November 9, 2020 – Congressman Joe Neguse honoring National Microtia Awareness Day! Congressman Neguse helped Ear Community introduce hearing device insurance legislation on December 18, 2019, H.R. 5485 (and S. 4532), also known as Ally’s Act – named after Ear Community founder, Ally Tumblin.

November 9th is National Microtia Awareness Day!
Microtia is a congenital birth anomaly that occurs when one or both ears do not fully develop or are physically missing. Microtia is often accompanied by Aural Atresia – when the ear canals are underdeveloped or absent, resulting in hearing loss. Many children have associated craniofacial challenges, known as craniofacial microsomia, which affect the symmetry of the jawline causing oral challenges and a slight crooked smile. In the United States, Microtia and Aural Atresia affect 1 in every 6,000 births which is approximately 663 babies born each year. There are an estimated 54,000 individuals currently living in the United States with Microtia and Atresia.  The numbers of individuals affected by Microtia and Atresia vary regionally from country to country. While African Americans seem to be the least affected, Native American, Asian, Ecuadorian, Colombian, and Latino-Hispanic ethnicities are often affected more so. While it is not yet understood what causes Microtia and Atresia, it is possible that it is genetic. Microtia and Aural Atresia occurs during the 1st trimester of pregnancy when the ears develop. Ear Community is the first parent driven nonprofit and the first comprehensive source to help the Microtia and Atresia community globally. Our organization has educated and brought together tens of thousands of people across the world & has shined a light on our rare cause/congenital anomaly.

It is Ear Community’s hope that families who have new babies born with Microtia and Atresia will leave the hospital armed with more answers than questions & their dreams for their children intact. If more people learn about Microtia & Atresia, they will be kinder & more accepting. It is also our goal for children & adults with Microtia and Atresia to realize that they are not alone. Facial challenges, hearing loss and the longing for social acceptance are some of the daily concerns for those who are born with Microtia. Children are born into this world not knowing they are any different from anyone else. Many with Microtia share similar stories of curious stares, bullying, or awkwardness. Individual personalities, social conditioning, available treatments and bullying all impact how every child develops and copes as an adult. By removing unnecessary boundaries and replacing them with resources, tools, and support, we can eliminate bullying and clear the way for an even more successful future.

Broomfield, Colorado – The Tumblin Family. Melissa, Brent, Hailey and Ally

The Tumblin family founded the Ear Community Organization after their youngest daughter was born with Microtia and Atresia of her right ear in 2009. The Tumblin family also established National Microtia Awareness Day to embrace Microtia and Atresia families, everywhere. This May, Ear Community turned 10 years old! For the past decade, the Ear Community Organization has brought over 15,000 people together from around the world at the organization’s FREE events making it possible to share experiences and resources, donated over 130 hearing devices and has awarded 15 college scholarships. The community is made up of not only children and adults with Microtia and their families, but teachers, advocates and medical professionals from all over who foster awareness and assistance for this amazing group of people. Board members for Ear Community either have the condition themselves or a family member who does, so they have close personal experience with the obstacles from a myriad of perspectives and can offer guidance and mentoring. The organization also has an advisory board made up of medical professionals who have chosen to focus their skills on helping improve the quality of life for individuals who have Microtia and Atresia.

Each year, National Microtia Awareness Day is recognized worldwide and continues to grow! This year, despite the COVID-19 pandemic, our awareness day was embraced and celebrated by families and medical professionals from all over the world from all continents! In fact, our awareness day is being embraced throughout the world and many families call our day “international Microtia Day” or “little ear day!” Many medical facilities hosted virtual educational seminars for Microtia and Atresia families at audiology clinics, ENT and plastic surgery facilities, even some in person clinics (safely) took place, some hosted grand rounds sessions on rib cartilage carving classes and many doctors and families blogged and posted about educational information about Microtia and Atresia on all social media platforms! At Ally Tumblin’s school, her school principals promoted awareness and education about Microtia and Atresia during morning announcements each day for the week leading up to National Microtia Awareness Day and wore their shirts even during remote online schooling! A teacher of the Deaf and Hard of Hearing in California, Elizabeth Desloge, who always hosts a Microtia Awareness Day event each year, even managed to host a drive thru socially distanced event for families this year which was a huge success! Children made videos, many presented (virtually) to their classrooms and so many families supported our organization by wearing our Ear Community Microtia Awareness Day t-shirts. Microtia Awaerness Day even made it on the local news in some states and in Brazil! This year, we expanded our awareness day accessories to mugs, backpacks, socks, stickers, pillows and more which many enjoyed! Every year on November 9th, NMAD offers a special way to spread some positivity and help promote awareness, education and kindness! Our day is an amazing day and special to so many around the world! This year, Ear Community also hosted our first virtual WORLD Microtia and Atresia event that included music and stories from many within the Microtia and Atresia community. We had families join us from many states across the US in addition to Canada, Australia, South Africa and Ethiopia. The Tumblin Family enjoyed being included with some of the virtual events hosted by other countries on Microtia Awareness Day including South Africa and Malaysia. Many of these families have become friends from over the years of being a part of Ear Community’s community.

Harvard researchers, Dr. Angela Tai and Barbara McDonough, RN working on genetic research for Microtia and Atresia while embracing Microtia Awareness Day!

Some of the advocacy and awareness the Ear Community Organization has set out to promote and champion in addition to helping families and their children find acceptance is working toward finding answers as to why Microtia and Atresia happen. Ear Community has directly championed genetic research in collaboration with Harvard’s Seidman Labs, Vanderbilt, the MIT Broad Institute along with the Gabriella Miller Kids First Foundation. This September, we received the results back from our 2 year genetic study and are very excited to share about these results just as soon as the data found has been analyzed and is published. We look forward to sharing this new information with Microtia and Atresia families all over the world and also as an update to help medical professionals continue promoting the latest education and information about Microtia and Aural Atresia.

A very special thank you to all of Ear Community’s amazing sponsors who helped make our awareness day extra special for everyone through special posts and videos! Thank you also for supporting Ear Community’s efforts so that we can continue to bring our community members together each year at our events! This year was a little different for us due to COVID-19 and not being able to host our events in person as we have for the past 9 years, but we still managed to bring our community together, virtually. In fact, no matter how much this pandemic has affected us – this year was a blessing as our virtual events were able to bring together more families and medical professionals from all over the world!

Thank you to our Platinum Sponsors!
Cochlear Americas (Baha 5 and Osia)
Oticon Medical (Ponto 3 Superpower and Ponto 4)

Thank you to our Silver Sponsors!
MED-EL (ADHEAR and BONEBRIDGE)

Our hearts are full once again this year and remember kindness goes a long way!
Everyone at the Ear Community Organization
www.EarCommunity.org

Here are some amazing memories from all over the world for this year’s Microtia Awareness Day!

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.

#microtia #hearingloss #advocacy #nationalmicrotiaday #nationalmicrotiaawarenessday #auralatresia #microtiakidsrock #congress #nmad #allysact

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!