Ear Community shares patient testimonials about Microtia and Atresia during a listening session at the FDA

Ear Community presents at the FDA during a listening session on Monday, February 26th, 2018

On Monday, February 26th, 2018, Ear Community members went before the FDA during a listening session to share our stories about Microtia and Atresia, asking for any newer technology for ears to be approved sooner than later. We shared our stories of worry, fear, concern, bullying, job discrimination, surgical complications, low self esteem and lack of self confidence, along with triumphs and surgical successes and finding happiness in who we are as parents and individuals who are affected by this rare congenital deformity that does not discriminate.

Ear Community was the first nonprofit organization with a rare cause that was scheduled to present at the FDA on the first day of Rare Disease Week, which is now recognized by the FDA, making our testimonials even more special for the FDA attendees who were in our listening session. We had about 30 top level directors and division owners in our listening session representing multiple divisions of the FDA including Ophthalmic, and Ear, Nose and Throat Devices, Plastics and Reconstructive and Surgery Devices Branch, Division of Surgical Devices, Ear Nose and Throat Devices Branch, Office of Tissue and Advanced Therapies, Rare Disease Program, Genetics, Pediatrics and Health Science Department, and Orphan Products.

This was a huge milestone for our Ear Community Organization, the individuals within our organization, and the Microtia and Atresia community, globally.

The following individuals were selected by Melissa Tumblin of Ear Community to be a part of our listening session as we shared our testimonials:

-Camilla N Gilbert, a 35 year old from Cincinnati, OH who was born with bilateral microtia and atresia who has chosen not to have surgery. Camilla shared her story about how she was bullied, attacked, and picked on while growing up because of being born without ears. Melissa Tumblin has known Camilla and her family for 6 years now. Camilla was Ear Community’s first college scholarship recipient and the recipient of the Oticon Medical Focus on the Patient Award in which Ear Community nominated her for. Camilla is also a past Ear Community Board Member and the picnic host for our Cincinnati picnic for 2018.

– John Savage, a 25 year old from Aurora, CO, who was born with bilateral microtia and atresia who tried both prosthetic ears and currently has (2) Medpor ears. John shared his story about his struggles in life with pain and scarring from prosthetic ears and complications with Medpor, including almost dying on the operating table because of having an adverse reaction to anesthesia following the procedure. Melissa Tumblin has known John and his family for 8 years now after meeting his mom, Carol Savage, when her daughter, Ally, was just a baby. John is a hearing device recipient through Ear Community. John and his family have attended our Ear Community picnic in CO since 2011.

– Daniel Mendoza, a 17 year old from Houston, TX, who was born with unilateral microtia and atresia of his right ear who has rib graft surgery. Daniel shares his feelings about why he wanted an ear and how he feels about his rib graft ear today. Daniel also shares how he recalls how his family would make many trips to the doctor while getting his rib graft ear made during the different stages of surgery. Melissa Tumblin has known Daniel and his parents, Melanie and Nathaniel, for seven years now when Daniel’s family was trying to decide on which Baha Daniel needed as a hearing device. Melanie is a past Ear Community Board Member and a past Ear Community picnic host.

Roland Eavey, MD, Clinical Director of the Vanderbilt University Medical Center ENT and Otolaryngology Department and the Microtia and Atresia Clinic in Nashville, TN validated each patient testimony during the listening session and discussed how new technology could make a difference for children and adults who have Microtia and Atresia. Melissa Tumblin has known Dr. Eavey for the past 5 years. Dr. Eavey is truly a legend in the Microtia and Atresia world, one who has been involved with genetic research for Microtia and Atresia and reconstructive surgery for the past 30 years.

– And, Melissa Tumblin, Founder and Executive Director of Ear Community, mom to Ally, an 8.5 year old who was born with microtia and atresia of her right ear who has not yet had surgery from Broomfield, CO. The Ear Community Organization was asked to go before the FDA to share patient testimonials during a listening session in hopes of newer technology becoming available for an even more amazing ear than what already exists today, an ear made of an individuals stem cells that could be printed to look exactly like the other ear utilizing 3D printing technology. The organization looks forward to collaborating with the FDA on future research regarding newer technology becoming available in the near future.

This was an opportunity of a life time for each one of us and an amazing experience for all of us on our journey with microtia and atresia. Monday, February 26th, 2018 also marked the birthday of the Ear Community Founder’s mother, making the day even more special as Melissa Tumblin recalls her mother always wanted to give her daughter her ear, if she could. So, all of this was absolutely meant to be! We are excited for our next steps as we wait to receive information to collaborate further with the FDA.