Archives for September 2025

Rep. Neguse Joins Ally and Melissa Tumblin to Introduce “Ally’s Act,” Legislation to Expand Coverage for Specialized Hearing Devices

Melissa and Ally Tumblin talk about Ally’s Act with Congressman Joe Neguse, September 10th, 2025.

 

 

FOR IMMEDIATE RELEASE:
Wednesday, September 10, 2025

Contact: Grace Martinez

Grace.Martinez@mail.house.gov


VIDEO: Rep. Neguse Joins Ally and Melissa Tumblin to Introduce “Ally’s Act,” Legislation to Expand Coverage for Specialized Hearing Devices

Washington, D.C. — Colorado Congressman Joe Neguse has once again teamed up with Rep. Brian Fitzpatrick (R-PA) to introduce “Ally’s Act,” a bipartisan bill that would ensure private insurance companies cover osseointegrated hearing devices (“OIDs”), including bone anchored hearing aids (“BAHA”) and cochlear implants. The legislation is inspired by Ally Tumblin, a 16-year-old Colorado native, who was born without a right ear or hearing canal—conditions known as microtia and aural atresia—and requires the use of a BAHA.

After Ally’s insurance company denied coverage of her hearing device, her mother, Melissa Tumblin, formed the organization Ear Community in 2016 to advocate for insurance coverage of these devices to ensure no person is left unable to hear because of private insurance companies’ refusal to provide coverage. Then, in 2019, during Congressman Neguse’s first term in the U.S. House, he received a letter from Ally detailing her circumstances. After learning about her situation and the similar circumstances of Americans living with microtia and aural atresia, Neguse first introduced Ally’s Act.

“The bill is really simple. It is an effort to help Coloradans and Americans ensure that they have access through their health insurance plans to bone anchored hearing devices, which, right now, are not available on the vast majority of health insurance plans under the Affordable Care Act. We’ve got to change it. And really, this bill only came about because of Melissa and Ally Tumblin. It was their story—and Ally’s story—that really helped us conceive of Ally’s Act, and I couldn’t be more grateful to both of them for their courage and their willingness to be a part of the solution,” said Congressman Neguse in a video highlighting the bill.

Watch the full video HERE.

“Bone anchored hearing systems and cochlear implants are the only hearing devices some children and adults can benefit from. When an insurance provider denies coverage for someone in need of one of these hearing devices, the opportunity for communication and to pursue certain careers is taken away. These hearing devices are medically necessary, and it is imperative that private insurers provide access to these types of hearing devices, including the necessary hearing health care that is associated with them. Ally’s Act would ensure fair and consistent coverage for these hearing devices, improving the lives of hundreds of thousands of people,” said Melissa Tumblin, Ally’s Mother and the Founder and Executive Director of Ear Community.

“When a child is denied the ability to hear because of an insurer blocking access to care, that’s not just a policy failure—it’s a moral one. Ally’s Act is our answer. It’s a commitment to every family: your child’s future won’t be decided by red tape. As Co-Chair of the Bipartisan Disabilities Caucus, I’ve made it a priority to ensure our laws are not only inclusive in intent, but effective in impact—for every child, every family, and every ability,” said Representative Fitzpatrick.

The bill is also widely supported by individuals born with microtia and atresia, as well as by medical organizations representing ear, nose, and throat specialists. See what they’re saying below.

“The American Speech-Language-Hearing Association applauds Representative Neguse for reintroducing Ally’s Act,” said American Speech-Language-Hearing Association President Bernadette Mayfield-Clarke, PhD, CCC-SLP. “Nobody should be denied life-changing hearing technology, including implantable hearing devices, and related audiologic services because of arbitrary private insurance restrictions. Effective communication is not only necessary for academic, social and career success, but it is essential to our ability to connect with others. We believe it as a basic human right that should be accessible and achievable for all. This important legislation stands to make a real difference in the lives of people of all ages with hearing loss.”

