myFace, myStory Dina Zuckerberg, myFace

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

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 h

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

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 s

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 shou

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