myFace, myStory

In this episode of myFace, myStory, host Dina Zuckerberg sits down with filmmaker Joseph Lingad and actor Corey Taylor for a conversation about visibility, vulnerability, and self-acceptance. Joseph shares how his personal experiences living with a facial difference inspired his upcoming documentary Don't Look Away, exploring representation and stigma in our society. Corey opens up about his journey through over 50 craniofacial surgeries and how he turned pain into purpose by pursuing writing, caregiving, and acting. Together, they discuss the importance of authentic storytelling, challenging assumptions, and embracing life unapologetically.  

On this month's episode of myFace, myStory, host Dina Zuckerberg speaks with award-winning actor, presenter, and disability advocate Adam Pearson. From standout roles in A Different Man and Under The Skin to his upcoming portrayal of Joseph Merrick in the film adaptation of The Elephant Man, Adam shares how he's using storytelling to challenge stereotypes, advocate for authentic representation, and change the narrative around disability in media and beyond.   Adam was nominated as Presenter of the Year at the Grierson UK Documentary Awards in 2016. As an actor, he has been nominated for Best Supporting Performance at the Gotham Film Awards and the Film Independent Spirit Awards. He has also been nominated for the likes of the Los Angeles Film Critics Association Awards, National Society of Film Critics Awards (US), DiscussingFilm Critics Awards, and UK Film Critics Association Awards.   Adam has been widely recognised for his award-nominated, supporting role in A24's A Different Man, directed by Aaron Schimberg and co-starring Sebastian Stan and Renata Reinsve. Adam also co-starred in the BAFTA-nominated film, Under The Skin, with Scarlett Johansson which was directed by Jonathan Glazer. His other film credits include Chained For Life, which was also directed by Aaron Schimberg.   Adam has spoken at a number of events for the likes of KPMG, the Health Innovation Summit, Public Service & Criminology Conference, and British Association for Counselling & Psychotherapy. He has also given a TEDx talk.   Adam is an ambassador for The King's Trust, Changing Faces and Us In A Bus. He also won a RADAR Award and a Diana Award for his campaigning work.   Adam has previously been named on The Shaw Trust's Disability Power 100 List, as well as being nominated for Celebrity of the Year at the Sense Awards.  

On this month's myFace, myStory podcast, host Dina Zuckerberg speaks with Paige Lauren Billiot, a birthmark advocate, model, and film producer redefining beauty standards. Based in LA, Paige uses her platform to create representation for those with facial differences, celebrating her birthmark as her superpower. Featured in Harper's Bazaar, Seventeen, and Glamour, she challenges societal norms and empowers others to embrace their uniqueness with confidence. Tune in for an inspiring conversation on self-love, advocacy, and the power of authentic representation.   TRANSCRIPT  00:01:34.618 --> 00:01:37.480 Hello, and welcome to My Face, My Story, 00:01:37.819 --> 00:01:40.100 voices from the craniofacial community. 00:01:40.921 --> 00:01:41.981 I'm Dena Zuckerberg, 00:01:42.042 --> 00:01:43.483 your host and director of 00:01:43.503 --> 00:01:45.343 family programs at My Face. 00:01:46.183 --> 00:01:47.444 Like many of you listening, 00:01:47.765 --> 00:01:49.344 I have a craniofacial difference. 00:01:50.165 --> 00:01:52.206 I was born with a cleft lip, 00:01:52.826 --> 00:01:53.807 a hearing loss, 00:01:53.986 --> 00:01:55.647 and no vision in my left eye. 00:01:56.709 --> 00:01:57.331 My Face, 00:01:57.370 --> 00:01:59.432 My Story is about people like us 00:01:59.512 --> 00:02:00.893 being seen and heard, 00:02:01.492 --> 00:02:02.694 about sharing stories 00:02:02.733 --> 00:02:04.015 within the craniofacial 00:02:04.034 --> 00:02:05.977 community and with others. 00:02:07.016 --> 00:02:08.758 This podcast episode is made 00:02:08.818 --> 00:02:10.259 possible through support 00:02:10.319 --> 00:02:11.920 from the Integra Foundation, 00:02:12.420 --> 00:02:14.223 committed to improving lives. 00:02:15.362 --> 00:02:15.943 By the way, 00:02:16.183 --> 00:02:17.044 whether you're watching on 00:02:17.104 --> 00:02:18.425 YouTube or listening 00:02:18.466 --> 00:02:19.926 through Apple Podcasts, 00:02:20.306 --> 00:02:22.147 click subscribe now and 00:02:22.168 --> 00:02:23.368 we'll keep you updated on 00:02:23.429 --> 00:02:25.730 future episodes so you never miss out. 00:02:27.320 --> 00:02:29.542 And if you're a fan of My Face, My Story, 00:02:30.062 --> 00:02:31.461 please rate and review the 00:02:31.502 --> 00:02:33.423 program on Apple Podcasts 00:02:33.883 --> 00:02:35.143 so we can get our message 00:02:35.242 --> 00:02:36.383 of inclusivity and 00:02:36.424 --> 00:02:38.985 empowerment to more people. 00:02:39.185 --> 00:02:41.585 Today, I am joined by Paige Villiat. 00:02:42.126 --> 00:02:44.765 Paige is a birthmark advocate, model, 00:02:44.925 --> 00:02:45.986 and film producer, 00:02:46.206 --> 00:02:47.806 creating global birthmark 00:02:47.866 --> 00:02:49.407 representation and 00:02:49.448 --> 00:02:51.627 awareness within the beauty, fashion, 00:02:51.748 --> 00:02:53.028 and media industries. 00:02:53.808 --> 00:02:55.289 She uses social media to 00:02:55.389 --> 00:02:56.569 highlight her birthmark 00:02:57.062 --> 00:02:59.462 with makeup, props, graphic design, 00:02:59.643 --> 00:03:00.823 and VFX. 00:03:01.663 --> 00:03:02.883 Her influence has been 00:03:02.984 --> 00:03:04.804 recognized in many magazines, 00:03:05.004 --> 00:03:08.045 including Harper's Bazaar, Seventeen, 00:03:08.246 --> 00:03:09.925 Glamour, and Women's Health, 00:03:10.605 --> 00:03:11.866 earning her a spot on 00:03:11.907 --> 00:03:13.206 Glamour's fifty 00:03:13.306 --> 00:03:14.587 Instagrammers you need to 00:03:14.627 --> 00:03:15.568 follow right now. 00:03:16.786 --> 00:03:18.105 When she isn't advocating 00:03:18.145 --> 00:03:19.806 for the birthmark community, 00:03:20.326 --> 00:03:21.366 she loves taking her 00:03:21.427 --> 00:03:22.948 forecast on walks in their 00:03:22.987 --> 00:03:24.989 strollers while expanding 00:03:25.049 --> 00:03:27.149 her chai tea latte palette 00:03:27.269 --> 00:03:30.389 and Scooby Doo collection. 00:03:30.430 --> 00:03:31.211 Welcome Paige. 00:03:35.951 --> 00:03:36.352 Hi, 00:03:36.572 --> 00:03:37.592 I really look forward to our 00:03:37.612 --> 00:03:38.312 conversations. 00:03:39.062 --> 00:03:39.622 Hello. 00:03:39.701 --> 00:03:41.524 Yes, I'm so excited to be here. 00:03:41.663 --> 00:03:43.025 When you asked me to join, 00:03:43.625 --> 00:03:45.325 I could not wait to have a 00:03:45.346 --> 00:03:46.167 conversation with you. 00:03:46.766 --> 00:03:48.489 I'm excited. 00:03:48.628 --> 00:03:50.810 So can you share a bit about 00:03:50.849 --> 00:03:52.230 your personal journey and 00:03:53.252 --> 00:03:54.473 how you came to embrace 00:03:54.492 --> 00:03:56.174 your birthmark as your superpower? 00:03:57.377 --> 00:03:57.798 Oh, man. 00:03:57.858 --> 00:03:58.079 I mean, 00:03:58.098 --> 00:04:00.180 that's I think any self accepting 00:04:00.199 --> 00:04:02.382 journey is quite the ride, I'm sure, 00:04:02.401 --> 00:04:04.963 as you know, and a very long one. 00:04:06.444 --> 00:04:08.626 I still feel like it's, you know, 00:04:08.665 --> 00:04:10.187 I'm still learning about myself. 00:04:10.247 --> 00:04:11.889 I'm still learning deeper 00:04:11.929 --> 00:04:13.810 levels of love and acceptance. 00:04:15.151 --> 00:04:18.052 But, yeah, I for most of my life. 00:04:19.713 --> 00:04:21.336 I would say up until, you know, 00:04:22.237 --> 00:04:23.338 a little outside of high 00:04:23.418 --> 00:04:24.439 school is when I started to 00:04:24.459 --> 00:04:26.661 get a little bit definitely 00:04:26.701 --> 00:04:28.504 more consistently comfortable with, 00:04:28.584 --> 00:04:28.863 you know, 00:04:28.923 --> 00:04:30.045 just kind of going outside the 00:04:30.064 --> 00:04:32.168 house without makeup just to run errands. 00:04:33.069 --> 00:04:35.290 I remember the end of high school, 00:04:35.670 --> 00:04:37.814 I stopped wearing like, you know, 00:04:39.278 --> 00:04:39.978 more full coverage 00:04:39.999 --> 00:04:41.420 foundation and just doing 00:04:41.439 --> 00:04:43.201 kind of like powder over the birthmark. 00:04:43.821 --> 00:04:45.322 So it was a very gradual 00:04:45.442 --> 00:04:47.903 process of accepting and 00:04:48.485 --> 00:04:49.665 then fully embracing. 00:04:49.985 --> 00:04:54.228 And how ironically life can 00:04:54.269 --> 00:04:55.310 be with having a birthmark 00:04:55.370 --> 00:04:56.009 on half of my face, 00:04:56.069 --> 00:04:57.151 I wanted to be an actress 00:04:57.271 --> 00:04:57.891 at a very young age. 00:04:59.012 --> 00:05:01.595 And I did that at high school. 00:05:01.634 --> 00:05:02.536 I was a performing arts 00:05:02.576 --> 00:05:03.877 major at Las Vegas Academy 00:05:03.896 --> 00:05:05.658 of Performing Arts International Studies, 00:05:05.678 --> 00:05:06.740 which was actually really, 00:05:06.759 --> 00:05:08.862 really fun and really great 00:05:08.901 --> 00:05:10.103 for the self-confidence and 00:05:10.122 --> 00:05:11.285 just being able to perform. 00:05:11.745 --> 00:05:12.826 I had my birthmark covered, 00:05:12.886 --> 00:05:14.168 but still being on stage 00:05:14.187 --> 00:05:15.348 and just being in that environment. 00:05:16.456 --> 00:05:20.702 And then when I moved out to LA in, 00:05:20.802 --> 00:05:22.084 very much the intention of 00:05:22.144 --> 00:05:24.067 being in front and behind the camera, 00:05:24.127 --> 00:05:24.887 always wanted to be a 00:05:24.947 --> 00:05:26.430 filmmaker to some capacity. 00:05:27.791 --> 00:05:29.634 And I took two years of 00:05:30.175 --> 00:05:31.196 trying to do the thing, 00:05:31.295 --> 00:05:33.117 trying to get an agent, the auditions, 00:05:33.137 --> 00:05:34.019 the managers, 00:05:34.500 --> 00:05:36.862 I'm trying to get into just short films, 00:05:36.901 --> 00:05:38.742 student films, whatever I could get into. 00:05:38.762 --> 00:05:41.144 And, you know, 00:05:41.204 --> 00:05:42.446 it was a very consistent 00:05:42.565 --> 00:05:44.387 pattern of confusion. 00:05:45.168 --> 00:05:47.689 And, you know, 00:05:47.769 --> 00:05:49.610 some of the same comments of just, 00:05:49.630 --> 00:05:50.612 we don't know where to put you. 00:05:50.651 --> 00:05:51.672 You're too distracting. 00:05:52.812 --> 00:05:53.072 You know, 00:05:53.132 --> 00:05:55.574 like we're very confused on like 00:05:55.615 --> 00:05:56.696 where to place you. 00:05:56.896 --> 00:05:57.096 Yeah. 00:05:58.317 --> 00:05:59.677 and I got you know I reached 00:05:59.898 --> 00:06:01.538 a threshold at a point and 00:06:01.658 --> 00:06:03.000 I got really frustrated at 00:06:03.040 --> 00:06:04.161 the process and I just 00:06:04.201 --> 00:06:05.000 realized you know what I 00:06:05.021 --> 00:06:05.841 just kind of have to make 00:06:05.882 --> 00:06:07.583 something on my own which 00:06:07.762 --> 00:06:09.163 really isn't that different 00:06:09.204 --> 00:06:10.584 of a story that I I think 00:06:10.665 --> 00:06:12.906 everybody in l.a ends up 00:06:13.065 --> 00:06:14.247 coming to realize at some 00:06:14.286 --> 00:06:15.648 point anyways that like you 00:06:15.708 --> 00:06:16.668 just you're gonna have to 00:06:16.708 --> 00:06:20.471 just kind of make your own stuff right 00:06:21.146 --> 00:06:24.408 So being really frustrated, I didn't, 00:06:24.867 --> 00:06:26.048 I couldn't make a film overnight, 00:06:26.228 --> 00:06:27.848 but I could take a photo. 00:06:28.389 --> 00:06:28.689 And I, 00:06:29.250 --> 00:06:30.470 that's when I started the Instagram. 00:06:30.509 --> 00:06:33.290 This was like mid-TwentyFifteen. 00:06:33.552 --> 00:06:34.331 I just, I felt 00:06:35.524 --> 00:06:36.624 really conflicted. 00:06:37.464 --> 00:06:39.045 I wanted so badly to be a 00:06:39.105 --> 00:06:41.906 representation in this space, 00:06:41.946 --> 00:06:43.846 but just also just in general. 00:06:44.887 --> 00:06:45.786 But at the same time, 00:06:45.846 --> 00:06:46.786 I was still s

On this month's myFace, myStory podcast, host Dina Zuckerberg is joined by Adele Capitella-Liu, a retired NYC teacher and a passionate advocate for the facial difference community. Diagnosed with Parry-Romberg Syndrome and having faced the challenges of breast cancer, Adele shares how her personal experiences have shaped her journey of resilience and advocacy.  As the administrator of the Adult Facial Difference Community on Facebook, Adele fosters meaningful connections and supports individuals navigating life with facial differences. Join us as Adele discusses the power of community, the importance of self-expression through art and poetry, and her mission to uplift and empower others in the facial difference community. PROGRAM TRANSCRIPT  

