National Microtia and Atresia Awareness Day – November 9th, 2022

On Wednesday, November 9^th, 2022, National Microtia and Atresia Awareness Day was embraced and celebrated throughout the world by promoting awareness and education about the rare congenital anomaly called Microtia and Aural Atresia. Microtia occurs when the outer ears do not fully develop during the first trimester of pregnancy. Aural Atresia occurs when the ear canals do not fully develop or are absent, causing hearing loss. Microtia occurs in 1 out of every 6,000 children born in the United States (approximately 660 babies born each year). This awareness day was established by the Ear Community Organization, taking place every November 9^th, honoring the beautiful children and adults in our community with this condition. Below is our story from this year’s National Microtia and Atresia Awareness Day spotlighting some of the many ways awareness and education was spread on November 9th:

National Microtia and Atresia Awareness Day gives our community the opportunity to shine a light on our rare cause. On this day, medical professionals specializing in Microtia and Aural Atresia repair host clinics educating families who have loved ones with Microtia and Atresia. Medical device companies educate on how individuals with Microtia and Atresia can benefit from specialized hearing devices they offer called Bone Anchored Hearing Devices or Bone Conduction Hearing Systems. Medical device companies offering surgical implants that can help create an outer ear or correct facial asymmetry during reconstruction also enjoy embracing our community on this day. Posts on social media channels include educating about all the options for Microtia and Atresia. This day also provides a platform for families and teachers to educate and promote awareness about Microtia and Atresia in schools. Advocates often wearing supportive t-shirts, awareness wristbands and often bringing in ear shaped cookies or cupcakes with our awareness ribbon on them talk about our cause. Parents, teachers of the Deaf and hard of hearing, speech therapists and early intervention providers speak with children about differences, being unique, acceptance, and being kind in the school classroom. Some children and parents give presentations on Microtia and the type of hearing device that can help someone hear when they are born with Aural Atresia. Some discuss how everyone is different in their own way such as wearing eyeglasses, they share about their

Educating in the school classroom.

journey and being a role model. Special events are often organized on this day by schools for the Deaf and Hard of hearing and by Teachers of the Deaf/HH as well throughout the states. Many of Ear Community’s Sponsors enjoy educating on hearing device technology and how children and adults with Microtia and Atresia can benefit from these specialized hearing devices. This year, Oticon Medical Sponsored t-shirts for children and staff at the Summit Speech School in New Jersey. These families enjoyed coming together on November 9^th with their beautiful children, making it an extra special day! Many community members find our day as a special day they look forward to celebrating each year, including some who’s birthdays fall on our awareness day!

Many countries embrace National Microtia and Atresia Awareness Day as this was not only a much-needed day to raise awareness, but individuals born with Microtia and Atresia are often an under-served community. Awareness and advocacy were needed for this cause. It is amazing to see the world embrace our special day, every year, promoting education and awareness. Some of the many countries embracing National Microtia and Atresia Awareness Day include the United States, Canada, Mexico, Columbia, India, Russia, Ecuador, Bolivia, Argentina, Puerto Rico, Costa Rica, Poland, Russia, Japan, China, Mongolia, the UK, Malaysia, Australia, Denmark, Brazil, France, and South Africa just to name a few.

Harvard researchers with Seidman Labs (Barbara McDonough and Angela Tai)

One of Ear Community’s goals as a nonprofit was to work on research, with the hope of finding the answers to the questions surrounding why Microtia and Atresia happen. Most families have often never heard of Microtia or Atresia when a child is born into their family with this rare congenital anomaly. However, other families have multiple family members affected with Microtia and Atresia throughout generations. While there is little understanding of what causes Microtia and Atresia, there are new genetic findings that show damaging genetic variants cause Microtia and Atresia and Craniofacial Microsomia. Ear Community’s founder, Melissa Tumblin, didn’t want another mother to ever blame herself thinking she must have done something during her pregnancy to cause her child’s ears to be missing or underdeveloped. After a five-year grant research project collaborating with Harvard Medical School (Seidman Labs), Vanderbilt University Medical Center, MIT – the Broad Institute, the NIH, the Gabriella Miller Kids First Foundation, Seattle Children’s Hospital and many contributing organizations, our community now has new information that can help us understand why Microtia and Atresia may happen. This year alone, our primary investigator, Dr. Dan Quiat of Harvard Medical School, published two papers on these new findings helping us understand what damaging mutations cause Microtia and Atresia and Craniofacial Microsomia. We are grateful to the researchers who have worked incredibly hard to help our community find the answers we are looking for! This genetics information can be found on Ear Community’s website here.

Dr. Ashesh Bhumkar in India of Bhumkar ENT & Microtia-Atresia Hospital .

Many medical professionals embrace November 9^th by educating online about the options for Microtia and Atresia. Some wear t-shirts and wristbands while hosting clinics to help support and educate these families. Some like Dr. Ashesh Bhumkar of India (Bhumkar ENT & Microtia-Atresia Hospital), donate their time and service to reconstruct an ear for one lucky child on November 9^th! Some medical facilities that embrace National Microtia and Atresia Awareness Day include Stanford Children’s Hospital, Texas Children’s Hospital, Seattle Children’s Hospital, Children’s Hospital Colorado, University of Pittsburgh Medical Center and Children’s Hospital of Pittsburgh, Vanderbilt University Medical Center and the Monroe Carell Children’s Hospital, Harvard Mass Eye and

Dr. Angelo Leto-Barone with Nemours Children’s Health.

Ear, NY Eye and Ear Infirmary of Mt. Sinai, Nemours Children’s Health, Children’s Minnesota, University Hospitals, Johns Hopkins, including many audiology and ENT academies and organizations as well as many hearing loss organizations just to name a few. This year, Ear Community hosted a global presentation on “Let’s Talk About Microtia and Atresia” educating on the options for our rare cause as well as why the Ear Community Organization was founded. Families and health care professionals including social workers, teachers of the D/HH, and therapists joined this presentation from all over the world from Ghana, Ethiopia, Mexico, Canada, Australia, Malaysia, Japan, Argentina, Ecuador, and many from the United States. Moments like this are what Ear Community was founded on, helping bring Microtia and Atresia families together from all over the world. This presentation can be viewed here.

Many news articles were published on National Microtia and Atresia Awareness Day sharing about our community and organization’s story. This year, Ear Community made International Business Times as well as being nominated and recognized as “Nonprofit of the Day” by Philanthropi! We would like to thank

International Business Times on National Microtia and Atresia Awareness Day.

everyone who has supported the Ear Community Organization and our mission since 2010! 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. We are grateful for the beautiful community we have created and brought together. Every child and adult who has Microtia and Atresia is truly unique and amazing. We hope that you never let your sweet little ears or hearing loss ever define you because you can be something truly amazing! We also hope no one with Microtia and Atresia ever feels alone because you have all of us!
Thank you,
Ear Community
www.EarCommunity.org