During the first week of May, the CARE Study Research Team attended the ACPA, American Cleft Palate Association, conference in Raleigh, North Carolina! Our CARE Team has been working on our grant project for the past four years and was finally able to come together in person! Our research team did an amazing job at the conference presenting nearly 20 total presentations, including presenting during the poster session. Our team’s presentations included feeding techniques to what the caregiver’s concerns are as well as surgical options from medical providers. We also enjoyed visiting the Dental School at Chapel Hill where we had an all day meeting!
The CARE Team is comprised of a interdisciplinary group of more than 20 members from 7 countries including members who are advocates, researchers, and healthcare providers. Our team works out of two primary sites – Seattle Children’s Research Institute and the University of Bristol, West England in the UK. Our research team also includes a number of subcommittees and an Advisory Council as well. Ear Community is proud to represent the microtia and atresia community during this grant project! 
Ally, Melissa Tumblin’s daughter, was one of the many children highlighted during our team’s presentations as well as promoting awareness about the Ear Community as one of the nonprofits serving the microtia and atreisa and craniofacial microsomia community. During our visit to Raleigh, our CARE Team hosted a community night where we enjoyed having Dr. Shannon Culbertson and Chris Bowman join us, both members of the Ear Community Organization. 
Our research team includes the following members: Dr. Carrie Heike, Dr. Ameilia Drake, Dr. Kelley Evans, Dr. Craig Birgfeld, Dr. Maarten Koudstaal, Dr. Christy McKinney, Dr. Leanne Magee, Dr. Nicola Stock, Dr. Alessia Johns, Dr. Jade Parnell, Dr. Canice Crerand, Dr. Kristin Billaud Feragen, Bruna Costa, Laura Stueckle, Kristen Daniels, Angela Mills, Albert Hsu, Erik Stuhaug, Zach Karpen, Amy Schefer and Melissa Tumblin. To learn more about our work, please click here.
While at the American Cleft Palate Association conference, we were fortunate enough to meet some pretty amazing people! – Advocates and partner nonprofit organizations as well as getting the chance to catch up with some amazing medical professionals that Ear Community has gotten to know over the years! The ACPA really shines a light on craniofacial and cleft challenges along with many rare causes. It was very educational and heartwarming at the same time – from hearing key note speaker presentations to meeting other parent advocates and individuals stepping up to make a difference, together, while promoting advocacy and awareness about the many syndromes that affect our beautiful children and loved ones.
Melissa Tumblin of the Ear Community Organization had the privilege off meeting the beautiful women behind the MyFace Organization and CCA Kids! It was an absolute honor meeting Stephanie Paul, Dina Zuckerbuerg and Sandy Gilbert from MyFace and Erica Klauber from CCA Kids, the Chidren’s Craniofacial Association! Melissa also had the opportunity to finally meet Adam Levy, the Executive Director of the American Cleft Palate Association, including Engagement Manager, Erin Brenneman! It was also wonderful to finally meet Dr.
Amelia Drake from Chapel Hill and Roger Rickard of VoicesInAdvocacy who has been incredibly supportive in advocating for important pieces of legislation like Ally’s Act, H.R. 2439/ S. 1135 that matter to the communities we serve! A special thank you to the ACPA for sharing about Ally’s Act, H.R. 2439 & S. 1135 during the opening reception and throughout the entire conference! It was also great to finally meet the members of the ACPA Advocacy Board during our meeting!
A bonus surprise to see Dr. Siva Chinnadurai, Dr. Noel Jabbour, Dr. Steven Goudy (Vice President Elect for the ACPA), Dr. Michael Discolo and Dr. Michael Golinko at the ACPA! A special thank you to Dr. Jabbour for mentioning Ear Community during his presentation as his go to resource for microtia and atresia for families! Thank you for always sharing about Ear Community with your microtia and atresia patients!
Here are some great moments from last week!
Thank you,
Melissa Tumblin
Founder – Executive Director
Ear Community
