Microtia and Atresia Awareness Day – embracing a decade of global awareness

November 9th, 2025
Thank you to everyone who embraced National Microtia and Atresia Awareness Day on November 9th all over the world this year! This year was a little extra special because it marks a decade of promoting awareness and education since establishing our awareness day! This year was also special because Ear Community turned 15 years old and my daughter, Ally, turned sweet 16! 💙 👂 Ally was around 6 months old when I decided to make a very scary decision to put her out there in order to help others and make a difference when I started the Microtia and Atresia Support Group on Meta/FB. Since then, we’ve never looked back!

This year, we had another wonderful event in California for our microtia community! Our community member, Elizabeth Desloge, has headed this event up for the past 10 years for our community along with her incredible team that has helped her put this special day on each NMAAD: Allison Ashley-Mennis, Christine Bayan, & Rachel Fitzgerald! ❤️Our special day was also made possible by Cochlear Americas, Oticon Medical and our Ear Community Organization, including a shout out to the Los Alamitos Fire Department and Police Department

for making the day fun and educational when it comes to heroes and safety! Thank you so much to Elizabeth, Christine, Rachel and Allison and the kids and family members involved for always wanting to bring our California community together in Orange County on our special community day!

We always enjoy hearing about children spreading awareness and education in the school classroom doing presentations about their missing ears, new ears, hearing loss and about the ear and we had lots of shout outs from many medical professionals, community organizations and our sponsors from all over the globe! We even received a post honoring or our awareness day and support of Ally’s Act from Congresswoman Chrissy Houlahan’s office! A special thank you to Errin Cecil-Smith from Congresswoman Houlahan’s office for taking the time to learn more about our awareness day, our community and about Ally and Ally’s Act with me over the phone. Errin immediately wanted to share about our rare cause and Ally’s Act and Ally and offered to make a beautiful post on behalf of Congresswoman Houlahan and her office. We LOVE the graphics! Our organization also hosted a memorable Zoom dedicated to Moms on our 10th awareness day, which was very emotional and heartwarming for all of us to come together and compare notes on our journeys! These three incredible mom advocates, Lindsey McDevitt, Megan Mitchell and Laura Sinnott, who have children different ages spanning from 1 year of age to 47 years of age, proudly shared what their experiences have been like to learning how to navigate the journey with microtia and atresia and how to be there for other moms and families – priceless!

It was a wonderful week long celebration for everyone embracing our rare cause on our special community day that continues being celebrated all month long! My favorite photos and tags we receive are of the children presenting in their classrooms, excited to share and educate about microtia and atresia and also about getting new ears and all about hearing loss! I love how so many are finding self acceptance and love during our special day. They are all so inspiring and brave!

 

I would like to share two stories of our community members that make Microtia and Atresia Awareness Day the meaningful day it is. This year, our first story is of Bevie educating her class on microtia and her bone anchored hearing device for her aural atresia. Bevie has not only advocated on Capitol Hill for Ally’s Act alongside her mom, Jennifer, but Bevie’s birthday happens to be on November 9th! Bevie celebrated her birthday at school and educated her class on her sweet little ear and her bone anchored hearing device! Jennifer said Bevie was SO EXCITED and she even wore her glasses that fit over her head that she received at our picnic we had in Virginia this summer through our organization’s Pax’s Ear Fund. She calls her birthday “little ear day”! It’s stories like this and children like Bevie, that are behind our special community awareness day each year. Jennifer said Bevie was absolutely beaming and her class was so excited to learn more about microtia and atresia and her bone anchored hearing device! Age 5 – wow! ❤️

 

Here is our second beautiful story for this year. I would like to share about my new friend, Janine Rivera, and about her finding our community and happiness within! 👂💙 Janine found our Ear Community Organization in April of this year. She is 61 years old and was born with microtia and atresia of her left ear. Janine originally wrote in inquiring about getting a prosthetic ear, but had no idea the pleasant surprise she stumbled upon when discovering our Ear Community Organization! ❤️ Janine explained that she had multiple reconstructive ear surgeries between the ages of 5 to 12 years to have an outer ear reconstructed, but due to an insect bite on her ear, an infection caused her ear to have to be removed. When Janine found out that our Ear Community Organization was hosting a picnic in Atlanta, Georgia, she couldn’t believe it because she had never met anyone else with microtia and atresia before! When Janine attended our Atlanta picnic, she not only was overcome by emotion, but she found herself in a community that felt like family! Janine spent the day carrying babies around who also had microtia and atresia! She learned about her options, including about hearing devices and prosthetic ears! To Janine’s surprise, she thought her left ear didn’t work until she tried on the ADHEAR by MED-EL and realized she could hear!