In this episode of myFace, myStory, host Dina Zuckerberg speaks with Celina Leroy, an artist, art teacher, and advocate born with a Port Wine Stain birthmark. Celina shares how her personal experiences have inspired her to create powerful portraits of individuals with craniofacial differences, such as birthmarks, cleft lip and palate, and Sturge-Weber syndrome. Through her artwork and accompanying video interviews, Celina seeks to raise awareness, end the stigma surrounding visible differences, and redefine society's standards of beauty.   - [Announcer] Welcome to "myFace, myStory: "Voices from the Craniofacial Community" with your host, Dina Zuckerberg. - Hello, and welcome to "myFace, myStory: "Voices from the Craniofacial Community." I'm Dina Zuckerberg, your host, and Director of Family Programs at myFace. Like many of you listening, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "MyFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click Subscribe Now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "myFace, myStory," please rate and review the program on Apple Podcasts so we can get a message of inclusivity and empowerment to more people. Today, I am joined by Celina Leroy. Celina is an artist, art teacher, and advocate. Born with a Port Wine Stain birthmark, Celina creates painted portraits of individuals born with craniofacial differences, including birthmarks, cleft lips and palates, Sturge-Weber syndrome, et cetera. She hopes that her work will shed light on this underrepresented group of people and end the stigma surrounding visible differences and disabilities. Along with each portrait, she gives a video interview of that person giving more context to their story and journey. Welcome, Celina. I really look forward to our conversation. - I'm so excited to be here. - Yeah. So can you share your personal journey growing up with a Port Wine Stain birthmark? And how did that experience shape who you are today? - Yeah, I was born with a Port Wine Stain on my chin, lip, and cheek. When I was a baby, I had like so many laser treatments to kind of reduce the color of it and the size. Like throughout my life, probably had like 90 or so laser treatments. - Wow. - Yeah, and then I had two kind of major surgeries on my lip to like reduce the size, because it's kind of larger on one side. And like with Port Wine Stains, it's a progressive lesion, so it gets larger as you grow. As any kind of like adolescence age, it will grow more. So that's why I've had those surgeries. So when I grew up, I always felt like pretty ashamed of my birthmark and really felt like I was different because of that and it's something that I should hide. So I like immediately like started wearing makeup and just kind of trying to cover it and blend in with other people. And I was always in the back of my mind like afraid that someone would notice, someone would see it and like just think that I was ugly or think that something was wrong with me. And it was like kind of like sad. I always loved making art since I was a little kid. And I wanted to create portraits of people with birthmarks. After I started going on Facebook and finding like support groups for people with Port Wine Stains, and I was looking at all these people and I was like, "Oh my God, like actually Port Wine Stains "are so beautiful." "They're like this red color, "and they're all different and unique "and they're like maps of color on the face." And I was like, "I should make a portrait series about this." 'Cause so many people feel like they deal with the same thing, like feel like that they're like ugly or something, so I wanted to use art to be like, "No, actually you're beautiful "and like you're a masterpiece." - Right, I love that. So I have a good friend who wrote a book about how she hid her difference for over 20 years, and then she came sort of out of hiding and how freeing that is. Was there a certain point in your life where you felt like you didn't have to hide anymore, that you could be who you are? Or maybe you still haven't quite gotten there, but I was just wondering. - Yeah. Actually like really recently, I would wear makeup like all the time and like only in rare situations would I not wear makeup. But this school year, so I'm a teacher. And this school year, I didn't wear makeup like the first days of school and like throughout the year. So it's been literally like a month. Something about like the kids seeing me without makeup. 'Cause you know, kids are like, can be kind of ruthless. And I like want to be putting up like this front that I'm like a teacher, like professional. Like I don't want them to come at me saying like, "Oh, you look weird and you're like..." And I still have those negative thoughts in my head. Even though I do all this work to try to like not have those thoughts, I still have them. This month, I haven't been wearing makeup. And I actually just brought my students to my art show today. - Amazing, I saw a video of it, yeah. - And I was talking about my birthmark and stuff. And like they were so supportive and sweet and loving. And I was like, hmm, like I didn't have to be so always like going to the negative of like how people will perceive me. - Yeah, it's hard to get rid of those negative thoughts, isn't it, especially when you have grown up with it somehow. - Yeah. - Yeah. - I think in some ways, that is one of the biggest challenges. So can you describe the process of creating a portrait of someone with a facial difference? And how do you connect with the individual to capture their story? - Yeah, so at first, I was just on Instagram, and I was like adding people and finding people. And then people would like request, like send me photos of themselves. And then I would paint them and talk to them and like post the process of making the painting. And they'd be so excited and it was like really great. And then I kind of like wanted to move on to like more serious work. So if the person lived in my area, like in New York, I would meet them and take their photo, and paint from that, and then also doing an interview with the painting. So like along with every painting, I'd put an interview. Because I think that it's important not only to see what they look like, but to hear their story and their journey. Because we're more than just our physical appearance. We're like a human that goes through so much. And it's interesting how like we're all so different but then have this like similarity of like looking different, and like feeling, and like just our journey to like self-acceptance. So yeah, I think that it's like really cathartic and nice. And like I get a lot from it like emotionally just like hearing everyone's stories and like connecting on that level. - When did you know you were an artist? - Oh, I grew up in a pretty creative family. Like my grandfather's an artist. Like my dad is like an antique dealer but went to art school. so everyone was like very encouraging of my art making. And then, because I was like pretty good at it at like a young age I guess, or I thought I was good at it... Everyone told me I was good at it, so then I was like, "Oh, this is my thing." So I like went to art school. I always loved drawing. And I always felt like, "Oh, that was like my talent," you know? So, that's fun. - Yeah; no, you are incredibly talented. And yeah. So how do you choose the individuals you paint? And how do their personal stories influence your artistic process? Where do you find them? How do you choose them? - Yeah. Well, a lot of it's just like, "Oh, I have an art show. "Like I need to meet people and like make it happen." Like and who's available and who's here. Some people, I think it's a process of... It's like a pretty big step for some people to put their face out there. Like, some people I've talked to and they wanna do it. But then somehow they flake and like they don't come through. I don't wanna be like, "Oh, you're flaking." But it's like, I think that it's hard for someone to really be vulnerable. And like I am asking a lot of them. So like putting their face out there and then also talking to me about their story, not everyone's like comfortable doing that. So the people that are, like feel like they're at that moment in their life and they're willing to talk about their birthmark or their facial difference, like being vulnerable, and they're in New York City. But I also started traveling and meeting people out like side of the country. So I took some pictures in LA when I went there in the spring. I went to France and England over the summer. And so I met up with people with birthmarks and took their photos. So hopefully, I'll be making paintings of them soon. Like it does take a while to make a painting. So there is like a kind of time delay with that. But I'm trying. - So I had the pleasure and the honor of being photographed and then having you do my painting and interview, which is pretty amazing. You are so incredibly talented. - Thank you. So I'm excited to see it. So I have to thank you. So as an art teacher, an advocate, what do you hope your students and followers learn from your advocacy work and your artistic creations? - Yeah, like it was interesting like today bringing them, the kids, to the show. I was like very stressed out the whole time thinking that they were like not gonna be into it or they're like, "Oh, it's too long." Like all those negative thoughts. I was like, I bit my nails. I was like so stressed. And then at the end of it, like Rick, who runs Positive Exposure, he was like, "You're doing so good. "Like th

On this month's myFace, myStory podcast episode host, Dina Zuckerberg, is joined by Amy and Lazer Schefer, a dynamic mother-daughter duo who have turned their personal challenges into a mission of advocacy and support for the craniofacial and rare disease communities. Join us as we explore their inspiring story of resilience, the challenges they've overcome, and the impact they continue to make on the lives of others.   - [Announcer] Welcome to "My Face, My Story: "Voices from the Craniofacial Community," with your host, Dina Zuckerberg. - Hello, and welcome to "My Face, My Story: "Voices from the Craniofacial Community." I'm Dina Zuckerberg, your host and director of Family Programs at My Face. Like many of you listening, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "My Face, My Story" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click "Subscribe" now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "My Face, My Story," please rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. Today I am joined by Amy Schefer and her daughter, Lazer. Amy is a passionate advocate for the craniofacial and rare disease communities. She is Lazer's mom and a director of Advocate Angel, an organization that helps guide families through the medical maze. She shares her intense journey as a medical mom, navigating with Lazer through dozens of surgeries and challenges to engaging in pioneering research efforts and advocating tirelessly in one-on-one family assistance endeavors and legislative action. Lazer is a 20-year-old patient advocate and public speaker with Goldenhar Syndrome. She has appeared on the TLC series "Two in a Million: A Face Like Mine." She has also appeared on numerous podcasts and radio interviews and has moderated panel discussions at Seattle Children's Hospital. Welcome Amy and Lazer. I really look forward to our conversation. - Hi. - Hi. - Hello. - Us too. - Yeah. So, Amy, can you share the early days of your journey with Lazer's diagnosis and what were some of the initial challenges you faced as a mother navigating the medical care system and her care? - Well, we're country folk, and one of the biggest challenges that we had is we were at a teeny tiny hospital, nobody had ever heard of Goldenhar. We had a great emergency room, I mean NICU doctor, who stayed up all night trying to figure out what condition this may be. But the fact that we were farther away from the central areas where medical care happened made it more difficult, And then early on, we also, we knew we needed to get to a craniofacial team. - Right. - The team that was assigned to us through our insurance was a not well-known team. They met once every three months. They brought, they brought somebody in who said, you know, who was a professor emeritus, you know, who said, "Wow, this is really, "you won't find a kid like this very often." And that was kind of like- - Wow. - Their amassed wisdom, and it was hard... to get referred to the top team in the state, and the top team in the state was in disarray. They kept losing their funding. So, one of the biggest challenges for me, aside from not knowing ahead of time, despite all the ultrasounds and stuff, that Lazer was gonna be different, one of the biggest challenges was just getting situated in the right medical team so that the quality of care could be better than what we started with. - Mmm, right. And- - Yeah. - So you did not know, and did, and was there anybody else in your family that you knew of that had Goldenhar or? No, so this was a total- - No, the one and only. - Surprise for you. - Yeah. And luckily my dad was a psychiatrist, so he went to medical school. So he asked all of his med school buddies, "What do you do in a case like this?" And they said, "Find a craniofacial team." That was pure luck- - Right. - And not something that most people have. And, you know, some of the reason I just became an advocate is because... the information that families have access to is so scattershot. - Right. - And if you don't have that information, your results are way different. And not only that information, but lots of other kinds of information. So- - Mm-hmm. - We also just didn't have really great facilities, we didn't have great home health agencies, we didn't have, you know, it was, I had to learn how to fire people who were coming to take care of Lazer who- - Right. - Who, you know, didn't do as good a job as they needed to. - Right. - Lazer had a trach and a G-tube at the beginning, and other things, and it, you know, substandard care doesn't cut it. - Right. - So, there are a lot of challenges, and you know, common sense, you would think, okay, when any person is born, they're, you know, the medical system will wrap you in its arms and all will be well, you'll know what to do, you'll be speaking with the right people, and it's kind of, no, you actually have to take some action on behalf of yourself and your family. - Right. - To get that, so. - So, Lazer, growing up with Goldenhar Syndrome, what was some of the most significant challenges you encountered and how did you find the strength to overcome them? - I have a couple different answers for this, but one is, which is a very common answer, is just learning how to deal with people's reactions to you. - Right. - And I had a couple of like really, really hard moments that triggered like a whole bunch of years' worth of not wanting to be seen in public or like trying to literally hide the left side of my face. - Mm-hmm. - Because that's what I considered to be the more different side. Then, another one of the harder things has been dealing with my face changing so many times. - Mm-hmm. - It's like I get used to the way my face looks and then I have another surgery that is ultimately, of course, for the better, like betterment of my health, or at this point, I'm just now at the point where I can, I'm getting surgeries to more even out my appearance as well. - Right. - But learning to love each face that has come into my life over the 20 years has been one of the more interesting challenges, let's say. - Yeah. - And one of the main things that has like helped with that, honestly is just taking time. - Mm-hmm. - It took a lot of time for me to really start to, like, listen when my mom and like... my other close family members would say that, look, you really are beautiful. And I would always brush it off like, "Oh, no, you're just saying that you're my parents, "come on, shush." - Right, right, right. - One thing that ended up really helping with that was I got really bored in 2020, you know, quarantine time. - Mm-hmm. - And I was on TikTok a little bit before that, but I started just posting a whole bunch of different, like, content regarding what it's like to live with a facial difference. - Mm-hmm. - And a lot of them were more funny, but some of them were really like expressing how it feels to look different. Even though I did, I have gotten quite a few like nasty comments over the same years, just sharing, sharing that part of myself really helped ground ground me in the sense that I, in the knowing that I am different and that's not a bad thing. - Right. - And different is beautiful. - Exactly. And when you talk about, Lazer, about, you know, having surgeries in your face changing each time you have surgery, that's something that I've heard quite often from individuals in the craniofacial community, so I don't think you're alone in that. So you both have touched on it, but advocacy has become a significant part of both your lives. And so I'm wondering what motivated you to turn your personal experiences into a mission to support others in the craniofacial and rare disease communities? - Well, I can say for me, naturally people started referring people to me because I had bushwhacked a path through the jungle with a machete, and they were like- - Right. - "Talk to this lady, figured it out." So I naturally was doing that and I was passionate about it. And even to the extent where I had some medical professionals referring people to me, 'cause I could say things they couldn't say. Like, in this previous state we lived, G-tube food, once a kid had a G-tube, the doctor was legally responsible for failure to thrive. I'm doing a little quote marks off the screen, and failure to thrive in Lazer's case was, they were putting formula through the G-tube that was a bunch of chemicals and that didn't, Lazer's body didn't like that. - Right. - It's kind of a simple matter. But the doctor had responsibility... Like, in other words, if you have a non-G-tube food kid, you can feed them, you know, Velveeta and Cheetos and, you know, gummy bears and nothing else and nobody gets in between you, not that you should. - Right. - But... if you take your kid off of the prescribed G-tube food, you can have your kid taken away in the state that I was living in, so it started at a very young age, 'cause this medical person from DSHS couldn't tell people, "to use goat milk... "or use the breast milk bank." - You know, so she'd say- - Right. - "Talk to Amy." So, because that's how Lazer began thriving. - Right. - You know, just having natural food, so I worked out a special thing with the dietician to basically look the other way for a couple weeks. And if Lazer's weight went up, then we could, you know, have her look our way again. You know, these are the kinds of things, of course I would wanna help anybody that was, you know, right after me in the same shoes that I was in. - Right. - You know, and I think parents are just li

