Sean Callinicos (Sonova), Ryan Shuman (Ear Community), Keesha Pfeiffer (Cochlear Americas) and Hilary McManus (Oticon Medical) advocate for Ally’s Act, H.R. 4606 in Washington, DC during the 119th Session.

Ally’s Act, H.R. 4606 was introduced again on July 22nd, 2025. Before our bill was reintroduced during the 119th session, Ear Community and some of our endorsers and advocates were already hard at work advocating in Washington, DC on May 2nd and during July 8th, 9th and 10th of this year! Ally’s Act, H.R. 4606 is a small but focused bipartisan bill requiring private insurers to cover bone anchored hearing device systems and cochlear implants for children and adults from birth to age 64. Bone anchored hearing systems and cochlear implants are the only hearing devices some children and adults can benefit from due to having specific hearing loss types, making them medically necessary.

Sean Callinicos and Ryan McDevitt advocating for Ally’s Act, H.R. 4606.

These implantable hearing devices are NOT traditional hearing aids and cost tens of thousands of dollars. Insurance coverage is unpredictable and inconsistent. Of the half million people who require these hearing devices, approximately 200,000 are abandoned by their insurance, needing the critical coverage this bill ensures. Ally’s Act is a narrowly targeted yet deeply impactful bill that is much needed and would make coverage consistent!

A million THANK YOUS to our Advocacy team that included our lobbyists (who have donated their time and services to advocate for our bill) and to our endorsers and advocates (who also donated their time) for sharing their stories! Thank you for your continued support, your passion and determination to continue championing this bill toward passage! Your willingness to advocate, sharing personal stories of why bone anchored hearing devices and cochlear implants matter to them or to their children and the need for private insurers to cover these devices, matters! Advocates in our group during this last Fly-in included parents of children who benefit from these specialized hearing device implant systems, to adults who personally wear these devices allowing them to have the careers they dream of, to the very hearing device manufacturers who consistently see customers denied coverage by private insurers for these hearing devices. Thank you to everyone who came together to advocate recently and to those who will continue to champion our bill and help educate why Ally’s Act is needed. Your voices are what is needed in order to educate why Ally’s Act is so important!

A very special thank you to the following advocates:
Thank you to Sean Callinicos of Sonova for all of your help with Ally’s Act over the past 4 years. Sean has been ranked as one of The Hill’s top lobbyists over the years and we are proud to have him championing Ally’s Act with us! Thank you to Ryan McDevitt of Bristol Myers Squibb for not only leading many of our meetings with his experience in public affairs, but as a father of a child who would benefit from the services under Ally’s Act – Thank you, Ryan, for fighting for children like Brooke and Ally! Thank you to Ryan Shuman for leading our efforts as our Government Affairs Advisor for Ear Community during our Fly-ins this summer and for helping give us the opportunity to have our voices heard when meeting with Congressmen and Senators in DC! Thank you to Bridget Dobyan of the Hearing Industries Association for helping us advocate and for sharing your own personal journey as a bone anchored hearing aid user and how your career depends on hearing! Thank you to Keesha Pfeiffer of Cochlear Americas for advocating for the hearing device industry, but for also advocating for your son, Josh, who also depends on a bone anchored hearing device just like Ally and Brooke. Thank you to  Dr. Hilary McManus of Oticon Medical for advocating as an audiologist who understands why these hearing devices give people their lives back, but for also advocating for so many with hearing loss who are at a loss when insurers deny coverage for these hearing devices. And, thank you to Valerie Eastwood of MED-EL for helping us advocate as an expert attorney over quality and compliance for these hearing devices, seeing how often they are denied for those who need them most!  Thank you for advocating for all of the children and adults who are denied the opportunity to hear when it comes to lack of insurance coverage for these specific hearing devices.

We are asking the community to please write to, email, call and schedule a meeting with your Congressmen asking them to cosponsor Ally’s Act, H.R. 4606. We want Ally’s Act to pass! For more details on how to advocate for this piece of legislation, visit Ear Community’s website here. We ask that you write a personal letter to the DC office location (templates are on the website) and include the Ally’s Act 1-pager, list of endorsers and fact sheet. Please follow up with a phone call 2 weeks later to the DC office of your Representative.