 

Close to our awareness day this year, Janine texted me a beautiful message that said “Look what I got yesterday!” Janine had a prosthetic ear and she was absolutely glowing in her picture!!!! After having a consultation with anaplastologist, Dr. Amanda Behr, of Augusta University, she decided to get a prosthetic ear! Janine said she left Dr. Behr’s office with her hair up in a ponytail for the first time! She decided to leave her hair up when she and her husband went out to dinner and said “Never in my life had I had my hair all pulled back!” 💙 Janine discovered herself all over again at our Ear Community picnic that day in Atlanta! She found others just like her! She learned about her options and she found happiness! In addition, Janine loves her new ear and has even added ear cuffs to help her shine even more!

We are grateful to all of the organizations, medical professionals, teachers and parents who embrace our special awareness day for our microtia and atresia community! Hearing device organizations like Oticon Medical have always embraced our special day where the office makes it a special day for everyone through education about microtia and atresia and also a day to be grateful for the company’s technology that helps so many in our community hear better through a bone anchored hearing device. The staff at Oticon Medical always embraces our day with everything blue including cupcakes to make NMAAD extra special! A special thank you to Brendalys Trinidad for always organizing and making sure this is one of the best awareness day embraced and celebrated by everyone at Oticon Medical, including both the Denmark and US offices. Its the moments like this and the memories created that make Microtia and Atresia Awareness Day something more than I could have ever imagined for our community! Our awareness day is a day of sharing journeys, finding confidence and self acceptance, but it is also a day of love and support and celebrating birthdays and education about our beautiful community members! Just like our Ear Community Organization, Microtia and Atresia Awareness Day has changed lives and saved lives! We also enjoy the posts sent in of animals with missing ears and how their families specifically had to have them because of missing their ear! We think these animals are extra cute! We are a community that is on this same journey together, no matter how different or similar it is for each of our families, but we are in this together – we are community! Thank you to all who made our day special this year and every year on November 9th! 💙

Here are some wonderful memories from our decade of promoting awareness and education about Microtia and Atresia on our special awareness day!
Melissa Tumblin
Ear Community

Hearing Matters Podcast Episode Featuring Melissa Tumblin of Ear Community

Melissa and Ally Tumblin with Congressman Neguse championing Ally's Act, a bipartisan Federal piece of legislation that would cover BAHS and CI hearing device systems.The Hearing Matters Podcast with Blaise Delfino aired today, December 3rd, 2025, sharing my story about advocacy for Ally and the Ear Community Organization as well as our push for Ally’s Act, H.R. 4606 to pass!

NEW Hearing Matters Podcast episode featuring Melissa Tumblin, Founder of EarCommunity.org. The link to the full conversation will in the comment section.

A birth surprise. A scramble for answers. And a mother who refused to accept “good enough” when her daughter’s hearing, and future, were on the line.

We sit down with EarCommunity.org founder Melissa Tumblin to unpack microtia, aural atresia, and the real costs of unilateral hearing loss that too often go unseen: delayed speech, safety risks, and the daily strain of listening with one ear in a noisy world.

When a child is born with microtia and aural atresia, parents often face shock, sparse answers, and a maze of decisions during the most vulnerable days of early life. That was Melissa’s reality when her daughter Ally arrived without a fully formed outer ear and with associated conductive hearing loss.

What began as a search for clarity soon became the foundation for EarCommunity.org, a hub that connects families with hearing care professionals and offers practical guidance on hearing devices, speech development, and school accommodations. This story reveals how a single family’s question—why is medically necessary hearing technology so hard to access—can grow into an organized push for equity in hearing health care.”

Thank you so much to Blaise for inviting me on the Hearing Matters Podcast! Ally and I appreciate you sharing our story of advocacy for the microtia and aural atresia community and why the Ear Community Organization was needed for families like ours! We hope Ally’s Act, H.R. 4606 passes someday soon so the children and adults who require the use of bone anchored hearing devices and cochlear implants can have better access to hearing! After all, these are the only hearing devices they can benefit from as a traditional hearing aid can’t help us.

Here is the link to the episode.
Apple podcast link to the episode.
Spotify podcast link to the episode.

