• Facing The Lens: Adam Pearson on Film, Advocacy and Changing the Narrative
    May 22 2025
    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.
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    39 mins
  • Breaking Beauty Standards: Paige Billiot's Birthmark Advocacy | myFace, myStory
    Mar 26 2025
    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...
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    42 mins
  • Empowering the Facial Difference Community with Special Guest Adele Capitella-Liu
    Feb 22 2025

    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

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    41 mins
  • Defining Beauty: A Conversation with Celina Leroy
    Oct 15 2024
    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...
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    37 mins
  • Taking Control of the Narrative
    Sep 15 2024
    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...
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    51 mins
  • Two Sides to a Face: A Journey from Adversity to Advocacy
    Aug 15 2024
    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, ...
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    43 mins
  • Finding Courage, Finding Self: A Conversation with David Cohen
    Jul 2 2024
    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 ...
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    44 mins
  • Stronger Together with Megan Gaydosh and Tiffany Kerchner
    Jun 15 2024
    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 ...
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    38 mins