Here are some memories captured during our Fly-ins on Capitol Hill so far this year!
Melissa Tumblin
Founder – Executive Director
Ear Community

Meet Daxon! Daxon is five years old and was born with unilateral microtia and aural atresia and lives in New Brunswick, Canada! He is one of the many children who was born during Covid-19. To Daxon’s parent’s surprise, he was born without his right ear. Even though Daxon is your typical five year old who is full of energy, he has been struggling with his hearing over the years.

When Daxon’s mom, Felicia, learned more about his conductive hearing loss, she realized he was struggling to hear. At the time, he was able to receive a loaner bone anchored hearing aid (Baha) from their audiologist when he was just a couple of years of old, but had to return the loaner device after so many months. While Felicia watched Daxon thrive with his loaner Baha, she knew she had to obtain one for him that could be his own. Daxon was then able to receive another loaner device for a few months when he was in preschool and she saw how he would ask for his Baha in the morning before school and how he had developed a routine wearing it. Felicia said “…he would ask for it and wear it proudly.” Felicia then began the process to obtain a Baha through her healthcare provider with her audiology department. To her surprise, she discovered that a Baha was going to cost nearly $6,000.00 CAD. She also learned that her insurance provider would not cover a hearing device for Daxon at this time and only covers (1) surgically implanted device in a lifetime in their province.

After realizing that Daxon wasn’t going to be able to obtain a Baha through their insurance, she and her audiologist, Dr. Chantale Melanson, found our Ear Community Organization with Ear Community’s Board of Directors voting to help Daxon receive the gift of hearing. On June 12th, 2025, Daxon was fitted with his new Baha 6 Max from Cochlear Americas donated through our Ear Community Organization. Thank you to Dr. Melanson of The Moncton Hospital for donating her time and services to program Daxon’s new Baha! Thank you to Daxon’s mom, Felicia, for endlessly advocating to help her son hear! A special thank you to Keesha Pfeiffer, Manager Health Policy Strategy and Advocacy, at Cochlear Americas, for helping Daxon receive this gift of hearing so he can #Hear Now And Always! This request to help Daxon means a lot to Keesha as her son also has microtia and atresia and she has helped our Ear Community Organization for many years with these requests to help children and adults hear! Thank you for helping us with this opportunity for Daxon! “Cochlear is the global leader in implantable hearing solutions, and has provided more than 750,000 implantable devices – more than any other company – helping people of all ages to hear and connect with life’s opportunities.” Since 2011, Cochlear Americas is a proud Platinum Sponsor to the Ear Community Organization, helping the microtia and atresia community. Thank you Cochlear Americas for being a leading company behind the hearing device technology that helps children like Luis benefit when it comes to restoring hearing loss! Children and adults with microtia and atresia can only benefit from the use of a bone conduction hearing device because of specific related conductive hearing loss.

Thank you to everyone for coming together to help Daxon hear his best and to help make hearing possible for him because of the amazing advocates in his corner! We are happy for Daxon to be able to hear so much better! Daxon sure is a cutie! Here are some great pictures from his fitting!

Melissa Tumblin
Founder – Executive Director
Ear Community

Meet Luis! Luis was born with bilateral microtia and atresia and lives in North Carolina. He’s your typical fun loving five year old who loves school! Luis’ mom, Obdulia, has made sure he’s had the help he needs at school through IEP services and help from his school therapists who work with him everyday to develop his language skills. However, Luis begun struggling with his hearing lately in the classroom and at home due to his bilateral hearing loss.

Obdulia realized Luis seemed to be missing out on a lot more than usual during conversations. She decided to get his hearing tested last year. When meeting with their audiologist, Dr. Ashleigh Starnes of Atrium Health, Obdulia was educated about a hearing device available called a bone anchored hearing system or a BAHS that could help Luis hear better! Obdulia and Luis were excited about obtaining a BAHS and began the process for a bone anchored hearing device. Unfortunately, Luis’ mom also discovered the challenge of trying to obtain this hearing device for Luis after realizing they could not afford this hearing device, let alone two hearing devices so he could have one for each ear to help him hear his best.

While waiting to hear back from Medicaid to see if a BAHS could qualify for coverage, Luis’ family sadly became one of the many families who were victims of Hurricane Helene in the Western Area of North Carolina. Still recovering and working hard to pick up the pieces from this disaster, the family did hear back from Medicaid, but unfortunately Luis was denied coverage and the access to obtain a bone anchored hearing device.