Thank you again! ❤️👂
Melissa and Ally Tumblin
Ear Community

Today is Giving Tuesday – Please support us at the Ear Community Organization

Today is Giving Tuesday!

Ear Community has changed lives and saved lives! Our organization created a community of love and support along with a sense of belongingness and acceptance, one of education and advocacy, and a place for all children and adults with microtia and atresia and their families!

This year alone, Ear Community’s programs allowed us to:
– Continue our work on community research with published papers as well as presenting.
– Host 8 events
– Award (4) college scholarships!
– Donate (9) bone conduction hearing devices – helping (6) children and (2) adults receive the gift of hearing through Pax’s Ear Fund!
– Donate 100 sunglasses and eyeglasses at our picnics through our Pax’s Eyewear Fund!
– Continue championing Ally’s Act – Federal legislation that would close the loop hole for insurance companies to deny coverage of Bone Anchored Hearing Systems and Cochlear Implants!
– And host another successful Microtia & Atresia Awareness Day, helping shine a light on our rare cause by bringing our community together, through education and shared journeys!

Thanks to your generosity, donations help keep our essential programs going! These programs, along with the tireless efforts of our staff & volunteers, help the members in our community to thrive, empowering our beautiful children & adults to achieve their full potential.

Every contribution makes a difference. We hope you visit our website to make a donation and support us today!

There are many ways to support our organization through the end of this year.

1. By donating directly to Ear Community on Giving Tuesday, December 2nd or any time at:
2. By donating to this Meta fundraiser through Ear Community’s page at:
3. By donating on Tuesday, December 9th for Colorado Gives Day:

4. By donating through giving campaigns at work or matched donations (Cybergrants, Pay Pal, Benevity, American Online Giving).

Thank you for this incredible continued support to our organization!
We wish everyone the happiest of holidays and a happy New Year! And, remember – we hope you never feel alone with Microtia and Atresia because you have all of us!

Young Inventors Wanted: MED-EL’s IDEASforEARS 2026 Contest Opens the Door to the Future of Hearing

MED-EL USA announces the launch of the 2026 IDEASforEARS children’s invention contest

November 9, 2025 – (Innsbruck, Austria): Every great idea starts with curiosity – and sometimes, even the youngest minds can imagine new ways to make life easier for people with hearing loss. MED-EL, a world leader in hearing implant innovation, is calling on young visionaries aged 6 to 12 to take center stage in the 2026 IDEASforEARS contest. This global challenge enables children to dream up creative solutions that could change the lives of people with hearing loss – proving that age is no barrier to making a difference.

Launched on World Inventors Day, IDEASforEARS is more than a competition – it is a platform for curiosity, empathy, and bold thinking. Children everywhere are invited to submit their ideas in any form they choose, from sketches and models to videos and stories. The only limit is their imagination. By participating, kids not only learn about the impact of hearing loss but also discover the power of their own creativity to spark real-world change.

A Movement That Crosses Borders

Behind every idea lies a story – a child’s desire to help others hear the world around them. Since its debut in 2017, IDEASforEARS has united over 1,700 children from more than 45 countries, each bringing their unique perspective to the challenge. The contest has become a global platform for raising awareness about hearing health and inspiring the next generation of problem-solvers.

Voices of Inspiration

IDEASforEARS finds its roots in the vision of Geoffrey Ball – inventor, innovator, and Head Judge of the contest. Geoffrey lost his hearing as a toddler and went on to invent the VIBRANT SOUNDBRIDGE middle ear implant, restoring his own hearing and revolutionizing the field. With over 100 patents to his name, Geoffrey knows firsthand what it means to turn a challenge into a breakthrough. “IDEASforEARS is where imagination meets impact,” says Geoffrey Ball, Chief Technical Officer at the MED-EL business unit Vibrant. “I have spent my life turning wild ideas into real technology – and I know that some of the best ideas come from kids who see the world differently. This contest is about giving them the stage, letting them speak up, and showing them that their creativity can change lives. So, if you have got a spark of an idea – no matter how crazy it sounds – chase it. That is how innovation starts.”
Jennifer Robinson, Corporate Director of Product Management Hearing Solutions at MED-EL, adds: “IDEASforEARS gives children a voice in shaping the future of hearing technology. Every year, we are amazed by their creativity and empathy. Their fresh perspectives help us reimagine what is possible, and we are proud to champion their ideas.”

