myFace, myStory Dina Zuckerberg, myFace

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 par

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 tha

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

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