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!