Finally, Luis and his family found some hope for him to hear better trying to find other resources! Obdulia took a chance and was directed to NC Beginnings, a helpful resource in their area where they were connected with Gheydis Paredes, a Parent Educator Bilingual Spanish interpreter. Gheydis began helping Obdulia look for other resources that could maybe help Luis hear by obtaining a hearing device. Together, Gheydis and Dr. Starnes found the Ear Community Organization and applied for Luis to obtain a hearing device!

On May 21st, Luis received the gift of hearing with two Baha 6 Max bone conduction hearing devices! The smile on his face shows how happy he is wearing his bone anchored hearing devices! If it were not for Gheydis Paredes understanding the need for Luis to be able to hear and realizing how much his family was struggling, Luis wouldn’t be able to hear today! Thank you for reaching out to our Ear Community Organization to help Luis! A special thank you to Dr. Starnes for donating her time and services to fit and program both of Luis’ new Baha 6 Max hearing devices from Cochlear Americas! Gheydis says, “She is seeing the progress Luis has made already with his Baha devices, which is incredible! I can only imagine the possibilities he will have now!” Dr. Starnes is grateful for being able to help give the gift of hearing to Luis and that she is “So happy to see Luis benefit from binaural hearing thanks to both Baha devices!”

A special thank you to Keesha Pfeiffer, Manager of Health Policy Strategy and Advocacy at Cochlear Americas, for making sure Luis received his two Baha 6 Max bone conduction hearing devices and for helping us with processing this gift of hearing! This request to help Luis means a lot to Keesha as her son also has microtia and atresia and she has helped our Ear Community Organization for many years with these requests to help children and adults #Hear Now and Always! Thank you for helping us with this opportunity for Luis! “Cochlear is the global leader in implantable hearing solutions, and has provided more than 750,000 implantable devices – more than any other company – helping people of all ages to hear and connect with life’s opportunities.” Since 2011, Cochlear Americas is a proud Platinum Sponsor to the Ear Community Organization, helping the microtia and atresia community. Thank you Cochlear Americas for being a leading company behind the hearing device technology that helps children like Luis benefit when it comes to restoring hearing loss! Children and adults with microtia and atresia can only benefit from the use of a bone conduction hearing device because of specific related conductive hearing loss.

It is always wonderful when so many organizations can come together to help someone in need! This is what community is all about! The Ear Community Organization is so happy to have helped Luis receive the gift of hearing! Our organization is grateful for our Sponsors like Cochlear Americas and our donors for helping make struggles like this turn into a happy solution! We are looking forward to hearing how Luis continues to thrive in school and outside of the classroom with his new Bahas! Thank you again to Dr. Ashleigh Starnes at Atrium Health, Gheydis Paredes at NC Beginnings, Kesha Pfeiffer at Cochlear Americas and the Ear Community Organization! Most of all, thank you to Luis’ mom, Obdulia and family, for never giving up on Luis and for helping him find the hearing he needs!
Melissa Tumblin
Founder – Executive Director
Ear Community

Poppy is the star of the show at the D & L Nursery Customer Appreciation Day and fund raiser for the Ear Community Organization. Poppy and Family shared their story and why nonprofit organizations like Ear Community matter when you cannot find the answers you are looking for. (May 2025, Ocklawaha, FL)

The Cutchin Family run the D & L Nursery in Ocklawaha, Florida where they hosted their annual Customer Appreciation Day in May. Each year, the nursery picks a charity organization to help give back to that they are grateful to, just like they are grateful to their customers. This year, they selected The Ear Community to give back to to say “thank you” for being there for them when their daughter was born & they couldn’t find the answers they were looking for.

In 2019, Katie & David Cutchin had their beautiful daughter, Poppy. They noticed one of her ears was underdeveloped, but due to the rarity of Microtia & Atresia, their doctors at the hospital were not able to provide much information regarding what it could be or why her ear canal was closed.

Katie explains that “Being a new mom and seeing that your baby has a congenial anomaly that doctors can’t explain sends you on an emotional roller coaster and down a rabbit hole of google searches, looking for the answers the doctors didn’t have. While self researching, we discovered that our daughter had what is called Microtia and Atresia, yet there wasn’t a whole lot of information about it until we happened to come across the Ear Community’s website!” In a testimonial for the organization, Katie explains that “It was during this time her family was fortunate to be able to have a conversation with the organization’s Founder, Melissa, and be put in touch with other other families who are on the same journey. Finding the Ear Community Organization and being able to utilize the information available from the Ear Community, helped our family be able to advocate for Poppy, locate doctors who are familiar with her condition, have proper hearing testing done, and form a plan of action for better hearing with the help of a hearing device that wasn’t mentioned to us. We were able to gain valuable information on what the future may look like for Poppy should we opt for surgical reconstruction or a bone anchored hearing device. Without the Ear Community, we truly believe we would have been lost and not have been able to advocate as well for our daughter which could have led to speech delays, trouble with learning in school, and added stress to the family. It is invaluable to have a place to connect with other parents & learn about other people’s experiences.”

