Archives for November 10, 2021

Congressman Joe Neguse showing his support for the Microtia and Atresia community.

On Tuesday, November 9th, 2021, the Ear Community Organization celebrated its 6th National Microtia Awareness Day, but this year was extra special! The Founders of the Ear Community Organization, Ally and Melissa Tumblin, wanted to make the awareness day more complete. The Tumblin Family originally established National Microtia Awareness Day but wanted to include the Aural Atresia community as Microtia and Atresia often go together. Thanks to Congressman Joe Neguse for already helping Ally Tumblin champion a piece of hearing health legislation called Ally’s Act, Ally and Melissa decided to reach out to Congressman Neguse again, asking if he would help them and he said yes! As a result, yesterday, Congressman Joe Neguse (D-CO) sponsored and introduced a resolution that would delegate November 9th as National Microtia and Atresia Awareness Day, alongside co-sponsors Congressman David McKinley (R-WV) and Senators Elizabeth Warren (D-MA) and Shelley Moore Capito (R-WV).

Ally Tumblin wearing her Microtia Awareness Day t-shirt.

Microtia and Atresia are rare congenital anomalies that occur during the first trimester of pregnancy. Microtia occurs when the ears do not fully develop or are missing and Aural Atresia occurs when the ear canals are underdeveloped, resulting in hearing loss. Melissa Tumblin stated, “It is important to have national awareness days that raise awareness, promote public education and encourage research about unique and rare congenital anomalies like Microtia and Aural Atresia. It is also the intention of National Microtia and Atresia Awareness Day to help future generations of families have good information when leaving the hospital, equipping them with more answers than questions and their dreams for their child intact. Through our national awareness day, we hope that children and adults born with Microtia and Atresia know they are beautiful and never alone.” Many families today still leave hospitals without answers to their questions as to why their child was born with Microtia and Atresia. Mothers often blame themselves thinking they must have done something during their pregnancy that caused this even though they had perfectly healthy pregnancies. Concern about public stares and bullying of their child can often consume the minds of parents as well as wondering what options are available that can provide a better quality of life for their child.

University of Michigan Microtia and Atresia surgical team.

Over the years, the Ear Community Organization has brought the Microtia and Aural Atresia community together through its awareness day! Microtia and Atresia families alongside medical professionals, therapists, teachers of the deaf and hard of hearing, researchers and hearing device companies come together to educate, embrace and celebrate the children and adults within our community! This is a day where many join together at organized events where doctors educate families through Microtia and Atresia clinics, offer grand rounds or organize ear carving workshops for plastic surgery residents. Audiologists and hearing device companies share information about hearing loss and the options for treating hearing loss. Teachers of the deaf and hard of hearing, therapists and families make the day special in the school classroom for children educating about hearing loss, differences and being unique. Some read stories such as “Wonder” while enjoying cookies and cupcakes while others organize fun events that help educate and inform about all options. This year, we had many embrace National Microtia and Atresia Awareness Day in the United States, Canada, Mexico, Columbia, Ecuador, Argentina, Chile, India, Mongolia, the UK, Russia, Poland, Malaysia and South Africa to name a few. It is always wonderful to see such pride and advocacy circulate throughout the community during our awareness day! Individuals celebrate by wearing Microtia t-shirts, making educational videos and posts, baking ear cookies and get tattoos reflecting November 9^th. It is amazing to watch this each year from the Microtia and Atresia community.

The Tumblin Family on National Microtia Awareness Day (2019)

The Ear Community Organization is grateful that our lawmakers are advocating alongside members of the Microtia and Atresia community!
“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.”
Ear Community Board member, Dr. Leslie Gonsette stated “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 & 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. 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.”
Ear Community Board member, Rachel Bernhard stated, “As 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.”

Thank you to the following co-sponsors who signed on to support this resolution and who believe in advocating for the Microtia and Atresia community:
Senator Ed Markey (D-MA), Congressman David Trone (D-MD), Congressman Emanuel Cleaver II (D-MO), Congressman Brian Fitzpatrick (R-PA), Congressman G.K Butterfield (D-NC), Congressman Paul D. Tonko (D-NY), Congressman Rodney Davis (R-IL), Congressman Seth Moulton (D-MA), Congresswoman Terri Sewell (D-AL), Congresswoman Betty McCollum (D-MN), Congressman Ed Perlmutter (D-CO), Congresswoman Judy Chu (D-CA), Congressman Don Bacon (R-NE), Congressman Ro Khanna (D-CA) and Congressman Andre Carson (D-IN).

