Advocacy - Be The Change: A Conversation with Melissa Tumblin

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