“American Cochlear Implant Alliance enthusiastically supports Ally’s Act, legislation intended to ensure that Americans have access to hearing implants including cochlear and osseointegrated implants,” said Donna L. Sorkin, Executive Director, American Cochlear Implant Alliance. “Representative Neguse has demonstrated leadership and understanding of the extraordinary value of appropriate hearing healthcare for people of all ages, allowing those who need them to hear to pursue education, participate in the workplace, and enjoy a high quality of life.”

“When patients need osseointegrated devices or cochlear implants for severe hearing loss, insurance denials create devastating financial barriers on top of an already challenging medical condition,” said Rahul K. Shah, MD, MBA, Executive Vice President and CEO of the American Academy of Otolaryngology–Head and Neck Surgery. “We’re grateful to Representatives Neguse and Fitzpatrick for Ally’s Act, which will ensure coverage for these life-changing devices and allow otolaryngologists and their patients and families to focus on clinical treatment and outcomes—rather than battling coverage denials and financial burdens.”

This bill is endorsed by over 55 advocacy, academic, and non-profit organizations, including Ear Community; the American Academy of Otolaryngology – Head and Neck Surgery, the American Cochlear Implant Alliance; the American Academy of Audiology; the American Speech-Language-Hearing Association; the National Rural Health Association; Waiting to Hear; HearStrong; Lemon Aids 4 Hearing; Songs for Sound, Inc; American Tinnitus Association; the Alexander Graham Bell Association for the Deaf and Hard of Hearing; City and County of Broomfield, Colorado; Hands & Voices; Harvard Medical School – Massachusetts Eye and Ear/Otolaryngology; Let Them Hear Foundation; Morgan’s Magical Ears; Educational Audiology Association; Dallas Ear Institute; the Acoustic Neuroma Association; Hearing Health Foundation; Colorado Academy of Audiology; the California Ear Institute; Aid the Silent; HearAid Foundation; New York Eye and Ear Infirmary of Mount Sinai; Microtia and Atresia at Stanford Hospital and Clinics/Otolaryngology; the American Pediatric Surgical Association; American Society of Pediatric Otolaryngology; Michigan Medicine – Department of Otolaryngology; University of Pittsburgh Medical Center/Otolaryngology; the Otolaryngology Department at Columbia University Irving Medical Center; IndoUSRare; Chad Ruffin, MD; Proliance Surgeons; Prader-Willi Syndrome Association/USA Advocacy Committee; Weill Cornell Medical College – Departments of Otolaryngology and Audiology; Hearing Industries Association; Hearing Loss Association of America; The John Tracy Center; Plastic Surgery Department at Johns Hopkins; Association of Medical Professionals with Hearing Losses; the University of Southern California Caruso Department of Otolaryngology – Head & Neck Surgery; University of California San Francisco Medical School/Department of Otolaryngology and Cochlear Implant Center; Johns Hopkins Biomedical Engineering and Auditory Research Department; Johns Hopkins Cochlear Implant Center, Department of Otolaryngology – Head and Neck Surgery; ReconstratA, the American Doctors of Audiology; FACES: the National Craniofacial Association; MyFace Organization; and the American Cleft Palate Association; Lewin Ear Reconstruction; Reinisch Plastic Surgery; Tahiri Plastic Surgery; Nemours Children’s Ear, Hearing & Communication Center; Jacob’s Ride; International Congress on Bone Conduction Hearing and Related Technologies; The American Association for Dental, Oral, and Craniofacial Research.

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Microtia & Atresia Awareness Day is November 9th – order your shirts through Ear Community


Official t-shirts & more are now available in different styles & colors with proceeds going to support our Ear Community Organization!
 

* Look for order deadline dates below!*
Order by September 30th, 2025 for Ear Community shirts!
Order by October 10th, 2025 for Lucky Ears shirts!

HOW TO ORDER:
The following are the official links to order microtia and atresia awareness day shirts and more from Ear Community!