On this month's myFace, myStory podcast episode host, Dina Zuckerberg, is joined by Chelsey Peat, born with Sturge-Weber Syndrome, and recently published author of her memoir, Two Sides to a Face. She will share her journey from childhood, marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial differences community. She hopes to serve as a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized due to their physical appearance.   - [Announcer] Welcome to "myFace, myStory, Voices from the Craniofacial Community," with your host, Dina Zuckerberg. - Hello and welcome to "myFace, myStory, Voices from the Craniofacial Community." I'm Dina Zuckerberg, your host and Director of Family Programs at myFace. Like many of you listening, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, quick subscribe now, and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "myFace, myStory," please rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. Today I am joined by Chelsey Peat. Chelsey was born with Sturge-Weber syndrome, a rare condition that led to multiple surgeries, including a lifesaving brain surgery as an infant. Despite doctors predicting significant limitations, Chelsey has defied these expectations throughout her life. She graduated from high school and college, and she's currently pursuing a degree in sociology, alongside a certificate in diversity, equity, and inclusion. With nearly 40 years of personal experience living with a facial difference, Chelsey has faced and overcome numerous challenges, including discrimination and stigmatization. Her deep understanding of these issues is reflected in her work with various organizations where she educates and advocates for individuals with facial disfigurements, differences and disabilities. Chelsey's debut publication, "Two Sides of a Face," offers an inspirational narrative of her life. This memoir details her journey from childhood marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial difference community. The book explores themes of self-acceptance, self-love and resilience, highlighting pivotal moments that shaped her identity and empowered her to embrace her imperfections. Through personal anecdotes and her role as a mentor and public speaker, Chelsey's story in "Two Sides of a Face" is not just about overcoming facial differences, but about transforming adversity into advocacy. Welcome, Chelsey. I really look forward to our conversation. - Hi. - Hi. So glad you can join me today. - Thanks for having me. - You're welcome. So can you share with us the moment you first realized that your facial difference would significantly impact your life? - I wouldn't say it was an exact experience. Growing up, I think everyone that grows up with a facial difference, you kind of just, you know that you're different once you're old enough to just, you just know. - Right. - But definitely going to school and those younger years, there was definitely times where for sure there were the points, the whispers, the stares, the awkward moments, you know, awkward conversations with grownups, noticing people looking a little too long, you know, all those awkward. Yeah, those moments where it was just less than respectful. - Yes. I can relate to that somewhat. So for those that don't know in our audience, can you tell us about Sturge-Weber syndrome and how rare it is? If you know. - Of course. Sturge-Weber syndrome happens approximately one in 50,000. Now kids nowadays can, I think it's one in 10, can be born with a birthmark of some kind. But Sturge-Weber syndrome is far more complex. Everyone always kind of takes notes when you say syndrome, and they automatically assume that that means we have some sort of disability or learning development, when that's not the case. It just means syndrome multisystem. So I don't have a regular birth mark. I have a hemangioma or port-wine stain. It goes far beneath the surface of the skin. And it interplays with blood vessel involvement through all the crucial organs and tissue on, for example, with me, in my eye, my brain, throat, sinus passages, ear canals, all that fun stuff. - Wow. - Yeah. - I did not know that. So how many surgeries have you had? - Well I had my one major brain surgery as a baby. I have had multiple eye surgeries for the glaucoma in my left eye, and I have had, oh, probably close to 100 cosmetic procedures on the birthmark. - Wow. So what is the most challenging thing growing up for you? What was the most challenging? - Trying to fit in, trying to make a friend, trying to have that inclusive aspect, you know. We, of course, at least for myself, you know, we were growing up having shows tell us, you know, everyone, if you look alike, you get along. And knowing, you know, that was never going to be possible for someone like me. It was kind of growing up realizing I wasn't gonna be that sweet princess that gets her prince, like all the movies told me that I should be. If I'm pretty, I'll get that magical kiss and I'll get my happily ever after. And you know, it's that instead you're siding with the bad guys in the movies because you understand their tragic backstory. You know, you kinda understand the whole aspect of everyone, all the Disney characters that were getting pushed to the shadows or, you know, sent to the outcast, you know, aspect. It was, yeah, you connected more with that. And I found myself, you know, "Phantom of the Opera," "Hunchback of Notre Dame," anybody with a scar or a burn, you know, I didn't like the heroes in most movies because I thought they were just self-entitled, you know, pretty people. - Right. Right. - It was, you know, more of those, oh my goodness, that poor person, you know, they went through this horrific thing. Well, they're the bad guy because they look different. So I must be a bad guy. I must be a villain. And yeah, it was having to try and break free of that. - So how did all of that impact your self-identity, self-esteem, especially as a teenager? 'Cause that can be really hard, right? I mean, for anybody, but especially with a social difference. - Yeah. The teen years were hard. I can definitely agree there. It was, you know, I tell a lot of people that's probably the hardest battle, especially for someone with a different or of disability, is the battle of self love. You know, you're basically every day getting up out of bed and being told by the world around you that you don't belong, you will never succeed, you aren't pretty, you know, things won't come easy. And it's trying to kind of break apart from all of that, push it all away and go, actually I'm not normal, yes, but my journey is gonna be far more exciting. So it was kind of that aspect of self-love and going, I get to have a far more exciting journey. It's not going to be like everyone else's. Instead I get to do things I know for a fact people look at me at awe with and go, "Wow." And, you know, using that more as motivation than you're a scary monster go away. - So do you have a specific example of a story where you felt especially isolated or misunderstood? - I can definitely, I can think of several, but I know for me, one bad example was, I grew up just perfectly, elementary school started one year and I'd already been struggling a little bit with bullying. And unfortunately a Batman movie got released. And it just so timed, yeah, it just so timed perfectly that the bad guy was the infamous acid-burn survivor Two-Face. - Oh wow. - And I remember the previews. I remember looking at him and connecting with him on a level, going, "I look like him. This is exciting." But then realizing that's not a good thing. And having the kids at school, the ones that had gone and seen the movie, you know, run up and start calling me that and with fingers and, "She's so bad." You know, "Oh, where's Batman?" And having that whole negative aspect of, "Yeah, you're the bad guy, we don't wanna play with you." And, you know, struggling with that for sure. Yeah. - So how did you deal with that? I mean, it's interesting because I talk to kids all the time when I go into schools and I try to tell them what they can do if they're faced with this. But how, I mean, how did you address it or deal with it? Or did you? I mean... - I have to bless my family at this point because they raised me so strong and resiliently. And I think that's such a crucial aspect is, you know, once you have a child with a difference, it's not only exciting that you've, you know, educated yourself and all of that, but it's also learning those great advocacy techniques so that you can start teaching your child how to educate and, you know, kind of jump in and say, "Hi," and start that conversation and make people see that we're not scary and all of that. And I know my mother, I bless, you know, I'm thankful that I got her as a mom because she taught me very early, you know, don't worry about the staring. Don't worry about the ogles. Walk up, say, "Hi." Start the conversation, let them touch it if they want to, you know, let them talk to you. Let them see that you are completely normal. You just have a few extra blood vessels. And that was me on the school playground, "Hi, I'm Chelsey. Wanna go skipping, wanna go play, wanna go do something?" And yeah, I still dealt with some people that were extremely awkward and couldn't handl

On this month's myFace, myStory podcast host Dina Zuckerberg is joined by David Cohen, recipient of the 2024 myFace Courage Award. David talks about the dark twists on his journey of hope to acceptance of his life with Pierre Robin Sequence to who he is now. He shares what he thinks should be happening to support children and adults in the craniofacial community. Dina Zuckerberg: Welcome to myFace, myStory: Voices from the Craniofacial Community with your host, Dina Zuckerberg. Hello and welcome to Dina Zuckerberg: Voices from the Craniofacial Community. I'm Dina Zuckerberg, your host and director of family programs at myFace. Let me tell you a little bit about myself. Like many of us in the community, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. myFace, myStory is about people like us being seen and heard about, sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click subscribe now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of myFace, myStory please rate and review the program on Apple Podcasts so we can get a message of inclusivity and empowerment to more people. As we begin National Craniofacial Awareness Month I'm very excited about my guest today, the recipient of this year's myFace Courage Award. David Cohen was born with Stickler's Syndrome. One of the primary symptoms of Stickler is Pierre Robin sequence, a rare genetic disorder that stunts the growth of the lower jaw causing the person difficulties with swallowing and breathing. By the time David was 10 years old, he had undergone more than 10 craniofacial surgeries to correct this issue. David, welcome to myFace, myStory. David Cohen: Thanks for having me, Dina. Dina Zuckerberg: Yeah. So David, you've been on a very long what we like to call a journey of hope, which includes not taking no for an answer when the US Navy turned you down for service. So can you share with us, David, your earliest memory of knowing you had Pierre Robin sequence? David Cohen: My earliest memory is probably, and this is thanks to the capturing of it when we did myFace video, but it was probably my second jaw distraction surgery when I woke up in the hospital. Dina Zuckerberg: And can you say a little bit about what that was and what that was like? David Cohen: I was about eight years old, if I remember correctly. It was my second jaw distraction surgery. And at that time in my life, honestly, the biggest challenges were the mental health aspect and the isolation that came with it. I remember being in second grade and always being taken out of class, being sent back to school after the surgeries with jaw distraction devices and people, especially the other kids not understanding what was going on. I wasn't able to play with other kids my age. So the isolation that comes from that was probably the biggest challenge. But I had a loving family and I was lucky enough to have the incredible angelic team of doctors and nurses that I had. So we get through it. Dina Zuckerberg: So what were some of the challenges you faced in school? Did kids bully you? Did they stare? David Cohen: Absolutely kids bullied me. At eight years old, people don't understand what compassion is. People don't understand what looking past physical appearances looks like. So having metal devices on your head, it just calls me back to a specific memory when I was in a playground in Central Park and kids kept their distance noticeably saying that I had lasers on my head, looking like an alien. And it's incredibly isolating, especially for a child that young when you don't understand end that it's not your fault and you internalize it. So it creates a bunch of shame messages that become part of your being. And also there's a lot of internal resentment both towards yourself. For me, resentment towards my family and towards, especially my mother as an older kid came up like, why was I born this way? And I wasn't even able to process that and that didn't even come out until I was 24 years old, which is how old I am now. So it really does create, using a building reference, it creates a building on a very, very rotten foundation that it takes a lot of work to clean out and rebuild. Dina Zuckerberg: So how do you think those experiences shaped your identity as a person? David Cohen: Well, it's still an emotional journey, and it is very much about resilience and that the challenges that I had as a child have given me some of my best, but also some of my worst qualities. I'll start with the worst, so I can leave the note on a positive one, but I was very emotionally immature and I'm learning now how to properly handle my emotions also back then and until very recently, I felt like I was a burden and I was just work for the people around me. And I am starting to learn that that's not true. We need to accept who we are. We need to accept that our craniofacial differences make us assets, not liabilities, which I'll touch on in a little bit with the military, but we need to realize that it's who we are, and that's nothing to be ashamed of. That's something I'm still working on now. Dina Zuckerberg: Yeah, I can relate so much to what you're talking about in terms of the resilience and how, I think because of our experience, we had to constantly, I don't know if fight's the right word, but to push ourselves in a way that I think others outside of the community may not have to do in the same way always. David Cohen: Absolutely. Dina Zuckerberg: And I think that it is so much more about the emotional. I mean, somehow for me, the surgeries, it was sort of less about the surgeries, but more about the emotional piece, the social emotional piece that we have to contend with, I think in a way that, yeah, others don't. David Cohen: Surgeries are physical, surgeries are physical pain. They are tangible. They are finite in time, and they pass. When you heal, you stop hurting. It's over. The emotional piece is the untangible, the emotional piece, the incomprehensible, because it's not visible. For the listeners who have seen the video that was aired at the gala where I was presented with the Courage Award, I touch on a piece of self-harm. I started self-harming when I was 10 years old. And the reason why I started self-harming is because I was no stranger to physical pain because of my surgeries. Whereas the emotional pain that we were dealing with, that I was dealing with was uncomfortable. It was strange to me, and I didn't know when it would end. So a lot of people who self-harm, the reason why a lot of people self-harm is because it takes an emotional pain and converts it into a physical one, one that's tangible, one that you have control over. And that was one of the biggest things that I had to kick. And one of the biggest things that was detrimental to my self-esteem was the fact that I was still self-harming. And while it helps deal with the emotional pain, it also reinforces it. So in order to stop, in order to help yourself heal, you first have to let go of those negative patterns that reinforce that negative pain. Dina Zuckerberg: Right. Yeah, that makes a lot of sense. So how did your family, because I really believe that when you have a child with a craniofacial difference, it does impact the whole family, including the sibling. And I know you have a sister. How do you think it impacted the rest of the family? David Cohen: So my sister was born when I was six years old. Part of that resentment piece that I touched on earlier, especially if the sibling does not have a craniofacial difference and is born, as I like to a boring normie, it creates that resentment towards your sibling as well. For me, what it looked like was when my sister was born without a craniofacial challenge, to me, when my parents now are paying attention to this seemingly perfect newborn baby, that gave me the message that I only get the attention when I'm sick. I only get the attention when something is wrong with me, because at that point, I wasn't going through surgeries. And then to reinforce that message when I was eight years old and I had my second jaw distraction surgery, the attention went from my sister straight to me because we were doing the video, I was in and out of hospital. So that sort of was the nail in the coffin for that specific shame message. It also created a lot of resentment towards my sister because she, to me, to the six-year-old me, she was the one who took away the attention, the love from my parents. And the reason why it's stronger for people in the craniofacial community is because the attention that we need is so much more because there's a medical aspect to it. So the delta between the attention that you have and the attention that you don't, between, to boil it down into simple terms, sick and healthy is huge. And when you throw a sibling's birth into the mix of that, that is an existential factor that is, for us, makes it very easy to just zero in on that and use that as the cause of that [inaudible 00:12:59]. And in turn, to go back to your question, Dina, in turn, that causes a lot more stress on the family because now there's a innate sibling rivalry that it's not solvable by an existential solution. I mean, my relationship with my sister only started getting better when I left for college at the age of 17, the better half of 17 too, I was almost 18 when that happened. And we have a lot to work on. There's 18 years, or rather 12 years of trauma to work on that, that we need to sort of unbuild and rebuild. Dina Zuckerberg: Yeah, I think trauma is very real for people especially in the craniofacial community, and it's something I think about often how that impacts so much of your identity. Yeah, so

On this month's myFace, myStory podcast episode, host Dina Zuckerberg brings you an inspiring conversation with Megan Gaydosh and Tiffany Kerchner. Both Megan and Tiffany have turned their personal experiences with facial differences into powerful advocacy work, promoting self-love, acceptance, and awareness. Together, they discuss the importance of visibility, advocacy, and support for those with facial differences and disabilities. Their stories highlight the strength found in community and the transformative power of embracing one's uniqueness. Tune in for an insightful and uplifting episode that celebrates resilience, courage, and the belief that we are truly stronger together. - [Announcer] Welcome to "myFace, myStory: "Voices from the craniofacial community." With your host, Dina Zuckerberg. - Hello, and welcome to "myFace, myStory: "Voices from the craniofacial community." Whether you're watching on YouTube or listening on Apple Podcasts, click subscribe now so that you'll never miss a future episode. And if you're a fan of "myFace, myStory," rate and review the program on Apple Podcasts so that we can get a message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. Today, I will be joined by Megan Gaydosh and Tiffany Kerchner. Megan, a former special education teacher, is now a birth doer. She loves to sing and write song parodies to inspire self-love and acceptance. She was born missing the seventh cranial nerve on her left side. While having a facial difference once held her back for pursuing her dream of becoming a singer and actress, she now confidently affirms that anything is possible and that differences only make us more of who we are. Tiffany is a nurse by day and a facial difference advocate on social media. She uses her platform to educate and spread awareness for the social injustices that her facial difference community faces every day. She was born with a rare neurological disorder called Moebius syndrome, which causes the right side of her face to be completely paralyzed. In her spare time, she enjoys reading, hanging out with her dog and cat, and tending to her houseplants. She believes it's time to break beauty standards and showcase more individual with physical differences, disabilities, and other medical complexities. Welcome, Megan and Tiffany. I really look forward to our conversation. - Hi, so happy to be here. - Yeah. - Hi, thanks for having me. - Yeah, so let's get started. Megan, can you share a bit of your personal journey of growing up with a facial difference? - Yeah, like you said, born paralyzed on my left side, missing a facial nerve. And it was always something that I felt needed to be fixed or was always hoping for some surgery or something that would make me feel and look normal. And in my teens, I did have a two-part nerve graft surgery where I did get some more movement on my left side. But I found that even having surgeries that still was not going to look like most people, and that even having those surgeries brought more questions and comments about scars and how long is it gonna take to smile normally and just kind of added some extra layers of insecurity, actually. But I'm glad that I did it because I think I probably would have wondered what if, if not. But I think in realizing that my face is going to be different for my whole life, it felt kind of crushing in my teen years and then into my like adult years, making connections with my family and with other people with facial differences and finding that community and seeing them as so beautiful helped me be able to then see that in myself and just sort of completely reframed how I see my difference. Like now I feel like it's kind of like a superpower, like I can make a difference with my difference instead of feeling less than because of it. - It is freeing, right? I mean, when you can just be out there and sharing who you are without needing to hide it or being uncomfortable with it. And I think it's definitely a journey. So Tiffany, I imagine you can relate some and can you share with us your personal journey? - I feel like I should be talking about how traumatic my childhood was because there is the trauma of being hospitalized frequently. There is the trauma of the negative stigma against us and going out in public and then being bullied in school. But I was a pretty happy child despite everything. I think between the ages of two and 16, I had 13 surgeries. Despite all of that, I was still happy and I did still as happy as I was, I did have that shame about my appearance. I started growing my hair out and I started wearing it a certain way so that it wasn't as visible when I was out in public. And like Megan said, I would hope and pray like one day I'd get a phone call like, "Hey, we're gonna do the surgery "and you're gonna look like everybody else." And that day never came. And I carried that shame with me. And I think just when I started getting like more onto social media and I started seeing more people with facial differences and I'd be looking at them and I'm like, "Wow, they're so beautiful. "Like look at that woman, she's so beautiful." And then one day it clicked and it's like, "Well, if she's beautiful with a facial difference, "why can't I be beautiful with a facial difference?" And then I just started seeing my difference as this, I almost feel like it's a gift because it's made me the person I am. And it's given me this community of people. It's given me a lot. - I always say it, right? There's power in the share story and knowing you're not alone. And when you find that community, it really does make a big difference to realize, "Wait, I'm not the only one that felt that way. "I'm not the only one that thinks this way." - Yes. - So Tiffany, why did you want to become a nurse? - As I said, I spent a lot of time in hospitals, in doctor's offices. When I'd have surgery, I'd spend a couple of days up to like weeks at a time in the hospital recovering. And some of my surgeries, I would have drainage tubes coming out of my head and face area or wherever they operated on. And it would just make my hair this like matted mess and just from laying in the hospital bed. And it was the day I was being discharged and I had my nurse and her name, I still remember her name was Brittany and she was wearing a butterfly on her shirt. And I will never forget her. She came in to go over the discharge paperwork with my parents. And then she said to me, "Why don't we go take a shower "and I'm gonna fix your hair "so you can look really pretty to go home." And she washed my hair and she put my hair in braids. And I was like, wow, like she didn't have to do that. Like I know how busy her job is. I know she has more important things to do yet she took 20 minutes out of her day to make me feel good. And that really inspired me to want to do the same thing for other people. - Megan, I know you were a special education teacher and now you are a doer. If, I don't know if it did, but did your facial difference influence your choices? - Yes, because I really wanted to empower kids with disabilities. And it was sort of in that job where I did kind of start to make the shift of like, 'cause I would talk to my students and tell them, anything is possible. You can do anything. I would like show them slideshows of different people with disabilities who are famous. We would have these conversations of like, you can do anything that you want to do. And then I would kind of internalize that and be like, why can't I tell that to myself? 'Cause I definitely haven't done the things that I wanted to do, because I felt like that was not possible looking the way that I look, to audition for something or to put myself on stage. It was just always so terrifying. So I feel like in special education, it kind of helped me send that message to myself. And I did really, really love being a special education teacher. And then I just had my own children and found I did not have the time. I didn't feel like I could do both well or have patience for my own kids at the end of the day. And so that's kind of how I shifted to the doula role, because no matter how many babies I have, I will have baby fever. And it kind of helps me get the baby fixed. And in giving birth to myself and being postpartum, I really thought that I knew what to expect and realized I had no idea. And just wanted to help other women have an easier time through that process. - How did your journeys lead you to become advocates now? And was there someone or something that inspired you to want to share your story and messages with others? - Started for me on TikTok. It was about three years ago. And I was just scrolling, staying up late. And I just thought, there really is something for everybody here. I wonder if they're, I just searched facial paralysis, facial differences, and I just found multiple people in the community. And I just had this big aha moment of like, okay, these are my people, I want to join them, I want to do this too. And then yeah, the next day, I just started posting about my story. And I had posted before, but nothing about my face or my story of living with a facial difference. And yeah, finding that community kind of made it feel like a safer space, like I wasn't alone. Even if it didn't go well, I had these people in my corner. And the more I've done it, the more connections I've made. And like Tiffany, it's one of my, we call each other soul sisters. Because we have just so much in common and can relate to so much with each other. And yeah, it's just really cool