Technology Meets Creativity

For the third year in a row, MED-EL is proud to collaborate with Microsoft as the official Technology Partner of IDEASforEARS. This partnership brings cutting-edge tools to the contest, helping young inventors communicate, create, and connect across languages and borders. With live translation, interactive content, and accessibility features powered by Microsoft technology, the contest experience becomes even more inclusive and inspiring for children with hearing loss.

Making the Invisible Visible

Hearing loss is an invisible barrier – affecting millions of people without being immediately seen or understood. IDEASforEARS helps shine a light on this hidden challenge by encouraging children to explore and empathize with the experiences of those with hearing loss. Across the globe, schools are integrating the contest into their classrooms, using it as a creative way to raise awareness and start conversations about hearing health. Through their ideas, children help make hearing loss visible – and inspire action.

A Life-Changing Opportunity

MED-EL encourages parents, teachers, and mentors to support children in joining this extraordinary adventure. Winners will not only see their ideas celebrated but will also earn a once-in-a-lifetime trip to Innsbruck, Austria – the home of MED-EL’s pioneering research and development. All details and entry guidelines are available on the IDEASforEARS website. The deadline for submissions is January 17, 2026 (midnight CET).

For a glimpse into the creativity and impact of past contests, visit the IDEASforEARS Facebook page for stories, updates, and inspiration.

Notes to Editors

About Hearing Loss

Over 5% of the world’s population – or 466 million people – has disabling hearing loss (432 million adults and 34 million children). It is estimated that by 2050 over 900 million people – or one in every ten people – will have disabling hearing loss. The World Health Organization recommends a range of interventions to improve communication once hearing loss has occurred, including hearing implants.

About MED-EL

MED-EL Medical Electronics, a leader in implantable hearing solutions, is driven by a mission to overcome hearing loss as a barrier to communication and quality of life. The Austrian-based, privately owned business was co-founded by industry pioneers Ingeborg and Erwin Hochmair, whose ground-breaking research led to the development of the world’s first micro-electronic multi-channel cochlear implant (CI), which was successfully implanted in 1977 and was the basis for what is known as the modern CI today. This laid the foundation for the successful growth of the company in 1990, when they hired their first employees. To date, MED-EL has more than 3,000 employees from around 90 nations and 30 locations worldwide.
The company offers the widest range of implantable and non-implantable solutions to treat all types of hearing loss, enabling people in 139 countries enjoy the gift of hearing with the help of a MED-EL device. MED-EL’s hearing solutions include cochlear and middle ear implant systems, a combined electric acoustic stimulation hearing implant system, auditory brainstem implants as well as surgical and non-surgical bone conduction devices. www.medel.com

CEO
Doz. DI Dr DDr med. h.c. Ingeborg Hochmair

Press Contact

PR & Corporate Communications
MED-EL Medical Electronics
Fürstenweg 77a
6020 Innsbruck
Austria
T: +43 5 7788
E: press@medel.com

 

Microtia and Atresia Awareness Day is coming up on November 9th!

National microtia and atresia awareness day
November 9th is National Microtia and Atresia Awareness Day
, dedicated to spreading hope & knowledge concerning a rare congenital anomaly known as Microtia & Aural Atresia – when the ears do not fully develop during the 1st trimester of pregnancy. Microtia derives its name from the Latin terms for little ears or missing ears. Aural Atresia results when the ear canals are underdeveloped or absent, causing hearing loss. 1 out of every 6,000 children is born with Microtia & Aural Atresia in the United States (approximately 600 babies are born each year in the US).

It is the intention of Microtia and Atresia Awareness Day to help promote public awareness & the hope that future generations of families will leave the hospital equipped with more answers than questions & their dreams for the child intact. It is also the hope that if more people learn about Microtia & Atresia, that they will be kinder & more accepting. Through this national day of awareness, individuals with Microtia & Atresia & their families can find out about organizations & resources for information & support.

Microtia and Atresia can affect one or both ears.
Microtia can occur with or without Atresia and visa versa.
Microtia affects the right ear 2x more than the left ear.
Microtia affects boys 2x as often as girls.
Bilateral microtia and atresia occurs around 7-22% of the time.

Many individuals affected by Microtia and Atresia can also have Craniofacial Microsomia – when the jaw line is asymmetrical on one side causing oral complications, including causing the skull, eye and mouth on one side to be smaller or underdeveloped when compared to the non affected side. Craniofacial Microsomia is also known as Hemifacial Microsomia.

