National Microtia Awareness Day is November 9th! Think of the number 9 as the shape of an ear.

NMAD was established by the Ear Community Organization five years ago to help promote education and awareness about Microtia (missing and underdeveloped ears) & Aural Atresia (missing ear canals, resulting in hearing loss). Some of our children also have craniofacial microsomia (asymmetry of the jaw on one side causing a crooked smile). Our day is dedicated to educating the public about Microtia & Atresia in hopes that the next time someone sees a child or adult with missing ears that they just say “hi” instead of staring or asking questions.

Every November 9th honors children and adults who were born with Microtia & Atresia. After all, our children are perfect and beautiful in every way. Thank you for being kind!

To learn more about Microtia & Aural Atresia, please visit the Ear Community Organization at: www.EarCommunity.org

To learn more about National Microtia Awareness Day, please click here.

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National Microtia Awareness Day is on November 9th!

National Microtia Awareness Day started in 2016 and was established by our Ear Community Organization! The purpose of National Microtia Awareness Day is to help promote public awareness of Microtia & Atresia. Our hope is that families who have new babies born with Microtia & Atresia will leave the hospital armed with more answers than questions, and their dreams for their children intact. If more people learn about Microtia & Atresia, they will be kinder and more accepting. It is also our goal for children and adults with Microtia to realize that they are not alone and that little and missing ears can never hold you back. Through this national day, families can find out about organizations and resources for information and support.

The Microtia & Atresia community has always wanted to come together and know that no one is alone with Microtia and Aural Atresia. The Ear Community Organization has created a home for Microtia and Atresia individuals and their families through our online support groups and our national awareness day. Over the years, National Microtia Awareness Day has been embraced and recognized by families and medical professionals all over the world! Click here to learn more about National Microtia Awareness Day.

Thank you to everyone for embracing our special day on November 9th and for embracing our Microtia & Atresia Community through the Ear Community Organization!

Ear Community

www.EarCommunity.org

September 09, 2020

Warren, Capito Introduce Ally’s Act

Legislation would require insurance providers to cover critical and life-altering hearing aid devices

Bill Text (PDF) | One-Pager (PDF)

Washington, D.C. – United States Senators Elizabeth Warren (D-Mass.) and Shelley Moore Capito (R-W.Va.) introduced Ally’s Act, bipartisan legislation that would ensure private insurance companies provide coverage for osseointegrated hearing device (OIDs), including bone anchored hearing aids (BAHA) and cochlear implants. OIDs are a type of hearing aid that benefit a wider range of people with hearing loss and are often the only hearing device that can restore hearing for individuals born with hearing loss.

“Far too many Americans are left behind due to hearing loss and cannot access the devices they need because their insurance will not cover it, leaving many adults and children in the U.S. without a solution to restore their hearing,” Senator Warren said. “Our bipartisan bill is a simple fix that increases access to these specialized hearing devices and gives Americans across the country a chance to be a part of every conversation.”

“Many of us take for granted the gift of hearing and how often we rely on our senses to effectively communicate with one another. It is important that we take the necessary steps to improve our health insurance systems and ensure these critical devices are readily available for those who need them. OIDs are even more crucial for individuals born with hearing deficiencies, as the first five years of life are important for speech and language development. I’m proud to introduce Ally’s Act, which will help establish better access to these critical hearing devices for those that need them,” said Senator Capito.

The legislation is named after ten-year old Colorado-native, Ally Tumblin, who was born without a right ear or hearing canal and therefore requires the use of a bone-anchored hearing aid. Following a denial for her hearing device, Ally and her mother formed the organization, “Ear Community” to help advocate for insurance coverage of these hearing devices to ensure no person is left unable to hear because of private insurance companies’ refusal to cover OIDs.

A companion bill was introduced in the U.S. House of Representatives by Congressmen Joe Neguse (D-Colo.), David B. McKinley, P.E. (R-W.Va.), and Mike Thompson (D-Calif.).