This month on the myFace, myStory podcast, Dina Zuckerberg welcomes Melissa Tumblin, a passionate advocate for the hard of hearing and deaf community. Melissa, the founder and Executive Director of Ear Community shares her remarkable journey—from navigating her child's microtia and atresia diagnosis to leading pioneering research efforts and advocating tirelessly for legislation like Ally's Act.   - [Announcer] Welcome to "myFace, myStory: "Voices from the Craniofacial Community," with your host, Dina Zuckerberg. - Hello and welcome to "myFace, myStory: "Voices from the Craniofacial Community." Whether you're watching on YouTube or listening on Apple Podcasts, quickly subscribe now so that you'll never miss a future episode. And if you're a fan of "myFace, myStory," rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. Today, I will be joined by Melissa Tumblin. Melissa Tumblin is the founder and Executive Director of the Ear Community Organization and the Microtia and Atresia Support Group on Facebook serving the microtia and atresia community. She's an advocate for the deaf and hard-of-hearing community, and a hearing health activist, and assists on many boards and councils including the NIDCR, National Institutes for Dental and Craniofacial Research; the Friends of the CHHC, Congressional Hearing Health Caucus; and on the advisory board for a biotherapeutics company working on 3D printed regenerated ears. She has presented accredited presentations for audiology, educational organizations, and has also presented at many hearing-device-manufacturer meetings, microtia and atresia surgical conferences, and at the FDA. She launched the Microtia and Atresia Clinic at the Vanderbilt University Medical Center, and champions genetic research for the microtia and atresia community as a co-investigator on a whole genome sequencing genetic research grant with Harvard, Vanderbilt, and the MIT Ford Institute. Melissa wanted the children and adults in her community to have a special day, so she established National Microtia and Atresia Awareness Day taking place every November 9th. She's the recipient of the Family Leadership Award for EHDI Excellence, and the Oticon Medical Advisory Award, including the Legacy Award for helping the microtia community in South Africa. She has over 20 years of experience in marketing, medical devices, and electrosurgical equipment, and holds a Bachelor's Degree in Biology and Psychology from the University of Colorado Boulder. Welcome, Melissa. I really look forward to our conversation. - Thank you, Dina. - Yes. So can you share the personal journey with your daughter, Ally, and take us back to the day she was born and how you found out about her diagnosis? - Of course. Well, first, Dina, thank you so much for having me on the podcast today. It's quite an honor. I appreciate everything you do. And there need to be more Dinas in our world. - So thank you. - Thank you. - So as a parent, you know, we are very excited to start families and have children. And on the day that Ally was born, to our surprise, and I apologize if I get a little emotional, but, you know, I had quad screenings done. I went to all my ultrasounds. I did everything right as a mom carrying a child. And to our surprise, Ally was born missing her right ear. And as a mother, the first thing I did was blame myself. I thought, "Oh no, you know, did I really eat something "or drink something that I wasn't supposed to "that I maybe didn't know about, didn't show up on a label?" Because I was good. And in the delivery room, you know, I delivered Ally via C-section. My husband was the first to see her. And I just remember him coming over to me saying, "You know, there's something a little different "about her ear." And I didn't know what that meant. But when they brought Allie over to me, I saw her sweet, beautiful little smile and her beautiful face. And I was just so happy she was with us finally. And we were just definitely surprised during our delivery. And we did ask our doctors, you know, "Do you know why her ear's missing, or what happened?" And there was silence in the delivery room, which caused a little bit of concern for us. So we didn't understand what had happened. So that was our experience, even though we were so excited that she was here. - So for those who may not know, can you explain what microtia and atresia is and then how rare is it? - Absolutely, so first of all, this is my daughter Ally. - Sweet. - And as you can see, her right ear is missing. And she has a little crooked smile. She has slight craniofacial microsomia because the one jawbone is shorter on the other side. And when children have microtia and atresia, they're often missing ears. And so, when a child is born without an ear, the ear canal is typically missing as well. So that results in hearing loss. And here in the United States, it's a 1 out of every 6,000 births that this happens. - Okay, so it's pretty rare. - It's very rare. And it's rare enough to where it's not typically on most doctors' radar. So oftentimes, families deliver children, and this was our experience as well with the majority of our community. The doctors really just don't know what to tell you. And you feel, you know, a little lost. You know, when you're told something's rare, you think, "Gosh, are we the only family in our state, "you know, with a child like this?" Or, "What doctors can we go to?" And sometimes they just don't often have all the answers. You end up going through a lot of doctor's appointments trying to piece together the puzzle pieces. - So how did this lead you to become an advocate for the hard-of-hearing and deaf community, particularly focusing on your experience with microtia and atresia? - Yeah, so when I was marketing medical device equipment, I was a product manager. And I was over, you know, technical equipment in the OR. And so I learned how to be an advocate for the patient in the OR, and to also help the surgeon, you know, make sure everything was okay. And when I had my own children, I think I was surprised that there wasn't someone there to advocate for me. So this came out in me, and I quickly realized that if we didn't get the answers from our doctors, there must be many other families that are struggling along the way as well. And so, that led into me creating a support group on Facebook. And that support group's called the Microtia and Atresia Support Group. Until this day, it is the largest support group out there. And within a year, we already had 1,000 people join from all over the world. And what was crazy to me is that it was the same stories. It didn't matter if you were from the UK or Mexico or, you know, wherever, it was the same questions. Like, why did this happen? Did I do something during my pregnancy? Will my child be okay? Will they be picked on or bullied? And, you know, what's a BAHA? That's the specific type of hearing device that our community uses. And just all kinds of questions. And I couldn't believe it, that we know so much about the ear and hearing loss in today's world, that all these families have these questions. - Yeah. And I was gonna say there really is that moment when you realize, "Oh, wait, I'm not the only one." - Absolutely, absolutely. - That there's whole community of people that feel the same way, that have the same questions. Yeah. - And also, you know, when I started my support group, Dina, I had to think long and hard before I hit that button to create it that I'm going to put my child out there, you know, to try and help the community. And so I had a lot of thoughts go through my mind before I started that. And here we are today, a nonprofit organization and the popular community for these families to find. Because they all feel lost and alone. - Mm-hmm. - Yeah. - So tell us about the Ear Community Organization that you started. - Yeah, so Ear Community is a nonprofit that serves the microtia and atresia community specifically. And our organization started just after I started the support group, so around 2010. And I was encouraged by some of my now sponsors to create a nonprofit. It would be easier for them to work with me and help because we have events and, you know, we donate hearing devices and try to help those in need within the community. And yeah, I never thought I'd be running a nonprofit, but here we are. - And you do it well from what I've seen. You're doing an amazing job. - Thank you, thank you. - And you have a small staff, right? It's just basically... - Yeah, I'm pretty much a one-woman show, Dina. - That's what I thought. - And I do have one employee that helps me with our events. And yeah, we're very grassroots, but it's where it starts. You know, it's from the passion and in recognition of seeing what your community is lacking and what it needs. That's where it begins. - I always say that. It's like, what does the community need and how do we fill that gap for them? Yeah. - Absolutely. And you wouldn't know unless you're a parent or an individual that is experiencing the struggles along the way. - I agree. So speaking of struggles, what are some of the biggest challenges faced by individuals with microtia and atresia? And how does your community support them? And you've touched a little bit on this, but... - Right, yeah, of course. Thank you for asking. So, with Ear Community, our individuals have different struggles. And you know, they all kind of vary on different levels. So you can have individuals that are missing one or both ears. So some of them can still hear if they have a unilateral hearing loss. And then there are others wh

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Austin Halls born with Moebius Syndrome.  He has incorporated his psychology degree, his journey, and his music to promote that you can love yourself and overcome any challenge that comes your way.  Austin will share his journey to the musician and now model that he is today.   - [Announcer] Welcome to My Face, My Story, Voices from the Craniofacial community, with your host, Dina Zuckerberg. - Hello and welcome to My Face, My Story, Voices from the Craniofacial Community. Whether you're watching on YouTube or listening on Apple Podcasts, click subscribe now so you'll never miss a future episode. And if you're a fan of My Face, My Story, rate and review the program on Apple's podcast so we can get our message of inclusivity and empowerment to more people. I'm your host, Dana Zuckerberg, the Director of Family Programs at My Face. I was born with a cleft lip, a hearing loss, and no vision in my left eye. My face, My story is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. Today I will be joined by Austin Halls. Austin is a positive force changing how people view themselves and the world around them. Austin was born with a rare syndrome called Moebius syndrome making him born with facial paralysis. At the age of 25, he has been through four facial surgeries just to smile. The doctor said he would never be able to eat orally, and at the age of three, he has proven the doctors wrong. He has carried this attitude with every aspect of his life. Austin's strives to incorporate his degree in psychology, his story and his music to promote that you can love yourself and you can overcome any obstacle that comes your way. Austin has been a lover of fashion, style and art since he was young due to him not being able to show expression through his face. Being a professional recording artist, he has since released two albums and a powerful pop dance song called "Disabled" reclaiming the identity of being disabled. Welcome, Austin. - Hello. I'm so happy to be here. - Yes, I'm really looking forward to our conversation. - Me too. - Yes. So for those who may not know, can you tell us about your facial difference and how, well, you've talked about how many surgeries you've had, but tell us a little bit more about your facial difference and what it means. - Yes. So Moebius syndrome is a super rare syndrome. The chances of getting this syndrome are two people out of a million. That's what I say, I'm two in a million. But with this syndrome, it is where the sixth and seventh cranial nerves are under developed. So I cannot move my face really at all. And I also cannot move my eyes laterally. So my face and my eyes are paralyzed. I also cannot blink. So I used to win all the staring contests in my school. - Love that. - But yeah, it's mostly facial paralysis. And just like any other disability, there's a spectrum and I'm very happy to have a more milder face. Some people have missing limbs, some people have tracheas. I had to have a feeding tube, like you said. So it just depends on the person. But facial paralysis is the biggest thing with Moebius syndrome. - Okay. So just outta curiosity, when you sleep at night, are you able to close your eyes? - So people have told me, because obviously I can't know myself, but my eyes close about like 90% of the way. So like, I think when I am, I can't really blink, so my eyes look super, super dry. I have eyedrops on me at all times. But when I am sleeping, people have confirmed I'm not sleeping with my eyes open and I'm happy because that sounds a little scary if I was just sleeping like this. So, yeah. So I think at night, it's closed like 90% of the time. I do wake up and I'm always like, my eyes are always burning, which is like just a classic case of Moebius. - Right, right. So can you share with us your personal journey, what it was like for you growing up? - I feel like my childhood was very, very, very normal. And I hate that word normal because everybody is normal, normal is literally just a made up word. But I feel like, the first three years of my life, I was in the hospital, it was back and forth. I was just really having a hard time adapting to, you know, this world. And after I got my feeding tube out and I kind of became, you know, stable in all medical issues, I kind of just lived the life that everyone else lived. I really didn't talk about my disability. It wasn't really in the forefront. I knew that I was different because I didn't see anyone with a facial difference. So I knew that I did have a disability, but I just lived, you know, my life knowing that I am just Austin. And I'm very happy that I grew up in a small school of 26th people, kindergarten through sixth grade. And it was just a really nice, like, they don't care about my syndrome. They just knew me. And my parents always pushed me to be vocal and to get myself out there. So I feel like a lot of the disability story is parents trying to protect them and almost coddle them where that could kind of limit their, you know, confidence, self-esteem. My parents were complete opposites and threw me out there and said, you're gonna go baby, and you're gonna talk to them and you're gonna do everything for yourself because as an adult, I'm not gonna be there to do everything for you. - Yeah, I feel like in some ways my parents always led me to believe I could do anything I wanted. There were no real limitations to the differences that I had. So I can relate a little bit to that. I also went to a very small school as well, so. So how do you think your journey with Moebius syndrome has shaped the person you have become today and your outlook on life? - I think that I would be a completely different person. There's like a dichotomy of, I was just talking about this, like, there's a dichotomy of like Austin with Moebius and then Austin without Moebius. And I really do believe like Austin with Moebius is a lot nicer, a lot kinder, a lot more empathetic. And I think we really do live a different path of the road that people don't even know is a thing. And I just think being, you know, being a different kind of minority group and going through this world with different experiences, you really learn what it's like to be on different sides of the field. I feel like, like I never want anyone to feel the way that I was growing up, especially if my bullying was, you know, a lot of it was a lot of like microaggression. It was a lot of staring, it was a lot of, you know, questioning my intelligence. And I know that's a huge thing in the facial difference community. We get just undermined in a lot of aspects of our life. So I feel like we have learned how to treat other people nicely, nicer and kinder and just be more empathetic for people. So I think Moebius has given me so many like just tools to be a better human being. And I think about like Austin without Moebius would just be a tornado and just going through life and just not even questioning anything. So I've gained so much like wisdom. I'm only 25, I'm gonna be 26 next a month and I tell people that I'm emotionally like 87 years old. - Right, right. Yeah, I couldn't have said it better myself 'cause all the things you just said I think of like... I mean I think we are more empathetic, we are more aware, we are so much because of experiences of growing up with a craniofacial difference. And then at the same time it's just a part of who we are. There was so much more than a craniofacial difference. - Do you feel that, I know this is your interview, but I would love to know how you feel about, you know, I think a lot of people on social media only see us talking about our identity of being disabled. And it's really funny because people comment and they're like, why are you only talking about your disability? And it's so funny. Do you feel like there's such a, I say dichotomy, said it twice, but like dichotomy of like normal life, you are not really talking about your disability but then your social life, you're only talking about your disability because it's so important. - Right. Well, it's interesting for me, I grew up never talking about it when I was younger. And so it was only, it started maybe in my early twenties like you. And then it really, I think took off in the last 10 years, 10, 15 years, but really in the last 10 years when it came to my face. And then I started going into schools and speaking to kids, which you've done with me as well. And it's sort of opened up my world. And I found the more I shared my story, the more people could relate and especially within the community to say, wait. And then I realized, wait, I'm not the only one that felt that way. Like, I thought I was the only one that felt that way growing up. So it's been, and I don't think I would necessarily go back and change it. Like I feel like because of my experiences, it's made me the person I am today. And I wouldn't be doing the work that I do if not the experiences that I had. So I'm not sure I would change anything. Do I wish sometimes it could have been a little easier? For sure. But I think it's shaped the person I've become. And I have found the more I share my story, the more people even outside the community can sometimes relate to what I'm saying 'cause they have their own insecurities or they have their own experiences. And so yeah, it's been a journey. - I think vulnerability is like the biggest thing. I think just like anyone with a disability, without a disability, like just being vulnerable. Like you said, sharing your story. Like people are, I think just trying to relate to anything nowadays. Like I feel like it's just hard to connect. Everyone's on their phone. You know, with the whole pandemic, I think just interactions socially are very limited. And people are afraid to talk to people that are new, which is crazy. But I think we're a