The Cutchin Family’s story is very similar to that of the Tumblin Family’s, which is why the Tumblin Family founded Ear Community Organization in 2010. As a result, Ear Community has helped microtia families learn more about this rare cause and the options available to those with hearing loss because of these conditions, helping them know they are not alone. “The Ear Community has been essential for many families like ours in finding the necessary resources for our loved ones living with Microtia and/or Atresia. They are an amazing non profit that we are fortunate to have learned about! Ear Community was created in response to the lack of knowledge and support for families in need of information regarding these conditions and how to get their loved ones the help they need. With these congenital anomalies being so rare, knowledgeable doctors are few and far between and we are often the ones to inform our pediatricians of what Microtia and Atresia is and how we need to proceed with treatment. The funds donated to the Ear Community help fund research on Microtia and Atresia, provides hearing solutions for those who cannot afford it or were denied through insurance, and provides scholarships to those with Microtia Atresia to continue their education through college.

Thank you to Katie, David & Poppy Cutchin & Family for hosting a fundraiser in May at their nursery for our Ear Community Organization! It was a beautiful day for Customer Appreciation Day and the fundraiser for Ear Community! From organizing raffles and a silent auction to organizing food and lots of fun activities at the nursery that included tree art demonstrations and presentations and lots of helpful tips on caring for plants and trees and gardening! THANK YOU to the artists that gave the demonstrations. They donated their time, travel expense and the trees used in their demonstrations. The artists trees alone brought in a total of $510.00 with a total donation amount of $2,678.00, including donations, going to the Ear Community that was raised! A very special thank you to the Cutchin Family (David, Katie, Poppy and Family) and everyone at the D&L Nursery including Sarah, Charlene, Mary Lou, Patty, John Clayton, Norine Catich, Jeff Ketts, MaryJo Magargee, Eddy Fernandez, Jim and Ray Blakely, Darry and Barbara, Connie and Nanci, Chris Cosenza and Ken Sandifer! It takes a lot of planning and everyone’s help to make these special days possible! Thank you especially for helping give back to the Ear Community! D&L Nursery also lined up this special day honoring World Bonsai Day, which takes place every May 10th! And, congratulations to David and Katie on the birth of baby Mack just last month! Poppy is so excited to have a baby brother!

Here are some fun memories from this special day organized by Poppy and her family and friends!
Thank you, Katie, David and Poppy and Everyone!
Melissa Tumblin
Ear Community

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!

Our panel presentation, “Enhancing Craniofacial Research: Integrating Family Stakeholders,” will take place on Friday, May 9th at 7AM and will include Amy Schefer, Melissa Tumblin, Amy Mendillo, Lucy Pearse, Kris Pearse, Dr. Nicola Stock, Dr. Canice Crerand, Dr. Alexis Johns.

Authors: Stock NM, Herring B, Magee L, Johns AL, Crerand CE, Heike CL, Schefer A, Drake AF, Tumblin M, Feragen KB.

The CARE Study Team has conducted research that was needed in the microtia and atresia and craniofacial field. Thanks to our collaborative research efforts, our CARE Team is making things easier for the next family that has a child born with microtia and atresia and craniofacial microsomia! 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.

Our CARE Study Team is proud to be making multiple presentations during the ACPA including having multiple papers accepted from our team’s research at this year’s meeting! Below is just one of the papers from our team’s contributions.

“Surgical Decision-Making Regarding Hearing and Ear Reconstruction in Craniofacial Microsomia: Exploring Caregiver Narratives,” – Manuscript Number: JCMS-D-24-00363R1, Journal of Cranio-Maxillofacial Surgery. Published in January 2025. Authors:  Stock NM, Herring B, Magee L, Johns AL, Crerand CE, Heike CL, Schefer A, Drake AF, Tumblin M, Feragen KB.

For more information on our CARE research team and advisory board, visit: CARE Team

I am looking forward to seeing lots of our medical professional friends and fellow advocates at this year’s meeting!

Thank you!
Melissa Tumblin
Founder – Executive Director
Ear Community