And for my work, I get to wear many hats. Watching those light bulbs go off, watching those moments of connection between our families is truly something that I never thought I would be a part of. But here I am and I get to do it every single day. I get to lift those bricks off of family shoulders during some of their hardest times. It goes back to where they're every step of the way along this journey.
Dylan Carnahan:I'll be sure to include some of the resources that you've mentioned within the show notes for others to check out. Sam, I'm extremely grateful that you came on and that you shared and were vulnerable and shared the challenges and emotions that you've gone through and most importantly, that you spent your time with us. So again, thank you for sharing your knowledge and time today.
Samantha Brant:Yeah, thanks, Dylan, for having me. Thanks for being there, really, from the early stages with us. So we can't wait to see you at the raise a glass coming up.
Dylan Carnahan:That wraps up our conversation with Sam. We talked about known risk factors, the prevalence in women and men, and the recent pharmaceutical developments for Rett Syndrome. Go to this episode's show notes to see any resources Sam mentioned during our episode. And lastly, subscribe to the Simple Questions Podcast to get notified when our latest episodes are released. Thank you for listening. And remember to keep asking questions.