Nearly 70 endorsers from renown medical facilities, hearing loss organizations, hearing device manufacturers, audiology and Otolaryngology academies, Microtia and Atresia repair specialists and more took the time to support this resolution knowing how much lack of information is available on Microtia and Aural Atresia. Twenty-four endorsers also provided quotes in support of National Microtia and Atresia Awareness Day.
A special thank you to the following endorsers:
Ear Community Organization
Academy of Doctors of Audiology (ADA)
Acoustic Neuroma Association (ANA)
AG Bell Association for the Deaf and Hard of Hearing (AG Bell)
American Academy of Audiology (AAA)
American Academy of Otolaryngology – Head and Neck Surgery (AAO-HNS)
American Cochlear Implant Alliance (ACIA)
American Tinnitus Association (ATA)
AudologyOnline (AO)
Broomfield City Council Member Kimberly Groom
California Academy of Audiology (CAA)
California Ear Institute (CEI)
Cedars-Sinai Medical Center
Children’s Hospital of Philadelphia (CHOP)
Children’s Hospital of The King’s Daughters
Children’s Minnesota Ear Shape Clinic
Cochlear Americas
Columbia University Medical Center
Custom DME, LLC
Dallas Ear Institute
Educational Audiology Association (EAA)
FACES – The National Craniofacial Association
Hear Aid Foundation
Hearing Health Foundation (HHF)
Hearing Industries Association (HIA)
Hearing Loss Association of America (HLAA)
HearStrong
Johns Hopkins Department of Plastic Surgery and Reconstruction
John Tracy Clinic
Let Them Hear Foundation
Lewin Ear Reconstruction
Lucille 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
New York Eye and Ear Infirmary of Mount Sinai
Oticon Medical
Personalized Prosthetics
Proliance Surgeons
Properly Made Masks
Rainbow Babies Hospital
ReconstratA
Dr. Russell H. Griffiths Ear Reconstruction
Seattle Children’s Hospital
Seidman Laboratory
South Carolina Academy of Audiology
Stanford Children’s Health
Suh Hermsen Strap, LLC
Texas Children’s Hospital (TCH)
USC Keck School of Medicine – Cochlear Implant Center
University of Southern California School of Medicine (USC)
University of Virginia Medical Center

International endorsers:
University of West England (UK)
Proyecto Microtia (Argentina)
Audio Centro Latin America (Ecuador)
Great Ormand Street Hospital (UK)
Oticon Medical (Denmark)
Dr. Joe Dusseldorp (Australia)
University Medical Center Rotterdam (Netherlands)

For the full press release for the introduction of the Resolution for National Microtia and Atresia Awareness Day, click here.

For the full list of quotes for the Resolution for National Microtia and Atresia Awareness Day, click here.

For the Resolution for National Microtia and Atresia Awareness Day, click here.

It has always been the Ear Community’s mission to educate on all options so each one of our children and adults can be informed and make the best decisions in life that will give them the most happiness in feeling whole. Through this national awareness day, families will be able to find information and resources about Microtia and Atresia that not only can help them, but also help them feel not so alone. Along with always promoting all options, Ear Community has also championed genetic research on Microtia and Atresia. Our organization is thankful for being able to collaborate with Seidman Labs (Harvard), MIT – the Broad Institute, Vanderbilt and the Gabriella Miller Kids First Foundation and we look forward to our findings being published in 2022 on why Microtia and Aural Atresia happen. Thank you to Congressman Joe Neguse for your passion and dedication for helping constituents like the Ally Tumblin and her family! A special thank you to Ryan Shuman and Sally Tucker in Congressman Neguse’s office for working so hard to get our resolution, 1-pager, co-sponsors and press release together for our introduction! Thank you to Congressman Neguse’s office for listening to our community and for your dedication to helping advocate for the Microtia and Atresia community, including Ally Tumblin. We look forward to embracing National Microtia and Atresia Awareness Day with the world again next year!

The Ear Community Organization
www.EarCommunity.org

Here are some great memories from National Microtia and Atresia Awareness Day 2021!

November 9th, 2021
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.