African Americans are the least affected by Microtia and Atresia, while Ecuadorians, Hispanic/Latino, Asian and Native American ethnicities are affected more often.

There are (4) grades of Microtia and Aural Atresia:
While there is little understanding of what causes Microtia and Atresia, there are new genetic findings that show damaging genetic variants may cause Microtia and Atresia and Craniofacial Microsomia. The Ear Community Organization didn’t want another mother to ever blame herself, thinking she did something to cause her child’s ears to be missing during her pregnancy. These new findings can be found on Ear Community’s website, here, including additional research information.

Children and adults who have Microtia and Aural Atresia are beautiful and perfect in every way and should never let their hearing loss or underdeveloped ear(s) define them. However, if an individual with Microtia and Atresia believes that outer ear reconstruction or hearing restoration surgery would give them the happiness they long for, it is important to be informed of the following options:
1. The Do Nothing Option.

2. Reconstructive surgery:
a. Rib Graft surgery – an ear framework that is stitched from sections of rib (gold standard surgical technique).
b. Porous polyethylene surgery – known as a preshaped ear framework referred to as Medpor, SuPor or OMNIPORE.
c. Craniofacial surgery that can help make the jaw and face symmetrical. Jaw distraction is also an option. Polyethylene implants for the chin and cheeks are an option as well as botox. A craniofacial team/plastic surgeon can review these options with you.

3. Prosthetic ear (which looks incredibly realistic).

4. Atresiaplasty/Canalplasty – when a hole is drilled into the skull, creating an area for an ear canal that is lined with a skin graft as well as creating the possibility of the middle ear bones being tweaked offering an improved hearing range.

Bone anchored hearing device options5. Bone Anchored Hearing Devices/Bone Conduction Implant Systems – these are specific bone conduction systems that aid conductive hearing loss and are often the only specialized hearing devices individuals with Microtia and Aural Atresia can benefit from due to missing ears.


Bone Anchored Hearing Device options:

The Cochlear Baha and Osia System
The Oticon Medical Ponto and Sentio System
The MED-EL ADHEAR and BONEBRIDGE System

The Ear Community Organization is the first parent driven nonprofit organization to help Microtia and Atresia families, specifically, as well as having paved the way for this community since 2010.

How has Ear Community given back to the Microtia and Atresia community?
– offered the first comprehensive online resource for information on Microtia and Atresia in one place in multiple languages.
– hosted over 130 FREE events throughout the United States as well as in Denmark, South Africa, Spain, the UK, Australia and multiples in Canada bringing together thousands of families and medical professionals.
– donated nearly 200 bone anchored hearing devices to those in need or who have been denied by their insurers.
– awarded 35 college scholarships.
– established “National Microtia and Atresia Awareness Day”. Our awareness day has a Resolution in place that would designate November 9th on the government calendar.
– championed genetic research on Microtia and Atresia with published results.
– has Federal legislation introduced, known as Ally’s Act, that would ensure private insurance coverage for Bone Anchored Hearing Devices and Cochlear Implants for children and adults from birth to age 64.
– 3D Printed/Regenerated ears – collaborating with clinical trials.

On National Microtia and Atresia Awareness Day, many medical professionals host clinics and educate online about Microtia and Atresia through social media. Teachers of the Deaf and Hard of Hearing as well as families educate and advocate in the school classroom, sharing about hearing loss and Microtia as well as discussing differences, acceptance and being kind. Many choose to read from related books on Microtia and hearing loss while others bring in treats such as cupcakes and cookies in the shape of ears or with the blue Microtia and Atresia awareness ribbon on them. Many classrooms get creative with coloring pages of Microtia ribbons that are printed for anyone to color in!

Medical professionals to consider reaching out for information regarding help with Microtia and Aural Atresia:
Neonatologist, pediatrician, ENT, audiologist, craniofacial team (plastic surgeon and oral surgeon), pediatric dentist, opthalmologist, speech pathologist, occupational therapist, physical therapist, anaplastologist, geneticist, psychologist/counselor or developmental specialist.
* some children have additional syndromes associated with Microtia and Atresia who can benefit from additional specialists listed above.

Did you know that animals can also be born with Microtia and Atresia?

