
The CARE Team presents at the 2025 ACPA Annual Meeting
What a wonderful time attending the ACPA – Annual American Cleft Palate Craniofacial Association’s Meeting, last week in Palm Springs, CA! It was wonderful seeing so many friends, colleagues and advocates again! I am always reminded at ACPA of how grateful I am knowing how many medical professionals, researchers and advocates continue working on what is needed for our children and families!
This year, I am especially proud of our panel that presented on the importance of integrating family stakeholders when it comes to research and community outreach for rare causes. Our panel presented on “Enhancing Craniofacial Research: Integrating Family Stakeholders”, sharing how important collaboration is between both family stakeholders and with medical professionals. Our CARE Team also made many informative presentations during this year’s meeting!
I am so pleased with the important and much needed work our CARE Team has completed over the past 5 years on our grant project, which has helped improve the caregiver experience for microtia, atresia and craniofacial microsomia families! When navigating your way as a parent of a child who is born with a rare congenital anomaly, there is often a lack of information making it difficult to find answers, including limited research being available or knowing where to find it, not to mention being given any kind of guidelines that can help families find their way. The information that our CARE Team has gathered and presented on has absolutely made improvements for caregivers, which in turn will help make things easier for the next families and medical professionals as we travel our journeys, together.
Thank you to everyone on our CARE Team for all the good we do together! Thank you to Adam Levy and everyone at the American Cleft Palate Craniofacial Association for creating such an important meeting for so many to come together annually and share to make things better!
Founder – Executive Director
- The CARE Team presents on “Enhancing Craniofacial Research: Integrating Family Stakeholders”.
- The CARE research team
- Amy Schefer and Melissa Tumblin at ACPA
- Melissa Tumblin (Ear Community), Amy Schefer (Advocate Angel) and Dr. Carrie Heike (Seattle Children’s)
- Dr. Angelo Leto Barone (Nemours Children’s Health) and Melissa Tumblin
- Melissa Tumblin and Dr. Michael Golinko (Vanderbilt)
- Dr. Steven Goudy (Children’s Health Atlanta) and Melissa Tumblin
- Melissa Tumblin and Diego Gomez (medical school student)
- Aaliyah Booker and Khadija Z. Moten (CCA Kids) and Melissa Tumblin (Ear Community) and Amy Schefer (Avocate Angel)
- Roger Rickard and Melissa Tumblin
- Erica Klauber (CCA Kids) and Amy Schefer (Advocate Angel) and Melissa Tumblin (Ear Community)
- CARE Team
- Dr. Angelo Leto Barone (Nemours Children’s Health) and Melissa Tumblin (Ear Community) at ACPA
- ACPA advocates
- ACPA advocates





























































The Ear Community Organization’s Board Members are an invaluable resource when it comes to microtia, atresia and craniofacial microsomia! At Ear Community, we are all on the same journey and are willing to help others who are in the same situation in our community!Ear Community’s Board members either have microtia, atresia or craniofacial microsomia, are a parent of a child born with our rare cause or are a medical professional or educator.
Melissa Tumblin, Founder of the Ear Community Organization, is proud to be a presenter at this year’s American Cleft Palate Craniofacial Association Meeting taking place in Palm Springs, CA along with the CARE Study Team, a research team Ear Community has proudly been collaborating with for the past five years!
Families travel from surrounding states & other countries just to come to our Ear Community picnics! Our priceless picnics are FREE to Microtia & Atresia families! Join us for lunch, share your journey, learn about your options, enjoy lots of fun entertainment, watch the kids play & maybe even make a new friend!
In honor of World Hearing Day today, March 3, 2025, the Ear Community Organization was able to donate (1) Oticon Medical Ponto 5 Mini bone conduction hearing device and soft band headband to this sweet little boy, named Romeo, in Canada! Romeo is the proud recipient of a Ponto 5 Mini bone conduction hearing device, donated by
Montgomery was able to have her hearing devices programmed on World Hearing Day thanks to Pax’s Ear Fund through our Ear Community Organization! Montgomery was born with bilateral microtia and atresia in Indiana. Even though Montgomery’s family’s insurance provider recognizes coverage for a bone conduction hearing device, the family’s insurer still denied the fitting and programming for her hearing device. Montgomery’s hearing device would not work properly or benefit her hearing loss unless programmed. Thanks to Pax’s Ear Fund, made possible by a sweet little boy named Pax and his Family, Montgomery’s audiologist, Dr. Jayne Fields in Indiana, was still able to give the gift of hearing to Montgomery thanks to Pax’s Ear Fund offering reimbursement for this service that was denied through the family’s insurance! Here is a picture of Montgomery reading one of her favorite books on the way home from her audiology appointment, showing how she is able to go on with her day by hearing through her Oticon Medical Ponto 5 bone conduction hearing devices she wears! #WorldHearingDay
If an individual is not born with hearing loss, hearing loss can sneak up on us when we least expect it! Be informed and know what your options are!
December 30th, 2024