Senator Warren believes that all Americans should have access to health care, including hearing technology.

• In July 2019, Senators Warren and Rand Paul (R-Ky.) announced the reintroduction of the Medicare Audiologist Access and Services Act, which was originally introduced in 2018 and would ensure seniors and people with disabilities on Medicare have access to a full range of hearing and balance health care services provided by licensed audiologists. In May 2020, Senator Warren and Rep. Tom Rice (R-S.C.) led a letter, along with Congressman Matt Cartwright (D-Pa.), Senator Paul, Senator Kyrsten Sinema (D-Ariz.), Congressman Darren Soto (D-Fla.), Congressman Gus Bilirakis (R-Fla.), and Congressman Rodney Davis (R-Ill.), to House and Senate leadership urging them to include provisions of the Medicare Audiologist Access and Services Act in upcoming COVID-19 packages.
• In December 2016, Senators Warren and Chuck Grassley (R-Iowa), introduced the Over-the-Counter Hearing Aid Act, which they later reintroduced with Senators Maggie Hassan (D-N.H.) and Johnny Isakson (R-Ga.) in March 2017. The bipartisan bill passed in August 2017 and requires the Food and Drug Administration (FDA) to permit the sale of traditional hearing aids over the counter.
• She has also partnered with Senator Grassley to encourage the FDA to improve consumer access to hearing aids, and she and Senator Paul have called on Centers for Medicare and Medicaid Services Administrator Seema Verma to remove roadblocks that prevent Medicare beneficiaries with hearing loss from accessing audiology services.
  Link to Press Release.
  Additional links.

The year 2020 has been a year of changes. It seems like every week there is something new going on in the
world. Ear Community has been working tirelessly to continue supporting the Microtia and Atresia
community throughout the uncertainty of this year. We were so thrilled when we received the application letter for our latest college scholarship awardee!

Please meet Clara Hodel, a 17-year-old who lives in Illinois and already has such a clear path ahead of her!
Clara reached out to us at the beginning of the year, shortly before COVID-19 hit the United States.
Despite the drastic changes that have happened over the course of 2020, Clara has held tight to wanting
to get her higher education. But first, a little about this fierce young woman; Clara was born with Microtia and Atresia of her right ear and knew early on she wanted to pursue a career in Orthotics and Prosthetics. She knew that working in that field would give her the opportunity to help people of all kinds of disabilities and knowing how it feels to be a little different would be vital to her success in that career.

Before she was finished with High School, Clara took intro classes for Orthotics and Prosthetics. She said that having Microtia and Atresia is one of the main reasons she chose this career path. Her first step is to get her undergraduate degree at Illinois Central College. Later she would go to a four-year university to finish her bachelor’s. She plans to get a degree in Kinesiology or something similar which would then enable her to get her Master’s in Orthotics and Prosthetics. She plans to get all of this done in about six years! This girl is on fire!

Clara said that “being born with Microtia and Atresia has taught me how to work in situations that may not be ideal. Partial deafness (….) has given me compassion for anyone with a disability and unique way for personal connection.” Clara is not a candidate for reconstruction surgery and has never been aided, yet she has maintained such a positive outlook in life and a fierce drive to excel. She also shared with us that she “want(s) to leave an impact on people’s lives and be able to give them a better life”. We know that Clara can do anything she puts her mind to. She has not let being hard of hearing slow her down, and she certainly hasn’t let the insanity of this year stop her plans from changing the world. Ear Community is honored to be a part of her journey and cannot wait to see the wonderful impact she has on this world.

Ear Community could not do the good work of supporting higher education for college students if it were not for our fantastic sponsors, and donors from the community. Ear Community is your community, it is Clara’s community, and coming together to support others is such a beautiful thing. Good luck with school, Clara, we know you are doing to rock it!