1. Click here to order the official microtia and atresia awareness day shirts available through Ear Community. T-shirt styles include the 2025 style Microtia & Atresia Awareness Day shirt, reindeer & gnome shirts for the holidays, Microtia Kids Rock, microtia butterfly shirt & Proud Mom or Dad who know an awesome microtia or atresia kid styles. These styles come in all different sizes, colors, long and short sleeve, hoodies, onesies, zip ups, etc… 
Order deadline is September 30th! *** If you are ordering for a large group and would like to have these shirts shipped sooner for group pictures, please email Olivia at:  Tiny@TinyLittleMonster.com

2.  Click here to order the National Microtia Awareness Day November 9th style shirts or click here to order the National Atresia Awareness Day November 9th shirts. This style comes in a variety of colors, sizes long and short sleeve, hoodies, sweatshirts, etc… Order deadline for both is September 30th! 

3. Click here to order stickers, ribbons, socks, mugs and water bottles, backpacks, leggings and so much more! A special thank you to Priscila Soares for creating these designs to help embrace our special community day and support on Ear Community Organization! Order deadline is October 10th!

Thank you and our community looks forward to embracing National Microtia and Atresia Awareness Day every November 9th!
Ear Community

 

 

Alida Proehl raises awareness for rare cause through 5K run/walk for the Ear Community Organization

Ear Community’s first 5k run/walk organized by Alida Proehl in Tremont, IL. (July 19, 2025)

On Saturday, July 19th, 2025, Alida Proehl organized the very first 5K run/walk in Tremont, Illinois for our Ear Community Organization called “Hear Me Run!” This was a very special day for Alida because she wanted to help give back to the community and raise awareness about a rare cause that is near and dear to her heart – microtia (missing ears) and aural atresia (absent ear canals resulting in hearing loss)!

Alida was born with Microtia and Atresia, which involves hearing loss. Alida recently made the decision to have a hearing device implanted that would help her hear better, but her insurance provider denied coverage for a bone conduction hearing implant system, called the Osia System, made by Cochlear Americas. The Osia and other implantable hearing device systems cost nearly $50,000 or more including the surgery for this device. Originally, her insurance provider approved her claim, but then later denied her claim, stating that the Osia was not medically necessary, even though this hearing device was approved by and recommended by her ENT. For Alida, this hearing device is absolutely medically necessary because it would help her hear better since she only has hearing in one ear. When Alida was denied the opportunity to hear by her insurance, she quickly realized how much these hearing device implants mean to someone when they have hearing loss. Alida knew right then that she wanted to raise funds so she could help another child or adult hear if their insurer denied them access to a hearing device or if they could not afford to pay out of pocket for their hearing device.

Once Alida knew she wanted to help give back, she reached out to our Ear Community Organization as a member of our community. She knew exactly what she wanted to do and began planning for and organizing the 5K run/walk in her hometown. From gathering sponsors, to creating her own fliers and t-shirt designs, to speaking on local podcasts to asking the City of Tremont for help – Alida had a plan! Did I mention that Alida is only 20 years old! For months, Alida wondered how many people would show up, worried it would only be a handful of people who would turn out as the race date neared. Finally, on Saturday, July 19th, it was Alida’s big day to bring the community together and she was ready! Alida and help began setting up for the race around 5:30 AM that morning! Alida’s amazing family and friends helped set up the entire course while she focused on some last-minute details. To Alida’s surprise – 161 walkers/runners signed registered for the race! Of course it rained, but for most of the race it was perfect weather!  About 89 people ran the race. The runners had chips on their running bibs, so Alida could see how many actually came to the race. She had volunteers of all ages offer to help, which was so inspiring to see! Alida’s Great Aunt, who is 80 years old, helped pass out water to runners at the one-mile mark! The Tremont Police Department donated their time and services to provide officers to guide runners at intersections! Tremont Rescue had two responders (Megan Harley, Paul Molden & Chief Trent Steiner) volunteer standby for runners during the race, stationed at both the start and finish lines! And, Tremont Area Park District (Bryan Cheek, Director) donated the park pavilion during the race where participants could be sheltered from the rain and where the awards ceremony took place.