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Justin Stewart, who will share his journey from being born with frontonasal dysplasia with a cleft in his nose to being a signed model and the adversity and challenges he faced along the way. Through motivational speaking, he encourages others to be true to themselves and to be brave in this action.   - [Announcer] Welcome to "myFace, myStory: Voices from the Craniofacial Community." With your host Dina Zuckerberg. - Hello and welcome to "myFace, myStory: Voices from the Craniofacial Community." Whether you're watching on YouTube or listening on Apple Podcasts, click Subscribe now to the You'll never miss a future episode. And if you're a fan of "myFace, myStory" rate and review the program on Apple Podcast so we can get a message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "MyFace, myStory" is about people like us being seen and heard about sharing stories within the craniofacial community and with others. Today I will be joined by Justin Stewart. Renowned as a signed model and influential figure in the world of social media, Justin has left an indelible mark through his impactful participation in numerous viral campaigns, amassing over five million views across various platforms. His portfolio boast features in esteemed publications such as Vogue Magazine, Truly, VH1, "Good Morning America," and "ABC News." With a career adorned by collaborations with prominent brands like Nike, TELFAR, Google, and Rick Moss Maybach Music, Justin has become a recognizable face in the industry. Beyond the glamour of modeling, Justin's platform is a beacon for advocating inclusivity and representation, especially for the craniofacial community. His relentless efforts strive to reshape the modeling and entertainment landscape, emphasizing the importance of diversity and empowerment. Through his work, Justin stands as a beacon of inspiration and change, aiming to pave the way for more inclusive and diverse industry. Welcome, Justin. I really look forward to our conversation. - Good to see you. - Hi, Dina. Thank you so much for having me. - Yes. So I'm looking forward to our conversation. Can you share about your facial differences for those who may not know, and tell us about how many surgeries you've had. - Yeah, so I've had two surgeries in my life. I have frontonasal dysplasia, which is a form of cleft. So I'm in the cleft family. - Okay. - But yeah, I've had two surgeries. One when I was six months old, and the other one was when I was about 13, 12 to 13 years old. Of course, I don't remember the one when I was six months, but the one when I was about 12 or 13, I can remember them taking cartilage from my left ear and doing some reconstructive work with that from my nose. - Okay, and how has growing up with a facial difference affected you? Give us a glimpse into your life growing up. - I mean, it was definitely challenging being one of the only in my neighborhood and where I played sports at and where my family resided. I was always the standout. I didn't look like anybody else or resemble anyone, so I always felt like I just stood out where I was the shadow. So growing up, trying to navigate that and trying to figure out who I was and who I wanted to be was definitely a challenge for sure. - I can relate to that for sure. So what was school like for you? I know you dealt with a lot of bullying. - Yeah, school was rough. I mean, kids can be cruel. I feel like I had a few friends throughout my life that were very supportive of me, and we're still friends to this day as me as an adult. But just the overall general, like school was rough. It was really rough just dealing with kids, asking questions, kids being ignorant, kids saying mean things. It was rough, but I had a great support system at home. I had a great support system with my friends. And I played sports. Like, that was really, really big for me in my development as well. So it was rough, but we made it through. - I always say when I talk to the kids when I go into school, they always say that all do you need is one or two good friends to get through it all. So yeah, for sure. So what or who gave you the strength to get through all that bullying growing up? - I think that's an interesting question. I feel like for me, I knew that all of these things were happening to me for a reason, and I just didn't know what the reason was yet. Like, I knew I was here for a purpose. I knew I would be doing like some really big things in life. I knew that at a very young age, but I just didn't know what. And that was something that really inspired me and kept me motivated and kept me inspired to keep going and keep pushing forward, just that idea of, I don't know what it is or what that reason may be, but I know I have it, and I'm just gonna just keep pushing forward and keep striving for greatness, essentially. And like I said before, I had a great support system. Like my older brother is my hero, my oldest brother, Donald, he's my hero. I have a twin brother named Jordan, was not cleft affected, but we're twins. So we were very, very close growing up. Literally my best friend. So without him I wouldn't be here either. And my little sister Victoria was major when it came to that as well, because I stepped in a role as a older brother. So I knew I had somebody that was looking after me as well. And of course, I have my parents, like I have a great support system between my mom, my dad, my uncles, my grandfather, somebody that I truly, truly admire, my grandfather. So I had the whole package when it came to support. - Amazing. Yeah. I always say that my family was my greatest support too. So speaking of big things, what made you decide to be a model? How did you get into it? - That story is really crazy in itself. I was in high school. I think I was a senior in high school and kind of segueing into college, my freshman year of college. And I was just sharing a lot of things on social media. Like, school was really hard, didn't really have a sense of community, and I went on social media essentially looking for that. Like, my whole goal was sharing my story on social media. Wasn't even to be an influencer, it was just to find people that understood what I was going through and just trying to connect with them. And that's how I pretty much started on social media. And a few posts caught a lot of attention. And then that's when I got into sharing more and being an advocate, being a cleft advocate, being an anti-bullying advocate was something that was very, very important to me in the early stages of my career. And from then with all the influencing work came these modeling opportunities that I never dreamed would be possible, never a million years would I have thought that, you know, I could do any of these things. I've never like seen anybody in the craniofacial community in movies, on TV, on the billboards in Times Square, so I just never thought it was possible. And I knew of like athletes or just public figures that had cleft or had a craniofacial difference, but they weren't people that we could touch. They weren't people that were reachable to us. So it was definitely a thing where it was just, like, a lot of nerves, like not really having anybody to talk to about that aspect either that was already in the industry that dealt with some similar things. But I definitely took the leap of faith, and we're here now. And I can just, you know, shoutout my agency for believing in me and taking a chance on me and seeing something that I didn't even see in myself at the time. - Right, so what was it like for you when you did your first modeling job? - My first modeling job was actually really cool. My first experience on any set, I would say, it was probably like the experience that you would probably want to hear about it. It was just a lot of nerves. Like, I was really scared. And I remember like asking everybody in my family, like, I needed somebody to come with me because I didn't wanna go by myself, but everybody had something going on in that particular day. So I had to go by myself, which I didn't want to do. And I remember just being there alone, and everybody had like a friend there, or like a family member there, and I was like the only one that was by themselves. And I remember being on set and it was just a lot of lights, a lot of cameras, like, a lot of direction and movement. And it was really hard, it was really hard. My anxiety was through the roof, and it was challenging, it was very challenging. And I remember I met somebody there that day, one of my biggest mentors in my career. Her name's Christiana. And I remember walking in, and I remember seeing her not knowing who she was. She's a very renowned model, been on "America's Next Top Model," like she is big time. And I remember just seeing her not knowing anything about her, not knowing who she was. And she just made the experience so much better for me. Like, I was so anxious, so nervous, so just out of it. And she spoke to me, we talked, she gave me a lot of pointers, she gave me a lot of great advice. And she just overall just made the experience so much better for me, and we ended up keeping in touch. Like, I remember leaving there. I remember calling my mom after I left and I was like, "Listen, I will never, ever, ever do this again in life." Like, that was a conversation I had with my mom at the time. But I can remember leaving and Christiana kept in touch with me, like I went back to school, did some things down there in college, and she kept in touch with me all the way and was very supportive of me with my advocacy work and my modeling career as well. And she's one of the reasons why I decided to stick with it and continue to pursue a career. - Right, so what do you love most ab

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Kathleen Watt, an opera singer on some of the biggest stages whose life changed when she was diagnosed with bone cancer in her face. She will speak about her memoir, REARRANGED where she writes about coming face-to-face with mortality, disfigurement, having her face reconstructed, and the meaning and uses of beauty. REARRANGED is a tale of letting go to hold on, of putting old pieces to new uses—and of the unlikely arrangements that make it all work out.​   - [Narrator] Welcome to "myFace myStory, voices from the craniofacial community" with your host Dina Zuckerberg. - Hello and welcome to "myFace myStory, voices from the craniofacial community." Whether you're watching on YouTube or listening on Apple Podcasts, click Subscribe now, so that you'll never miss a future episode. And if you're a fan of "myFace myStory," rate and review the program on Apple Podcasts, so that we can get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace myStory" is about people like us being seen and heard, about sharing stories within the cranial facial community and with others. Today I will be joined by Kathleen Watt. Kathleen Watt sang principal roles with various opera companies and in the extra chorus of New York's Metropolitan Opera, before her singing career was severely ended by osteogenic sarcoma, bone cancer in her face. She recently wrote her memoir "Rearranged," which tells of leaving the operatic stage for a starring role opposite the Big C. Bone cancer in her cheek, ended her career and brought her face to face with mortality, disfigurement, the meaning and uses of beauty, and a lot of leftover pieces. "Rearranged" is a story about letting go to hold on, of putting old pieces to new uses, and of the unlikely arrangements that make it all work out. Since retiring from performing, she has written frequently on performing arts and cultural issues, including features, profiles, and essays. As a writer and cancer survivor, Kathleen has collaborated with doctors and artists on a range of projects, including an appearance on a BBC Four series about facial disfigurement. Formerly an assistant art director in publishing, Kathleen attended Rhode Island School of Design, Brown University, and Brigham Young University, earning a double BFA in art and music, with postgraduate studies in opera performance at Boston University. Kathleen now writes from a windswept hay farm in the Catskill Mountains of New York, where she resides with her partner, 10 chickens, three dogs, and on occasion her two grown stepchildren. Welcome, Kathleen. I really look forward to our conversation. - Thank you, Dina. It's a delight to be here. - Yes. So why and how did you become an opera singer? - Well, my mother was a classically trained singer, so I grew up with the sound of that kind of a voice in my ear early on. But I personally, I took a long way around. I went to several different schools, as you just recounted. I got a BFA in art and a minor in voice, but I chose to prioritize singing, because it has, you know, supposedly it has an expiration date. And also with serious singing, I had to come to the grudging understanding that the only way to get paid was to get hired by a company, so that meant opera. But once I got into it, I was really hooked on grand opera, One of the things I liked about it, besides the comradery of other musicians and the music and the lights and the costumes and everything, was the way that operatic singing is almost like an athletic activity. It's full-bodied, muscular and musical and lyrical all at the same time. So I really enjoyed all of that, so I was hooked. So I had to get a job. - Right, right. I fell in love, the first opera I ever saw was "Madam Butterfly," and I fell in love with the opera after that. - Oh, that's one that will make you fall in love. - Yes. So take us back to the day when you learned that you had bone cancer in the face. What was going through your mind? - Well, my tumor was identified by my dentist, as often happens with head and neck cancers or serious head and neck conditions. I asked my partner, Evie, to help me identify a bump in the gum line over my back teeth, and we agreed that I should ask my dentist about it. But he sent me to an endodontist who thought it might be a condition requiring a root canal, and then he sent me to an oral surgeon, who thought it might deserve a biopsy. So by March, I had my diagnosis, and I first heard the news on my answering machine. It's not something you're ever really prepared for, even if you've seen it in others and you know it might be coming. We took one step at a time as it was revealed to us, what else can you do? And I had surgery in April, which coincidentally I had my surgery in April on the very same day that I was scheduled to audition with the Met for my full-time position. So it was very karmic in that way. - So as you said, you were an opera singer and then you auditioned for roles. How did preparing for your surgery, especially your first surgery, how have that experience of auditioning for the offer, how did that experience help you in your medical journey, if it did indeed, helped you? - Yeah, that's a great question. And it came upon me, the answer to your question came upon me as I was writing. As an opera singer, of course, my diagnosis was cataclysmic. It put my career plans in jeopardy, and my instrument, that is my body, was at risk. And it was my whole reason for being. At the moment I was in mid-career, the diagnosis came right in the middle of the operatic season. So I was more or less in performer mode as we took on the cancer. And I remained, so actually, for a couple of years. And my very first questions when I heard about the diagnosis, or when I first got my tests and I knew what was in the future for me, was could I make it back to the season? Could I make it back and have enough time to practice and be ready for the season? I would miss the second half of the current season, but could I get back for this for the next season, you know? So I was in performer mode, and in retrospect, as I was writing, I realized that I kind of, I prepped for my role as a patient in much the same way that I might prepare to sing a character role. In fact, right from the outset, because I learned of my hiring at the Met by way of an answering machine message, which the maestro told me that I had missed my first rehearsal, which nobody told me about, and I would be fired if I missed the next one. - Right. - Similarly, I learned about my cancer on an answering, a telephone answering machine message, it's so ancient, I can't even remember how to say it. But this time from my oral specialist, and he was saying it never was a dental problem, that was a waste of time, it's cancer, and I might die if I don't find a head and neck surgeon. So, they were two very, you know, distinctly different embarkations on a big adventure, so. - Right, right. - And then I basically took on the responsibility of the role I had to play as a patient and learned everything I could about it, and attended coachings, consultations, and then I showed up for the downbeat. And then once the curtain is up, just as in a performance, there's no way to go but forward. - Right, right. - Go on. - That's what you had to do, right? You had to go forward through the whole thing. - Yeah, yeah. And in retrospect, I really think a lot of my training as a singer gave me resources that I would come to rely upon. And it's not unique to singing, but anybody who becomes a, I think anybody who becomes a hostage of the hospital situation in, you know, whatever their situation is, brings to it all of their resources. I mean, I had physical fitness and patience, I think, as a long time student of classical voice, but whatever it is, you have a lot of the resources within you to meet and sustain the ordeal that seems like something completely novel. Until you recognize that you bring your whole self to it, and very often you're more equal to it than you expect. - Right. So what or who gave you strength to get through, I believe it's 32 surgeries, to get to where you are today? - Yeah, 32 with general anesthesia, not counting the little ones. - Okay. - Well, I have to credit my support system. Of course, there's nothing more powerful or sustaining than a strong support system. I had my siblings, and my primary caregiver was my partner, Evie, who was absolutely essential. And she was never able to breathe easy until the whole thing was over. And we never knew how long it was going to be. So we were kind of in an isometric holding pattern for a decade. And she as a mate, and the role she played, the role of the caregiver, are actually major characters in the book. But they all showed up, my siblings and my partner, and because they kept showing up, I felt I ought to make it worth their while, I guess. It gave me an incentive to keep showing up. If this was worth it to them, I better make it worth it for them to come. And I will add to a certain extent that we entertained each other. I mean, nothing is more important than a committed support system. But I will also add that we should never underestimate the value of humor. - Absolutely. - And there's science behind that now too. As I understand it, nothing releases the brain's healing hormones, the endorphins, the dopamine, that everybody's always trying to get from somewhere, there's nothing that releases it like a good joke. Cracking good laugh. And that's something you can do for yourself. Have you found that? - I love humor and that is something, yes. And I also think that's what I loved when I was reading your memoir about how you talk about those moments that like seems so crazy or hard, and then you'