Many of you may not know about the history of Cochlear Americas! The inspiration for Cochlear’s mission came many years ago when a young Professor Graeme Clark saw his father struggle with hearing loss and proclaimed he wanted to “fix ears.” Professor Graeme Clark later went on to invent the first multi-channel cochlear implant! His inspiring story has shaped who Cochlear is and what the organization stands for: it is the foundation of Cochlear’s mission. More than four decades after his success, Cochlear Americas is proud to celebrate how it connects hundreds of thousands of people across the world!

Cynthia S.’ son James was born with microtia and atresia. After a few solutions that did not work, Cynthia was at her wits’ end. Luckily, Cynthia was able to find pure joy of finally helping her child hear with the Cochlear™ Baha® Implant and Baha 5 Sound Processor.

James was born with microtia and atresia. This typically happens when the pinna (the external part of your ear) is not fully developed and/or the external auditory ear canal is quite narrow, small or closed off. James was therefore unable to hear out of his right ear. At the time of his birth, Cynthia was reassured by the doctor that his left ear was okay and normal, but like any parent, she was concerned about James and his future. At the age of 3, James underwent speech and language therapy with a speech pathologist from home who educated the family about how important it is to hear efficiently. At that time, there were no options available that could effectively support James’ hearing journey, so the family continued to support and develop his speech and language as best they could. Technology then progressed, and at the age of 5, James underwent his first of several surgeries and gained a brand-new ear! The surgeons had taken a rib graft to build James a new ear. Cynthia recalled thinking, “Wow, my boy has 2 big ears!” She explained that it took multiple surgeries to get it to what it looks like now.

Finding support with the Ear Community

Shortly after that set of surgeries, Cynthia found support within the Ear Community. “It was a really validating experience,” Cynthia explained, as she finally understood that James wasn’t the only one with hearing issues. In fact, she learned that there were many individuals that were like him! As Cynthia and James began connecting with the community and its members, the organization was able to educate her about microtia and atresia.

A year and a half later, James had his canaloplasty surgery. The surgery went well, but his external auditory canal and middle ear were extremely small, so James only gained the ability to hear things like jet planes (140 dB). Unfortunately, his hearing gain was only temporary as his ear canal closed up again. James and his family opted not to try the procedure again.

Finding Cochlear

Another year went by and Sick Kids in Canada came into the family’s life. Sick Kids helped educate the family on Cochlear’s products and how they could help James. Shortly after, James became a candidate to receive the Baha System, which consisted of the Baha Implant with the Baha 5 Sound Processor. Cochlear was a perfect fit for James!

You can imagine Cynthia’s emotions during this time as she had scarcely even heard of bone conduction implants before Sick Kids introduced her to the Cochlear technology.

Cynthia chose for him to have the Cochlear Baha Attract System. James was the first child at SickKids to have the Baha Attract system.

James’ activation appointment

Two months later, on James’s birthday, his Baha 5 Sound Processor was activated! Simple words would have a difficult time explaining how happy Cynthia and James were to receive the gift of hearing.

As the years went on, James and Cynthia have remained very involved with the Ear Community, Cochlear, Sick Kids and the hearing community. They have even hosted five Ear Community Picnics, with past picnics seeing members of parliament and school board officials attending.

On November 9, 2019 on National Microtia Awareness Day, the City of Hamilton, ON lit up the city sign in front of City Hall at 7 p.m. in honor of all the little ears in the world. James and Cynthia are so excited that James can finally hear.

Was your child born with microtia and atresia? Learn more about solutions to help them hear.
Link to article.

1. In the United States and Canada, the Baha Implant System is contraindicated in children below the age of 5.

• Hearing loss in children

Cara Lippitt

Cara Lippitt is the Public Relations and Marketing Manager at Cochlear Americas. She is responsible for consumer marketing social media and blog content. Cara is inspired by the stories of the recipients that she is able to tell and the incredible journeys they have taken. Cara was born and raised in Colorado and adores the mountains, snow and the world of musical theatre.