Neguse, Warren, Capito, McKinley Introduce Bipartisan Microtia and Atresia Awareness Day Resolution in Honor of Constituent Ally Tumblin
Washington, D.C.— Today, Congressman Joe Neguse (D-CO), Congressman David McKinley (R-WV) Senators Elizabeth Warren (D-MA) and Shelley Moore Capito (R-WV) introduced a resolution calling for November 9th to be recognized as National Microtia and Atresia Awareness Day. Congressman Neguse is also championing legislation, titled Ally’s Act, named after his constituent Ally Tumblin, which would require insurance companies to cover specialized hearing devices used to treat microtia and aural atresia, such as bone-anchored hearing aids (BAHAs) and osseointegrated devices (OIDs).
“I’m honored to introduce this resolution in Congress, and to build on the advocacy and passion that my constituents Ally and Melissa have been growing in Colorado,” said Congressman Joe Neguse. “Ally’s bravery and ingenuity to write our office and share the idea behind Ally’s Act has begun a movement in Congress to expand access to specialized hearing devices and support individuals with microtia and aural atresia. This resolution, establishing November 9th as National Microtia and Atresia Awareness Day will continue to build awareness and help more families to leave the hospital equipped with answers for navigating these health conditions.”
“Misinformation or the lack of information about microtia and aural atresia leave far too many Americans behind,” Senator Warren said. “That’s why I’m glad to introduce this resolution to raise awareness of microtia and aural atresia, and advocate for the community of children and adults who are affected by these health conditions so that every individual with microtia and aural atresia can flourish.”
“Supporting a resolution designating National Microtia and Atresia Awareness Day serves to benefit the children and adults with this congenital anomaly, along with their loved ones and caretakers. I am proud to co-lead Ally’s Act to bring much needed awareness to the Microtia, Aural Atresia community and hope these individuals and their families can receive the information and support that they deserve,” said McKinley.
“So many of us often take for granted the ability to hear, as well as how we use our senses to effectively communicate. Establishing November 9 as Microtia and Atresia Awareness Day will help bring needed attention to this condition, while also shining a light on the hearing-loss community. We must continue to advocate on behalf of those who are impacted by Microtia and Atresia, and we must make sure that resources continue to be available to individuals who are without hearing or hearing impaired,” Senator Capito said.
“I am proud to join my bipartisan colleagues to formally recognize National Microtia and Atresia Awareness Day,” said Rep. Fitzpatrick. “Today, we have an opportunity to not only celebrate the children and adults living with microtia and aural atresia, but also, build public awareness and support for these rare but treatable conditions.”
The resolution is also cosponsored by Representatives Brian Fitzpatrick, David Trone, Emanuel Cleaver, Paul Tonko, Rodney Davis, Seth Moulton, Terri A. Sewell, Betty McCollum, Ed Perlmutter, Judy Chu, Don Bacon, David McKinley, Ro Khanna, André Carson and GK Butterfield.
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. 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.
“It is important to have national awareness days that raise awareness, encourage research and promote education about unique and rare congenital anomalies like Microtia and Aural Atresia (when a child is born with missing or underdeveloped ears and no ear canals, resulting in hearing loss),” said Melissa and Ally Tumblin, Founders of the Ear Community Organization. “We welcome National Microtia and Atresia Awareness Day - as a day to shine a light on this rare cause, but also a day to share options and resources that can improve the quality of life for the children and adults born with Microtia and Aural Atresia. This awareness day is also meant to help the children and adults born with Microtia and Atresia know they are beautiful and never alone. Along with families, medical professionals, educators, therapists and advocates we look forward to embracing National Microtia and Atresia Awareness Day every November 9th!”
“As a pediatrician and mother of a child born with Microtia and Atresia of her right ear, I embrace National Microtia and Atresia Awareness Day as a wonderful means of promoting awareness and education. Microtia and aural atresia doesn't have to negatively impact those affected, thanks to the support and information gathered by incredible organizations, health care professionals and parent advocates,” said Leslie Gonsette, MD, Internal Medicine & Pediatrics Board Certified, Ear Community Board Member. “It's important to recognize this by a nationally recognized day for Microtia and Atresia. With the right hearing devices and support, children and adults may go on to live normal, productive and happy lives, like my thriving little girl who is now six years old.”
“As a Board Member for Ear Community and someone who was born with Microtia and Atresia, I personally know the struggles that these individuals face daily and how important it is to have a day that creates a sense of community and awareness for this rare condition that is not well known. National Microtia and Atresia Awareness Day reminds people to have compassion and kindness for those who look different and patience for those who cannot hear well. This day also raises awareness of the problems that arise for those with hearing loss and the importance of passing legislation that supports overcoming such challenges,” said Rachel Bernhard, Ear Community Board Member.
See a full list of support quotes HERE.
Read text of the resolution HERE.
This resolution is endorsed by Ear Community; Academy of Doctors of Audiology; Acoustic Neuroma Association; AG Bell Association for the Deaf and Hard of Hearing; American Academy of Audiology; American Academy of Otolaryngology - Head and Neck Surgery; American Cochlear Implant Alliance; American Tinnitus Association; AudiologyOnline; Broomfield City Council Member Kimberly Groom; California Academy of Audiology; California Ear Institute; Cedars-Sinai Medical Center; Children’s Hospital of The King’s Daughters; Children's Minnesota Ear Shape Clinic; Children's Hospital of Philadelphia; Cochlear Americas; Columbia University Medical Center Departments of Audiology and Otolaryngology; Custom DME, LLC; Dallas Ear Institute Departments of Audiology and Otolaryngology; Educational Audiology Association; FACES - The National Craniofacial Association; Hear Aid Foundation; Hearing Health Foundation; Hearing Industries Association; Hearing Loss Association of America; Hear Strong; Johns Hopkins Department of Plastic Surgery and Reconstruction; John Tracy Center; Let Them Hear Foundation; Lewin Ear Reconstruction; Lucile Packard Children's Hospital Stanford; Maryland Academy of Audiology; Mass Eye and Ear; MED-EL; Medical Art Prosthetics, LLC; Microtia Congenital Deformity Institute; Nationwide Children's Hospital Ohio; New York Eye and Ear Infirmary of Mount Sinai; Oticon Medical; Personalized Prosthetics; Proliance Surgeons; Properly Made Masks; Rainbow Babies Hospital Ohio; ReconstratA; Dr. Russell H. Griffiths Ear Reconstruction; Seattle Children's Hospital; Seidman Laboratory; University of Southern California School of Medicine – Otolaryngology; South Carolina Academy of Audiology; SpeechPathology.com; Stanford Children's Health; Suh Hermsen Strap, LLC; Texas Children's Hospital; USC Keck School of Medicine/Cochlear Implant Center; and the University of Virginia Medical Center.
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