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Naomi Levinshtein and Aaliyah Booker. They will share their personal journeys, and their advocacy work, and discuss the profound importance of the "Don't Stare, See Me" campaign for themselves and their community.   - [Announcer] Welcome to "myFace, myStory: Voices from the Craniofacial Community" with your host Dina Zuckerberg. - Hello and welcome to "myFace, myStory: Voices from the Craniofacial Community." Whether you're watching on YouTube or listening on Apple Podcasts, click subscribe now so that you'll never miss a future episode. And if you're a fan of "myFace, myStory" rate and review the program on Apple Podcasts, so we can better get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. Today I will be joined by Aaliyah Booker and Naomi Heather. Aaliyah Booker is a facial difference and disability advocate. She's also a D1 student athlete at St. Peter's University, majoring in biology, aspiring to work in the medical field. She too was born with Goldenhar syndrome, which came with a long road of surgeries, therapies, and a lot of rehabilitation. Aaliyah shares her story to empower the youth who look different, that different is beautiful, and to prove to society that we are more than just our differences. You can find her on all social media platforms celebrating her uniqueness, especially on YouTube, interviewing others within the facial difference community, for them to share their story as well as their accomplishments and goals. Additionally, she recently started her own business, Born to Stand Out, that focuses on self-love and acceptance. Naomi Heather is a 24-year-old makeup artist, photographer, Brooklyn College graduate, and facial equality advocate born with Van der Woude syndrome. Naomi loves blending her art with her advocacy and believes everyone deserves to feel beautiful. You can find her on Instagram at NaomiHeatherMakeup, where she showcases her makeup and photography. Welcome Aaliyah and Naomi, and we look forward to our conversation, hi. - Hi. - So, can you each share about your facial difference for those you may not know, and tell us how many surgeries you've had? And I'll start with Aaliyah. - Oh, Dina again, it's so good to see you again. - Yeah. - But, like you said, I was born with Goldenhar syndrome, and Goldenhar syndrome is a facial difference where your facial features is, some of them are underdeveloped, and for me, it only affected the left side of my face. And that means I was born with a underdeveloped mandible, underdeveloped ear, and underdeveloped eye. And within that, I had like multiple surgeries. I can't remember, like let's say, I had like over 26 surgeries we can say. - Wow. - And within that, you know, that didn't stop me for anything, you know. Right after those surgery, therapies, you know, I went straight to, you know, practice or anything, so, that's Goldenhar syndrome and it didn't affect me. - And Naomi? - I was born with Van der Woude syndrome, popliteal pterygium syndrome, kind of a mix between the two. I've had around 20 surgeries. It affected my lips. So I had a bilateral cleft lip and palate. I had bottom lip pits. So I have a lot of scarring here and it affected my nose and my hearing. So yeah, that's me. - Thank you both. I can't imagine having that many surgeries. I only had six growing up, so, yeah. So how has growing up with a facial difference affected your life? Give us a glimpse into your life growing up with a facial difference. Aliyah? - Me? Okay. So growing up with the facial difference, you know, I wouldn't say it was just always as tough. I feel like everyone always said it is tough, but I was brought in an amazing and strong family and they never treated me any different. They like how we should, you know, we're all human. There shouldn't be any, you know, oh, just because I have a difference, oh, I should be treated differently. No, we're all the same. And, you know, just being raised in a great family, you know, they really uplift my spirits even though when I was down and like, you know, just didn't feel like I belonged. You know, they always reminded me like, you do belong. There's nothing wrong with you. - Yeah. - And they're actually right. There isn't, and wasn't nothing wrong with me. And, yeah, I did have my times. I did have my moments like everyone in the craniofacial community did. And, but I didn't let that stop me at all. You know, I did everything. Like I have three brothers and I did, I wanted to do everything they wanted to do and I did. So like say they did karate, I did karate, say they did football, I tried to play football, but you know, I was just a regular kid, regular kid. And growing up with the facial differences, yeah, we had, I had multiple surgeries, therapies and a lot of rehabilitation. But, they always made it so much fun for me. I, even though I hated going to the hospital 'cause I never understood why I needed to go, but I did at the same time. But I think I was just so ashamed of, you know, of being there and why, and the reason of being there. 'Cause you know, being in a family, they're telling me like, oh, you don't look different, but why am I being put into a hospital doing these different things with different children? So I'm going to the hospital like, oh my gosh, like, what am I doing here? And I see all these children and they all had these differences. And I'm like, why am I here? I don't have a difference. Because my family is telling me like, oh, you're, there's nothing wrong with you. So it did confuse me for a minute, but then, you know, I would say like at a certain age, like around in middle school, that's when I realized I do have a difference. And it was really tough, you know, growing up, you know, going to school, you know, interacting with kids, you know, not everyone is too kind and, that really did something to me. And, you know, I didn't let it affect me too much because I always knew I had a, you know, I was always coming back to a place which is my home. I was always coming back to my family and they always reassured me. I was, you know, just me and Aaliyah, like, there's nothing wrong with you. So I was blessed to have such a amazing family. And even though I did have some trials and tribulations with growing up with the facial differences, it all led me to where I am today. Speaking in front of you and Naomi right here. Like, I, this is such a big blessing for me to overcome my battles and just share my story with y'all. Like, this is so much fun. It is so cool. - Yeah. - That's my experience of growing up with the facial difference. - And I have met your family and I could see how they are such a huge support for you. - Oh. - And I always felt the same way when I was growing up, that my family was always there no matter what. - Yeah. Mess. But I love them. - Yeah. And Naomi, tell us about how your facial differences affected your life and give us a glimpse into your growing up. - So, I mean, I think growing up with a facial differences affected me in many points of my life. I grew up with a single mom and so things were really hard for us growing up. I was always kind of like chronically ill on top of my cleft and had complications with it. So a lot of my medical problems kind of had to be watched over. I, but I also feel that it has brought my family very close together and they've always been really supportive of me and encouraging of me. I always kind of knew there was something different about me. I think like my first kind of interactions with kids my age kind of solidified that for me. But I, luckily I was, had really lovely mother. I had a lovely brother that didn't allow me to stop what I wanted to do or let me feel that my difference made me less than. I had a lot of issues connecting with people my own age growing up. Not in the sense that there was like anything wrong, but I think kids can behave negatively to what they do not understand. And I was always, you know, a very loud, proud person. So I came into a few bad bullies. And in a way I do think that it shaped my life and my perspective of the world and people. But I don't see that as a negative per se. I just acknowledge it. I, but yeah, I feel really grateful to be who I am no matter what I went through, because I feel as though my experiences growing up with my cleft, with all these medical problems has helped nurture a very empathetic spirit. - Right. - Resilient kind of personality and I found a piece of my purpose because of it, which is advocating for people like me. So, yeah, that's me. - Wow. Speaking of purpose, what inspired you to become a makeup artist? - So I found makeup one year when I was dealing with a lot of medical issues. So, makeup kind of became a comfort for me. It became a way to express myself because I always felt as a kid that people were looking at me and talking about the way I looked. But with makeup I felt like a sense of control in that and a way to express myself visually and show people not only who I am, but also my talent and my craft. And to this day it's become sort of a comfort place, something that soothes me and gives me peace. And I feel like everyone, no matter what, should look for that one thing that helps center them. So that's, makeup has been my thing. - I have to say, you've in some ways, 'cause I never like wearing makeup, it's still, I find it hard, especially when I'm accentuating my lips. But you actually inspire me to think more about it and to take more risk with that, so, thank you for that. - No problem. I mean, I think amazing things happen when you step out of your comfort zone. A

On this month's myFace, myStory podcast, host Dina Zuckerberg is joined by Leah Riman, who will share her journey from when her son, Logan, was born with a bilateral cleft lip and palate, blindness and other challenges to the music prodigy he is today. At the age of 2, Logan started playing the piano and he has played on some of the greatest stages including Madison Square Garden, Radio City Music Hall and Carnegie Hall. Logan is her greatest joy and Leah is his greatest champion.   - [Announcer] Welcome to "myFace, myStory," voices from the craniofacial community, with your host, Dina Zuckerberg. - That was Logan on the piano. Today we'll be talking to Leah Riman, Logan's mom, about her journey and Logan's passion for music. Hello, and welcome to "myFace, myStory," voices from the craniofacial community. Whether you're watching on YouTube or listening on Apple Podcasts, click subscribe now, so you'll never miss a future episode. And if you're a fan of "myFace, myStory," rate and review the program on Apple Podcast so that we can get a message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace, myStory," is about people like us being seen and heard. About sharing stories within the craniofacial community, and with others. Today, I will be joined by Leah Riman, and we will hear from her son, Logan, on the piano. At the age of 19, Logan is a musical prodigy and has been playing the piano since the age of two. Born with a bilateral cleft lip and palette, microphthalmia, a rare eye condition where a person is born without eyes, resulting in blindness and other challenges. Logan's whole world revolves around music, and he plays everything from classical, to show tunes, to today's greatest hits. Besides piano, Logan also plays the drum, plays guitar, and tap dances. Logan has performed on some of the greatest stages in the world, and as he says, "he's just getting started." He is inspired by the powerful words of Helen Keller, "The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart." And also the words of Hans Christian Anderson, "Where words fail, music speaks." Recently graduating high school, he is currently trying to find a placement in a musical conservatory or program on a college level where he can continue to study what he loves, music. Leah Riman is a property manager in a the New York City area, who holds a master's degree in audiology, and whose dream it was to earn her PhD in cochlear implantation, when life took her in a very different direction. Her greatest achievement in life is her son, Logan. And she's proudly watching him accomplish what she was told he would never be able to accomplish. She is his greatest cheerleader, advocate, and supporter. Welcome, Leah, I really look forward to our conversation. - Hi Dina, thank you so much for having us. - Yes. So take us back to the day Logan was born. - So Logan is my Thanksgiving baby, and yeah, he was born via C-section. So 10:40 AM you know, first-time mom, nervous, excited, and you know, you wait for that cry that you're supposed to hear and then, you know, everything is kind of okay. And my heart's beating and I hear the cry and I'm like, okay. And then I hear the doctor say, "oh, we have a cleft lip, it's only cosmetic." And I'm like, "oh, oh, cleft lip, okay." Well, I went to school, so I know it's not only cosmetic, but okay, that's the least of my, you know, anything. He's here, he's okay, he's okay. Cleft lip, we'll figure it out. And then everybody's hush, hush, quiet, quiet, you know, and there's that big curtain in front of you. So I don't know what's going on. And then nobody's really saying anything to me. And then I'm like, "well, can I see him? Can I see him? Can I see him?" And they finally like, shown him to me and put him by my shoulder. And I'm like, "oh, why are his eyes closed?" And nobody's saying anything. I'm like, "why are his eyes closed?" And they quickly, like, literally, took him away and they're like, "oh, it's normal. Sometimes babies are born and their eyes are closed for 24 to 48 hours." And that was it. And as I'm still being worked on and sewn up and all that, my blood pressure starts to rise crazy. And I start having very bad reaction, you know, 'cause I'm stressing. And they like, knocked me back out, you know what I mean? They put me out 'cause I started reacting not very well. Yeah, that's not quite how I expected it to go, but yeah. - So what was your reaction and what went through your mind when you then heard, so you said you heard that he was born with a cleft lip and palette, but when you found out that he had no eyes? - I didn't find out about the no eyes for probably a couple of days because he was taken to a different hospital. He was moved and I wasn't moved with him. And it was Thanksgiving weekend. Doctors were, you know, it wasn't a full staff or whatever it is. And that wasn't, I didn't know anything, put it that way. And nobody was telling me anything because again, my stress level was on another level, you know what I mean? And I just wasn't reacting well at all. And I asked if I could be moved. They kept saying no. I literally early, checked out after a C-section, which probably isn't advisable, but to get to him, you know? And still, eyes were closed. I wasn't, I honestly wasn't thinking, no eyes. I don't know what I was thinking, but it wasn't no eyes. I didn't know what to concentrate. You see your baby in this little thing with a whole bunch of tubes and I didn't even like, the way, speechless as I am right now, that's kind of how I was, staring at him right there, you know? But I was next to him, so I was already calmer. - Right. - And the first thing I remember, when I did come up to him, he pulled out his tube, you know, and they're like, "oh, we're gonna feed him, we're gonna feed him." But again, he wasn't eating from anything. But when I got there, he pulled out his tube. I dunno, I took that as like a weird, like, he knew I was there, you know? And still, it was a couple of days after that, I think it was that Monday after, I guess, Thanksgiving weekend where they had the ophthalmologist come out. And you know like, in the movies when they start talking to you and giving you some kind of news and everything in the background goes slow motion? - Mm Hm. - As the doctor is telling me, you know, "I'm sorry," and like, "your son is never gonna see, he has no eyes." - Wow. - It's like, the world was going slow motion. - Wow. - And I was like, I wasn't comprehending what he was saying. And I'm like, "oh, okay," you know, "take my eyes," you know, "when can we do this?" And he's like, "that's not how it works. There's so many nerve endings, we can transplant almost anything, not eyes." And I was like, the cleft wasn't even an issue at that point. - Right, right. - It's a whole different ballgame at this point, you know? So yeah, that was, that's our birth story. - Wow. - You know? Yeah. - So what did the doctors tell you once, I mean, what did they say? - So they didn't know what it was because he had several anomalies. The microphthalmia, he had ear pits, which I know are connected to kidneys. He had a heart murmur. - Yeah, uh huh. - He had something called anal stenosis, and the cleft. So there must be a syndrome associated with it. They didn't know right away if he had a brain, was it a functional brain, what it was gonna be. And the best that they could say is "he may not walk, he may not talk, he may not be able to feed himself. We don't know," you know? That's kind of what I was left with. "We don't know, he has something, but we don't know what," so yeah, that was- - Yeah. My parents took me to a neurologist, so I couldn't hear when I was born, but they didn't do hearing tests those days. So my parents took me to a neurologist when I was three 'cause I wasn't talking, I wasn't communicating. And the doctor said something along the lines, similar, you know, and that I may not be able to talk, I may not be able to play the piano, I forget what it was I could play. - Right, right. - And clearly, they didn't get that right. But I think it was because I basically didn't hear anything, so I wasn't reacting. - Right, of course. - But it's crazy how they didn't do a hearing test in those days. Now, they do it automatically when a baby is born. So I can relate a little bit to that, and I'm sure my parents could, yeah. - Yeah, so I went to school for this, so I was familiar with the whole newborn hearing screening and all that. But when it's your child on there and they're like, oh, we have to do the screening, I'm like, "what? What do you have to do?" I was completely like, in a fog, you know? - Wow, yeah, I'm sure. - So yeah. - So how many surgeries has Logan had? - So we've been actually very, very lucky that we got, you know, Dr. Cunning. And he had one very long surgery, but he did have it. And they were able to repair everything at once. And anything else that he made, like, I get recommendations, you know, from those, "oh, well, you should get him," like, "fix his nose. He's got a very bulbous nose and he's of the age, and you can do that." And if it's not medically necessary- - Right. - I'm not doing it, I'm just not doing it, you know? So I'm happy with the way things are, thankful that he only had to endure one surgery. - Right. - And that's it. We got very lucky. - Good, so I know he graduated high school in June, which is very exciting. And you must be so proud of him. What was school like for him? - Oy, so school, school was never easy. Logan never quite had the proper setting for him. He was either too advanced or too delayed for a program. So he was kind of bouncing around, you know? And so fairly early on, they said that he's possibly on the spectrum, which is something that