One of the highlights of Alida’s day was having two other individuals with microtia and atresia at the race! One of them traveled all the way from Florida to be there! The other Alida had just met a couple of weeks earlier at a restaurant. It meant the world to share this experience with them! Not only was this day so special for Alida and her family and for all of the runners and walkers who participated, including so many from her home town who stepped up to help and donate their time and services, but Alida raised nearly $15,000.00 with her event thanks to registered walkers and runners and other donors, including the runners and walkers who shared about this event asking others to help donate to our cause. Incredible!!!! Alida even had awards made and certificates, including making sure that first place received a special bracelet that was donated thanks to Brad and Kathy of Udry Jewelers! Alida says that she felt truly blessed to have so much support and that this is something she would like to do again! 

A special thank you to Alida – Thank you for wanting to raise awareness about our rare cause – microtia and atresia, and thank you for wanting to help give back to the community through Ear Community! All of your hard work, drive and passion was absolutely incredible from start to finish! You are such an incredible person with such a big heart wanting to make a difference and to help raise funds so no other child or adult has to do without a hearing device. Thank you for everything and for your family who supported you the entire way! Thank you for raising funds for our Ear Community Organization so we can continue to help even more children and adults who were born with microtia and atresia!

A special thank you to to the following who helped make Alida’s work and this event so special and something to be proud of and remember for ever!
Thank you to Alida’s entire family and friends! Especially her mom and dad, Dr. Rebecca Proehl and Dr. Trent Proehl.
The Sponsors who donated to Alida, supporting her and the Ear Community Organization! Funds helped go toward paying for banners, fliers, shirts and other associated fees that helped make this event possible!
Sponsors: 
Peoria Ear Nose & Throat Group, Facial Plastic & Laser Surgery Center, LLC.
Wayne Litwiller Excavating
Tremont First National Bank
Sam Leman Morton Chrysler, Dodge, Jeep, RAM & Fiat
Sam Lemon BMW of Peoria
Beccham’s Market, Inc.
Louisa Jane, Inc.
Kouris Pub
Lighthouse Buick
Debra & Brad Barnard
Kevin & Valinda Ulrich
Jason & Amanda Proehl
Patricia & Rick Vance
Robert & Beverly Herrin
Michael Lynn
Jeff Paternoster with ShaZam Racing through Race Roster for helping make Alida’s 5k easy to manage and a complete and total success all around!

Alida, thank you for hosting and managing this unforgettable 5k run/walk for our Ear Community Organization! Your “Hear Me Run” event will always be special to me and to our organization as our very first run/walk event ever! This is something that I could have never managed to put together and or had the time to organize, but YOU did and you did an exceptional job! You are special to Ear Community, to the microtia and atresia community and to me, Alida! Thank you for working so hard on all of this! You are nothing short of amazing, Alida! You are truly an inspirational person and I just know you are going to do incredible things in life! I, along with Ear Community are grateful for you, Alida! Thank you for giving back to the community and for supporting our cause. This was a wonderful way for you to shine a light on our rare cause by making it such a beautiful day for so many!
Thank you, Alida!

Melissa Tumblin
Founder – Executive Director
EarCommunity.org

The Ear Community Organization has watched our community members, children and adults, continually be denied coverage by their insurance providers for bone anchored hearing devices. It saddens our community when the opportunity to hear is taken away and not supported as something that should be provided when we pay into our insurance premiums. This is why Ear Community has Federal Legislation in place known as Ally’s Act, H.R. 4606, that would close the loophole when insurers deny bone anchored hearing devices and cochlear implants. Ally’s Act would provide fair and consistent coverage for children and adults from birth to age 64, preventing another individual, like Alida, from being denied the opportunity to hear. We are asking everyone in every state to please email, call and write to your Congressman at their Washington DC office, asking them to co-sponsor Ally’s Act, H.R. 4606. Please visit the Ear Community website for template letters and details on how to advocate for this piece of legislation. We want Ally’s Act to pass because no one should ever have to fight to hear!
Link to Ally’s Act page:  https://earcommunity.org/about/allys-act-h-r-5485/

Please print and mail the following 1-pager, list of endorsers and fact sheet when you ask your Congressman to cosponsor Ally’s Act, H.R. 4606:
Ally’s Act 1-pager
Ally’s Act list of endorsers
Ally’s Act fact sheet

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