 

Tags:  #nationalmicrotiaandatresiaawarenessday
#microtiaawarenessday  #atresiaawarenessday
#microtiakidsrock  #EarCommunity  #luckyears #microtia #atresia
www.EarCommunity.org

The Ear Community Organization honors Sean Callinicos for his advocacy of Ally’s Act

Sean Callinicos receives advocacy award from the Ear Community Organization

Sean Callinicos receives advocacy award from the Ear Community Organization

Today, I would like to honor a very dear friend of mine and thank him for all of his help, incredible work and advocacy!

Finding the right help can sometimes be difficult, but when you do find that someone who truly understands what it is that you are fighting for and sees what is needed and wants to support you – AMAZING! Sean Callinicos – THANK YOU! Thank you for wanting to help children (like my Ally) and adults thrive in their communities when it comes to hearing loss! Thank you for helping all of us fight the good fight when advocating for Ally’s Act! I see your incredible passion for wanting to help Ally’s Act pass and every time I think of how much you have helped our organization and our community, it brings tears to my eyes! For the past two sessions, you have been by my side in DC advocating and you are also my voice when I am not there in meetings, on phone calls and through emails – THANK YOU!
They say its a small world. This is so true! During my first phone call with Sean about Ally’s Act, I discovered that he had worked for the same company (StorageTek) that both my husband and his father worked for years ago. We knew people in common and all about the technology. A conversation that resonated with me and that was just the beginning. Crazy how years later, a rare cause and a small nonprofit would connect us on opposite sides of the US. Small world it is, Sean, and I am grateful for you!

On behalf of every child and adult that has hearing loss, The Ear Community Organization is honored to present you with this award! Thank you for standing up for all of us and advocating for what is needed! There are some awards out there that honor the helpers in rare communities – this is our award recognizing you! 🤟

 

You are an incredible human being, Sean, and I am proud to have you as my friend and lobbyist! Thank you again for helping Ally and me and so many more who will benefit from passage of Ally’s Act someday!
Melissa Tumblin
Founder – Executive Director

Sasha Gardner and Melissa Tumblin talk about Microtia and Atresia

Sasha Gardner and Melissa Tumblin talk about microtia and atresia

Sasha Gardner and Melissa Tumblin talk about microtia and atresia

Recently, I had the opportunity to catch up with UK Model, Sasha Gardner, and talk about microtia and atresia, on her podcast – Sasha Says! Sasha was born with microtia and atresia and she has been working to raise awareness about our rare cause and talk about anti-bullying on her podcast. Both of us have known about each other for the past 15 years and we finally had the chance to catch up and talk about her work in the community and mine, as well as sharing our experiences with the community when it comes to microtia and atresia. It was so wonderful to finally meet Sasha! It was like catching up with a good friend! We hope our talk will help families in our community! ❤️ 👂

I am grateful for connecting with Sasha and to discuss the journey of microtia and atresia from both a mother’s perspective and an individual having being born with microtia and atresia. Sasha shares that “In this episode, Melissa Tumblin — founder of Ear Community and driving force behind Ally’s Act in Congress — shares her journey from the shock of her daughter Ally’s diagnosis with microtia and aural atresia to becoming a global advocate. Melissa opens up about the early days of confusion in the hospital, the lack of clear information from doctors, and the emotional rollercoaster of raising a child with hearing difference. She explains why she created Ear Community, how she built a worldwide support network for families, and the impact of National Microtia and Atresia Awareness Day.

We also dive into Ally’s Act, the federal legislation Melissa has been championing in Congress to ensure consistent insurance coverage for children and adults who need access to life-changing hearing technology.

💛 Whether you’re a parent of a child with microtia, an adult navigating hearing loss, or someone passionate about advocacy and inclusion, Melissa’s story is one of strength, resilience, and change.”
– Sasha Gardner

Watch and share:
🎥 YouTube: https://www.youtube.com/channel/UCjYuNI2MBXh-YTc-2MLfALw
🎧 Spotify: https://open.spotify.com/episode/6cf3RREAL3H5G9loWDyneN?si=dr671hk9StiezEL2yzPOTw

📱 Instagram: https://www.instagram.com/sashasayspodcast?igsh=MXdwdDh4MTJoM3BjaA%3D%3D&utm_source=qr

Thank you again to Sasha for creating a platform to help spread awareness and education about microtia and aural atresia as well as a safe place to have helpful discussions for our community!
Melissa Tumblin
Ear Community

#microtia #microtiaawareness #sashasayspodcast #microtiakids #disabilityawareness #selfacceptance #inspiration #hearingloss #mentalhealthmatters #empowerment #HearingHealth #allysact #EarCommunity

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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