On this month's myFace, myStory podcast, host Dina Zuckerberg is joined by Mary Avella, born with Crouzon Syndrome. They will discuss how those with facial difference can hide their true selves wearing both figurative and/or literal masks, even creating a personality. What happens when you remove those masks and reveal who you are underneath? - [Announcer] Welcome to "My Face My Story, Voices From the Craniofacial Community," with your host, Dina Zuckerberg. - Hello and welcome to "My Face My Story, Voices From the Craniofacial Community." Whether you're watching on YouTube or listening on Apple podcasts, quick subscribe now so that you'll never miss a future episode. And if you're a fan of "My Face My Story," rate and review the program on Apple Podcast so that we can get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the director of family programs at My Face. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "My Face My Story" is about people like us being seen and heard, about sharing stories within the cranial facial community and with others. Today I will be joined by Mary Avella. Mary was born with Crouzon Syndrome and she has had 30 surgeries. She is a student at Hunter College where she is majoring in psychology, neuroscience, and aspires to be a neuroscientist. She is passionate about advocacy for the disabled community and has been a member of the My Face family for a long time. She is also passionate about reading. Welcome Mary, I really look forward to our conversation. - Thank you so much for having me. I'm so excited to be here. - Great. So Mary, can you share with the audience about your facial difference and describe your difference for those who may not know what it is? - Absolutely. Crouzon Syndrome is where the seams of the skull are not fused properly, and one the main symptoms is that growth in the middle of the face is decreased. - And what was your childhood like for you growing up? - That's a very good question. I mean, I do have plenty of good memories, but I have just as many bad. I mean, surgery was, I had my surgeries very young in childhood, so they were all very traumatic for me. And again, that was half my childhood. So it definitely was not easy. I was also very different from all the other kids at school. I was the only one that looked like me. I was in special ed class, one of the special ed classes. I had a nurse. At some points later, I had a para, so it was definitely an abnormal childhood. - So what drew you to psychology neuroscience? And why do you wanna be a neuroscientist? - Well, it is a very complicated answer. I was trying out a few different majors and I really didn't find the right fit. I was math, I was English, which is like total opposites, and I really didn't know what I wanted to do. And then I've been going to therapy since I was five. So I had like, I had an inside piece to that world of psychology. So I've been a part of it for so long. So I figured, let me just try this, and I took my first introduction to psychology class in 2022 and I absolutely loved it. I wanted to help people like me who have facial differences and who have autism. I'm on the autism spectrum, and I wanted to just help people because a lot of people don't have both autism and a facial difference. And it's even rare just to have a facial difference. So I wanted to, as I said, just help people. But then I realized maybe being a therapist wasn't for me, that was the initial path I wanted to go, and I figured, well, I still wanna help people, but I wanna do the research behind that. That's how I can still help people. And all that is neuroscience. - Yeah, and I think we can use more researchers, especially in the craniofacial space. So that's great. So during the pandemic, we were all literally wearing masks, but I think many of us figuratively wear masks, especially for those of us with craniofacial differences. And you and I have talked a little bit about this. Why do you think we figuratively wear a mask? - Well, it's actually, I'm studying this with psychology, everybody does it to a point. We all have different aspects of ourselves. Like for me, I have work, Mary, I have school, Mary, I have family, Mary, it's, everybody does this. It's how we function through the world. But some people put on different aspects of their selves a lot more, or they try and hide who they are a lot more. I think that some of us wear figurative masks more than others because society has taught us that we're not good enough and we're very ashamed of who we are. So we feel like we have to be somebody different. - It's almost like creating a different persona of who we are. - Yeah. - To try to fit into that mold or that experience that we think others want of us, I think. - Exactly, exactly. We think that, especially from a very young age, we're taught, okay, so if you are this type of person or you're born this way, you're supposed to act this way and you're supposed to fit into this mold, and if you don't, then there's something wrong with you. So then a person will feel like they have to be less of themselves and more of the mold that were taught to be. - So how does wearing a mask protect you? - Wearing a mask, now, a bigger reason why I wore a mask was actually, it was more motivated by my autism than my facial difference. But there were so many aspects to this. Wearing a mask helped hide me in the fact that I didn't want people to know that I had autism. And obviously I can't hide the facial difference, but it would just help people like, hey, look at me, I'm a normal person like you are. I just have this very different face. It shouldn't be a problem. So wearing a mask, definitely, I tried to mold myself to be more like other kids in school, other girls, what women are supposed to be. So I definitely tried to do that. And for a long time it did hide me, it hid me well. And also masks definitely hide our deep, inner emotions. So a lot of the pain that I was going through was hidden by trying to be like everybody else. - Yeah, it's like I didn't want people to see that side of me. So I created this whole other person so that I could appear this way when maybe I was still feeling that way. But it allows you to do that, when you wear a mask in some ways. So during the pandemic, do you think there was a normalizing or leveling of the playing field when we were all wearing masks? - 1000%. That was one thing that I noticed right away. I've been stared at since I was five years old because of how I look. And it's especially because again, Crouzon Syndrome, it affects the middle of the face. Half of the middle of our faces were covered by masks. So if you're just seeing me from like halfway up the nose up, it's very, it hides a lot of the parts that were very different. So I mean, my eyes are not the same size. My nose is a little pinched on the very top. So that part was seen, but like the difference in my jaw or, which has been fixed, but the difference in my jaw or my lips already been, or maybe like how much bigger the lower part of my nose is compared to the upper part, were all covered, and I noticed a lot less staring. - Right. And were there any challenges for you in wearing the mask? - Yes, because of Crouzons, I'm primarily a mouth breather. It's very hard for me to breathe through my nose. I have to like, like people do it naturally. I have to like, okay, I'm breathing through my nose now. I have to like prepare my body. So if you have a mask covering, that's like right on top of your mouth, that makes it very hard to breathe. Most masks I couldn't wear because every like two minutes I'd have to take it off and engulf so much air through my mouth. I had to wear more flexible ones or maybe made out of more stretchy material. Like I could not wear blue hospital masks. I could not breath in the those, it was very hard. But I had to wear these specific black, like stretchy masks that were right on top of me. They had more of like a gap in between the mask and my mouth. - Right, I found also, because I'm also a mouth breather, that, and I don't know if this was true for others, but I found my glasses were always getting fogged up with the- - Yeah. - The mask because I think I breathe so much here, so if it wasn't capturing it all in here. Yeah, so I get it. So what are the consequences of wearing a metaphorical mask? Do you think we can wear a metaphorical mask and be authentic at the same time? - That is a very gray area question. - Yeah. - With wearing a mask, you know, you're performing, you're putting on a part. You can't always perform. Like psychologically, that will wear and tear you and that will do a lot of damage to your mind. And eventually the jig's gonna be up, or eventually you're just gonna get so, I know me personally, you're gonna get so angry at yourself or just so tired of having to play two parts that you're just gonna- one day, and the jig is up. And I feel like you, it's very hard to be authentic. Being authentic and wearing a mask are two opposite things. It's very hard to do two opposite things at the same time. But it's funny that you mentioned this, that you asked this question because there is a quote, I heard it in a TV show, "Disguise is always a self-portrait," and I think there's a lot of truth to that. We incorporate a lot of subtle truths about ourselves in the mask. Like we, maybe the person that we want to be, or like a certain quirk that they have will incorporate that. Or maybe a quirk that we have, as being as our authentic selves, it'll still be in the mask a little bit. Or sometimes the, or sometimes even the mask will be some of our inner emotions that we wanna let out, but we just label it as another personality. - Right. And I think the vulnerability, I think, plays a part in this because it's really hard to be vulnerable and let people see you when you're hiding behind the mask. But it's alm

On this month's myFace, myStory podcast, host Dina Zuckerberg is joined by Jeremy and Henry Shipp. Jeremy is a writer for the Disney Junior cartoon, Firebuds. His son, Henry, was born with a cleft lip and palate and was the inspiration - and the voice -  for the car character Castor on the Clefthood episode. Jeremy and Henry  will talk about their journey and why positive representation in the media matters.    - [Narrator] Welcome to myFace, myStory. Voices from the Craniofacial community, with your host, Dina Zuckerberg. - Hello and welcome to myFace, myStory, voices from the Craniofacial Community. Whether you're watching on YouTube or listening on Apple podcasts, click subscribe now so that you'll never miss a future episode. And if you're a fan of myFace, myStory, rate and review the program on Apple podcasts so we can get a message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. myFace, myStory is about people like us being seen and heard. About sharing stories within the craniofacial community and with others. Today I will be joined by Jeremy and Henry Shipp. Jeremy is a writer on Disney branded television's animated series Firebuds, about a team of young kids who are the children of first responders, and their talking vehicle sidekicks, as they embark on adventures together, and learn what it truly means to be a hero. Previously Shipp was part of the Emmy Award-winning writing team on Disney channels for Rapunzel's Tangled Adventure, with over a decade of experience as a writer for animation. His additional credits include Teenage Mutant Ninja Turtles, the Family Tools, and Dino Trucks. Shipp began his career as a production assistant at Dreamworks, while working his way up to pursue his passion for writing. Born and raised in rural upstate New York, Shipp currently lives in Burbank, California with his wife and two children. He is a graduate of Syracuse University where he majored in Visual and Performing Arts. Henry is delighted to be making his television premiere, on Disney's Firebuds. This role is especially important to him because like his character Castor, Henry was born with a cleft. It is so rare for characters to have facial differences and is a privilege to be a part of representing the cleft community. At a young age, Henry expressed a desire to advocate for cleft affected kids. Since he was seven years old, he has been baking cookies and selling them to raise money for Smile Train. Through this project, he has not only made donations to a special organization, but he has also raised awareness of cleft throughout his community. Henry is very active at his school. As vice president of his elementary school, he successfully advocated to the school board to get updated playground equipment that benefits students of all ages and abilities. He loves to sing in the school's annual musical review, play the drums in the band and help raise and lower the flag every week. Most of all though he loves playing with his friends, his little sister, Izzy and his tiny dog Wilbur. Welcome Jeremy and Henry. I really look forward to our conversation. - Thank you for having us. - Yes, so Jeremy, can you share with us what it was like for you when you found out that your son would be born with a cleft lip and palate? Take us back to that day. - I remember distinctly, because I was filming a video at the time. I was filming my wife's sonogram and the doctor seemed unusually muted in his energy and he calmly waited until we stopped filming, and then he said, you know, I've got something to tell you. Your son will be born with a cleft lip and palate. I can see it. And I didn't really know what that was. All I could understand was that my son wasn't going to be born the way I thought he was going to be born the way he, you know, the way I thought he would look. So I was really thrown for a loop, and my wife and I walked from that session kind of in a daze. And I remember calling my mother who was a nurse, so she kind of walked me through it. I was, I didn't really understand what, what we were, what to expect. - Right. - Then once I understood, you know, I resolved, you know, to myself that, you know, no matter what we were going to give him the best life, he would be, you know, he would come out just fine. I remember being kind of determined that would be the case, but I had a lot of mixed feelings. That was a, that was an interesting time for me. - Right. Yeah, it, it sounds very familiar. Except when I was born they, my parents didn't even know I was gonna be born with a cleft lip. And my father, I remember my father saying to me that when they found out like, she's gonna be just fine and everything's gonna work out, and she's gonna be able to do what she wants, and all of that. - Yeah. - It sounds great. - Yep, that's right. - So can you explain what a cleft lip palate is, for those that may not know? - Sure. When the, the face develops in utero, the skin kind of forms over the, the top of the teeth on the upper lip. And in Henry's case, and in many others, the, the skin just kind of stops, doesn't make that full connection. And very often that is combined with a cleft in the palate, so the roof of the mouth. And so Henry has what's called a fistula. It's got the space and the roof of his mouth goes up to his nasal cavity. And, you know, surgery has intervened and repaired much of that. He looks fantastic, but it's still, you know, it brought with it its own challenges, its own, you know, there was a, there was a hearing issue that needed to be attended to when he was, when he was young, and required speech therapy and he put in a lot of work, and he's doing well. But he was, so he's born with a, a bilateral cleft palate, a unilateral on the lip. - Okay. Okay, and Henry, how many surgeries have you had? - Four, I think. - Four. - Okay. So Jeremy, can you give us a brief synopsis of Firebuds and specifically Cleft Hood, without I guess giving too much away? - Sure. Firebuds is a Disney Junior show and it's about the kids of first responders and their first responder vehicles. And they live with their vehicles. They play with their vehicles, they live in the same house. So the main character is a young boy named Bo, who wants to be a firefighter, and he gets to live with his best friend, his roommate. - Uh huh - Flash, who happens to be a firetruck. So it's a lot of wish fulfillment. A young boy gets to hang out with his firetruck and he's friends with a young EMT on the make, and her ambulance, and a young police officer and his police car. So they go out on adventures, and they perform a rescue every episode. Cleft Hood is an episode that I pitched early on in the first season of the show. Where I suggested what if there was a car that was born with a cleft so we could have in our show the analogy of a real life cleft experience. And the creator of the show is Craig Gerber and he is responsible for Sophia the first, and Elena Avalor. He instantly cottoned to the idea, he said absolutely, I wanna do that. So briefly, the show is about a young car named Castor. Who has a cleft and he is due for a a repair surgery and it happens to be on the same day as a carnival that he really wants to go to. - Right. - So he ends up trying to go to the carnival despite the fact that he has this surgery that he needs. And this really confuses one of our main characters, Axl, the kid Ambulance. So she's trying to discern why young Caster is avoiding the surgery that he needs, to attend this carnival. - Yeah, I actually got to watch it. I loved it. It was great. So Henry, what was it like for you to audition for the role of Caster on the show and were you nervous? I know I would be. - I was terrified. Maybe one of the scariest moments of my life and they took me to a dark room with a bunch of people on Zoom and they were all talking and I couldn't hear them, so I had no idea if they liked what I was saying or not. - Uh huh. - But most of the time I was pretty sure that they did like what I was saying, but I wasn't a hundred percent sure. And that was what was really scary. - So he's describing the record, our audition, we did in the safety of our home on the laptop, and I sent that in and he got the part. The record itself, which, you know, we could circle back to if you want. But yes, it was an, a strange experience. It's at the height of the Covid Pandemic. - Right. - And there was all, it was Zoom, so there was, weren't many people in person, and they would frequently mute themselves so they could discuss notes. So it was very kind of strange experience. - Right. - I think for young Henry. - And Henry, did you have any acting experience before you even tried out for the part? - Not really. I mean, I've been in like short skits, but not really. This was my first ever acting thing. - That's great. Must have been exciting when you found out you got the part. - Yeah, I was dumbfounded. I really didn't think I would get it. - Love it. - Yeah, we were very taken by the, the news that he would play the part. - That's great. So in TV and movies it's often the villain who has facial differences, who has scars, and why is it important for our children, and even adults to see positive images on screen of those from the facial difference disability community. - Because so many children have scars and have facial difference. And I want them to see on their favorite movies and shows, other characters and kids that look like them who aren't villainous. And you said it, exactly. There are so many villains in, in media who have scars and that's supposed to represent their, I guess you could say, ugliness on the outside, which is unfair because I don't think scars are ugly. - Right. - And I want to see more positive portrayals of, of characters with facial difference so that kids can be inspired an

On this month's myFace, myStory podcast, host Dina Zuckerberg is joined by Dr. Kathleen Bogart, who will bring us on her journey growing up with Moebius Syndrome and why she pursued a PhD in Psychology that would shape who she is today. She will share some of her research including her most recent Facial Differences Disclosure Study as well as talk about the importance of mental health in the craniofacial community.  

Host Dina Zuckerberg sits down with Sora J. Kasuga, Face Equality Activist, to discuss her intersectional experience of living with multiple marginalized identities including being Japanese-American, neurodivergent, queer, and having a facial difference (lymphatic malformations and venous malformations on the left side of her face). Sora shares her journey of finding her voice as a disability justice and face equality activist, loving herself more, and how she hopes to instill that passion in others. The two also discuss understanding how others perceive our worth versus how we perceive our own worth, as well as Sora's wish to come together as a community to be visible and be activists on the world stage.   - [Announcer] Welcome to myFace, myStory: Voices from the Craniofacial Community, with your host, Dina Zuckerberg.   - Hello, and welcome to myFace, myStory: Voices from the Craniofacial Community. Whether you're watching on YouTube, or listening on Apple Podcasts, click subscribe now so that you'll never miss a future episode. And if you're a fan of myFace, myStory, rate and review the program on Apple Podcasts so that we can get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. myFace, myStory is about people like us being seen and heard, about sharing stories within the craniofacial community, and with others. Today, I will be joined by Sora J. Kasuga. Sora J. Kasuga, they she, is a face equality activist, writer, speaker, circus artist, and co-founder of CirqOvation. Their activism is fueled by the historical and present context of their many identities, Japanese-American, disabled disfigured, neurodivergent, and queer. Sora's advocacy aims to break down societal barriers, and bring awareness to the human rights issues at stake for those with facial differences. Throughout her 15 year career as a performer in the entertainment industry, she's experienced firsthand the ironclad system that erases and denigrates people with physical differences, starting with the lack of positive representation for facially different people, onstage, onscreen, in print, and throughout the media atmosphere. In a society built on shutting certain people out, Sora reaches for an inclusive world that emerges stronger because of our differences, not despite them. Welcome, Sora. I really look forward to our conversation.   - Aw, hi Dina! It's so good to be here. It's good to see you.   - Yes. I'm excited for our conversation. So, can you share with the audience about your facial difference, and describe your differences for those who may not know what it is? And how many surgeries have you had?   - Sure, yeah. So I was born with a couple rare conditions. I had venous and lymphatic malformations throughout my face, like on my eye, and on my tongue, and on the left side of my cheek, and the chin area. And you know, it's so weird, I usually don't lead with how many surgeries I've had, just because most of my surgeries were aesthetic. They weren't to help with, I mean, not all of them, but most of them were aesthetic. And I always feel a little weird, because I'm like, well, I had a certain number, you know, I did have a lot of surgeries. It's so weird, because I feel like that feeds into the medical model, and it's like, this is a personal thing for me. This is not right or wrong. I'm not, it doesn't come with judgment or criticism, but for me, I'm just like, oh well, you know, I am very, I feel very complicated about the surgeries that I had in my life. It's not all good, it's not all bad, but it's just very complicated for me.   - Right. No, I understand. I understand. So what was your childhood like for you, and what was your family like?   - My mom wanted to give me the most typical childhood possible. My mom, my whole family. And so I felt that love and support throughout my life, and I was, my mom was always saying you're normal, which is absolutely not true, but really wanted to give me that sense of just being a typical kid, and so I grew up not feeling any barriers, or I did, but just always trying to push through them, and I developed habits, right? So when I would walk into a room, I would look straight ahead, so I would block out a lot of the noise that I think a lot of other people in our community really took in, and I very consciously, I was just like, no. Tunnel vision, right? So if I walk into a room, I would look at where I was going, and I would just block everything else out. I'm also very good at suppressing things, which is a, that's not something to be proud of, but it's a survival technique that developed within me as a kid. And so the ability to block things out and suppress emotions, which years of therapy have helped to unlock that later in life, and work through those things, but yeah, so you know, growing up, I always think back, and as a kid, I really felt like I had a typical childhood, looking back as an adult and reflecting, now I know that it was not a typical childhood that I had, and that I had to develop a lot of survival strategies. But I had such a supportive community around me that it made it a lot easier.   - I can relate so much to what you're talking about, that sort of sense of normal childhood, the sense of being able to do, being told I could do whatever I wanted, but also the idea of suppressing emotions, and all of that, and just what you just said, I can relate so much to.   - Did you have siblings, Dina?   - Did I have what?   - Or, did you. Do you have siblings?   - I do, I have an older brother who's seven years older.   - Oh yeah? Was he like, he was super supportive also?   - Yes. And he was, I think, very much, I don't really quite remember, but I think very much a protector of me, you know? Especially when I was younger. Yeah.   - Yeah, I felt, you and I are similar. My sister is only three years older than me, but she was my protector, and she always was so kind, and just let me hang out with her and her friends, even though I was the annoying kid sister.   - Right.   - Right? Like, she was always just like, ugh fine. And would let me come along. And was just always very welcoming, and also protective. So it was really, yeah. That's the kind of community that I want for everyone.   - Yeah. I agree.   - Which unfortunately is not what everybody gets, but you know. I hope that we can move towards that.   - Absolutely. So as a kid, did you want to run away with the circus?   - No. I had no idea. I had no designs. I remember watching, my grandfather took me to go see Ringling Brothers, and Barnum & Bailey, as a kid, he took my sister and me. And I remember watching the trapeze artists, and the showgirls, and being like, oh, that looks like fun. But it was never like, anything in my brain that I could ever become a performer. I was actually on the fast track to becoming a doctor. So like, from the age of three, my grandfather was a doctor. He worked with the public health service, and I wanted to follow in his footsteps. I really wanted to heal people, and do good for humanity, and I thought being a healer would be that. And so that was my goal, through college. And then college, everything changed.   - Right.   - Everything, college, and a few major life events led me in a different direction, and then from that, I was going into the ministry at one point. I left that life path, and from there, I discovered circus. And I discovered, and this is all, this feeds into supportive community, right? And so in Cleveland, I found, I had always been a dancer. I loved dance as a kid. It just made me feel so strong and so powerful, to dance, like I felt like, and maybe this is the wrong mindset, wrong, but it wasn't, it was a way that I felt empowered as a kid. Like, when I was on stage I felt like, well when I'm on stage, people can see what I do, not my face, right?   - Right.   - Which is not quite what, like now looking back, I'm like, oh, that's not quite what I want for my childhood self. What I wish is that people would just look at everything, accept me for everything I was, and value that I was a dancer. Because I showed up at the studio, and I decided that I wasn't going to leave until they let me perform with them. And so I just kept on showing up until I became part of the company, and started gigging with them. They gave me my first professional contracts, and they gave me all the tools to become a freelancer. And they were incredibly empowering for me. Like, my face was never an issue with them. Never, not once was I asked critically about my face. You know, as we got to know each other, and share stories, it came up. But it always does when we're with our family and friends who really care, right? But it wasn't the thing that was on the forefront of their mind when I showed up at the studio. And they empowered me to then go on, one thing led to another, and landed me in New York City, and that was where my real full-time professional career started.   - Right. So you've been a professional entertainer for almost 20 years now?   - Yeah, yeah.   - So, how did you, so what was it like when you started working in the industry, and how hard was it to break into the industry as someone with a facial difference?   - Yeah, that was really, so that was a shock, I will say. So coming from Cleveland where I felt unconditionally loved and supported as an artist, then once I went to circus school. Like, okay. So you know, in circus school, I was offered a contract for the next touring season on a circus. And when I got back, so that circus was in the UK. When I got back to the United States, a bunch of us got called into the boss' trailer to sit down and have a chat, and he looked at all of us, and he said, I want you all on next year's tour. And so we were celebrating, and we thought that was really great, and we all went back t

On this month's myFace, myStory podcast, host Dina Zuckerberg is joined by Amy Mendillo – author, advocate, and parent of a child born with a cleft lip and palate. Amy discusses themes from her new parent guidebook, I've Just Seen a Face: A Practical and Emotional Guide for Parents of Children Born with Cleft Lip and Palate, including the roles of caregivers as key advocates in their child's journey, both in and out of health settings. She also touches on the emotional issues that can arise for cleft parents before and during their baby's first year of life, such as fears related to bonding, sadness and loss when a baby is unable to breast-feed, and the complex feelings caregivers experience when a baby's face changes through surgery. Learn more about the book, I've Just Seen a Face, at: www.amymendillo.com. To explore more parent guides and family resources, check out www.myface.org/parent-guides.   [FULL EPISODE TRANSCRIPT] - [Announcer] Welcome to "myFace, myStory: Voices from the Craniofacial Community", with your host, Dina Zuckerberg.   - Hello and welcome to "myFace, myStory: Voices from the Craniofacial Community". Whether you're watching on YouTube or listening on Apple Podcast, click subscribe now, so you don't never miss a future episode. And if you're a fan of "myFace, myStory", rate and review the program on Apple Podcast, so we can get on messages of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a clef lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. Today, I will be joined by Amy Mendillo. Amy Mendillo is a writer, author, and advocate. Her book, "I've Just Seen a Face" is a practical and emotional guide for parents of children born with cleft lip and/or palate. Amy holds a master's in public policy from Brown University and master's in bachelor's degrees in music from Northwestern University and the Oberlin Conservatory of Music. She has consulted on state level health issues, advocated for local and city level policy, and worked as a writer-editor for the American Cleft Palate Craniofacial Association, where she currently serves on this family resources committee and board of directors. A proud cleft parent and adoptive parent, Amy lives with her family in Providence, Rhode Island. Welcome, Amy. I look forward to our conversation.   - Me too, Dina. Thank you so much for having me. It really is a pleasure to be here. I am a big fan of this show.   - Oh, thank you. So, can you share when you first learned that your daughter would be born with a cleft lip and palate? And take us back to that day?   - Yes. My husband and I learned about our daughter's diagnosis at a prenatal ultrasound at around 20 weeks gestation. And we had come into that experience with a long history of infertility. We tried for years to conceive and carry a pregnancy, and we ultimately adopted our first child joyfully, and then subsequently returned to the fertility clinic and were able to become pregnant and carry this pregnancy. And we ultimately learned of our daughter's diagnosis at around week 20. And so, at every turn, our history involved bad news. We would, at every ultrasound, at every test, every measure of progress, we were accustomed to hitting roadblocks. And so, when we came into this 20-week ultrasound, we were in a kind of position where we were braced. That said, I was totally taken aback by the news. I remember when the doctor was clicking and blinking and the tones were so soft and everyone was trying to stay, all the professionals were trying to stay calm, but inside, feeling this torrent of feeling and feeling almost sickened and learning this news that our daughter would be born with cleft lip and palate. And I think there were two things involved with that. One that I had heard of clefts. I had heard of, I knew what it meant, what a cleft lip meant, what a cleft palate meant. But I was unaware and my husband was unaware of all the other things that are involved. The hearing can be involved, that speech is involved, the dental health, that appearance is involved, that a baby is unable to breastfeed or consume milk through its traditional manner. That part really felt overwhelming. And also, the element of what other health conditions could be at play, that felt really unsettling. And I know that all of us are subject to health problems and that a pregnancy by definition, evokes a sense of risk. But we're intimately more aware of it now that we had learned this news. And so, we underwent future more tests and ultimately ruled out as far as we could other conditions. A cleft lip and palate can be, as you know, can be isolated, but it could also occur in the presence of a genetic syndrome, meaning that other differences are present at birth. And ultimately, our daughter was born with isolated cleft lip and palate, but that process of undergoing that future, of that testing felt unsettling.   - I think about my own parents. They didn't even have the ability to find out ahead of time. So, they didn't find out until I was born. So, we certainly have come a long way into understanding, at least to know before, which I guess we can talk, we'll talk a little more about that a little later. Can have its positives and its negatives, right?   - Absolutely.   - when you find out ahead of time. So, for those that might not know, what is a cleft lip and palate and how common is it?   - Yes, a cleft lip is an opening in the upper lip, opening or openings. A cleft palate is an opening in the roof of the mouth that occur at birth. The incidents, according to the American Cleft Palate Carniofacial Association, is about 1 in 600 births. But that statistic does vary depending on the type of cleft. And clefts occur during the very early stages of a pregnancy when the parts of the head and face to come together from the sides toward the center and fuse. And so, when a cleft happens, that process fails to happen. So, there's no missing material necessarily, rather a failure of those two parts of the head to fuse.   - Okay. So, why did you decide to write this book?   - Yes. I decided to write a book based on two main observations. One was that that moment of learning the news, that feeling of overwhelm, that the crisis resolved. And after time and with experience, my husband and I realized that that moment was not what the rest of our daughter's life was going to be about. And I wanted to share that idea and with other families who might be similarly worried. And to include a lot of other voices of other parents as I did.   - Right.   - And the second observation was really a little bit more practical, and that was that my husband and I looked for and couldn't quite find an all-in-one current guidebook for cleft lip and palate, something that not only offered basic explanations of the condition and its treatment, but also addressed the myriad questions we had along the way. Both in a practical sense, on the ground, day-to-day questions having to do with treatment and operations and recovery. But that also discussed the emotions that come up during that time. It can be really some very sensitive issues. So, I decided to create one. I have a background in classical music. My first career was as a professional oboist, but I, since I had switched careers, went into public policy with an emphasis on health and research and writing. So, I created this book, which has now finally arrived after many years. It's called "I've Just Seen a Face, A Practical and Emotional Guide for Parents of Children Born with Cleft Lip and Palate, Year One and Beyond". And I know it's a little bit of a cliche to sound, to say that it feels like a birth, but it actually does in my case.   - I've heard a lot of writers say that. It's almost like giving birth to a baby.   - Yes.   - So, I did manage to read a lot of it. I will say it's a lot of information. What I loved about the book is if you wanna just look at this, you can go to that chapter.   - Right.   - Like you said, it's really not meant to be read from cover to cover necessarily.   - Right. Yes.   - But it's a great resource. And what I also love is that you do address the emotional side of it. 'Cause I think that is just as important as well and not always discussed in the day to day,   - Right.   - especially when you're going to all the medical doctors. You're so focused on the medical side of it, but not really addressing the emotional side of it, so.   - It's so important.   - Yeah. So, how did you decide to do your research for this book?   - Yes. The research for this book draws in part from my personal experience. I narrate the book as a fellow parent. And I do include four short personal essays that are interspersed throughout the book about my experience. But it draws more importantly from in-depth interviews that I conducted anonymously with about 150 people, some of which were repeated over time, half of whom were fellow cleft parents, parents of children born with cleft lip and palate. And the other half were providers, specialists from all of the cleft-related disciplines, surgery, nursing, speech, EENT and audiology, dentistry and orthodontics, genetics, pediatrics, and more. I might not be exhausting that list, but my idea was to provide words of wisdom from these folks. It also draws from hundreds of academic articles, medical textbooks, published materials for families and the like.   - Yes, it's very thorough, I must say, which I really liked. That's great. So, when can the cleft diagnosis be detected on an ultrasound? And what are the positive and negatives of finding out during pregnancy, which we just touched on.   - Yes, which we... I'm glad you actually asked about the negatives, because there are some, and clefts can be diagnosed at around week 20