May is Better Hearing and Speech Month!
What better way to embrace this month of awareness than to help give back by helping someone in need with the gift of hearing!

Meet Eddie! Eddie lives in Washington state and was born with Grade IV microtia and aural atresia. Early on during childhood, Eddie had four surgeries to have his right ear reconstructed. After completing his fourth surgery, Eddie was informed of one more surgical option that could help restore his hearing in his right ear. However, without the same support systems during his last surgery, he was traumatized by the process and decided not to proceed with the final surgery that would allow him to hear.

As a musician, singer, songwriter – Eddie realized he was struggling with his hearing over the years. He recently decided to visit with an audiologist who shared about a hearing restoration solution that would help him hear better! Eddie was educated and informed about a bone anchored hearing system as an option that could help improve his hearing. After discovering this hearing device technology, he also discovered how expensive this hearing device is and that his insurance provider was not going to cover a bone anchored hearing system for him. Once again, Eddie was left feeling discouraged about finding a way to hear better. Thankfully, Eddie was told about the Ear Community Organization!

Eddie reached out to the Ear Community Organization asking for help obtaining a bone anchored hearing device. After discussing which option would be best for him, his audiologist suggested the Ponto 5 Mini by Oticon Medical. After trying on a bone anchored hearing device in his audiologist’s office, he realized how much he could hear! He also realized how much hearing he was missing out on! He reached out to the Ear Community Organization for help to obtain a Ponto 5 Mini. Ear Community proudly responded letting Eddie know that the organization would help him obtain a newly donated Ponto 5 Mini from Oticon Medical! Eddie had found a way that would allow him to hear fully for the first time in his life! All Eddie’s life, he’s lived only hearing out of his left ear. Now, he has the opportunity to begin a new journey toward getting a hearing device that will change that forever. Eddie is excited to finally hear as close to a typical person as he can! Eddie is also a recipient of Ear Community’s hearing fund called Pax’s Ear Fund where he was able to obtain support toward the fitting and programming fee for his new Ponto 5 Mini!

A special thank you to Oticon Medical for helping Eddie hear his best with a newly donated Ponto 5 Mini and thank you to Eddie’s audiologist, Dr. Anne Harvey, for educating and informing Eddie about how a bone anchored hearing system could improve his quality of life! A special thank you to the Gross Family Foundation for making Pax’s Ear Fund possible so together with Ear Community and audiologists, our organization can continue giving the gift of hearing to members within the microtia and atresia community! Eddie has chosen to be implanted with his Ponto 5 Mini and will be fitted this June! Most of all, a very special thank you to Eddie’s fiance, Elena, for being his rock, his support system and for encouraging him to take the next step to hearing better!

Congratulations on hearing your best, Eddie! Our organization and so many others are so happy that you can now focus on doing what you love in your career as a musician, singer, songwriter! #betterhearingandspeech  #betterhearingandspeechmonth2023
Thank you,
Melissa Tumblin
Executive Director
EarCommunity.org

“Ally’s Act” is a National level bipartisan bicameral bill inspired by 13-year-old, Ally Tumblin, that would Expand Access to Specialized Hearing Devices through insurance

Here’s how to advocate for this piece of legislation!
On March 30th, 2023, Congressman Joe Neguse (D-CO) re-introduced Ally’s Act, H.R. 2439, along side Congressmen Brian Fitzpatrick (R-PA) and Mike Thompson (D-CA). Senators Shelley Moore Capito (R-W.A) and Elizabeth Warren (D-MA) are leading Ally’s Act through the Senate. Ally’s Act, S. 1135 was re-introduced by Senator Capito on April 14th, 2023. H.R. 2439 and S. 1135 would ensure coverage for bone anchored hearing aids and cochlear implants which are often denied by private insurers as not being medically necessary or excluded from insurance plans. The bill would cover the cost of the hearing devices, provide an upgrade every 5 years, cover the cost of surgery including associated appointments and services that come along with the treatment of these hearing devices. This bill would cover both children and adults from birth to age 64! Bone anchored hearing devices and cochlear implants are used by children and adults who have hearing loss types that cannot benefit from traditional hearing aid technology. With passage of Ally’s Act, H.R. 2439/S. 1135, every state would benefit from the services under this bill through private insurers.

Our lawmakers need to hear from everyone in our community and from the families and individuals who have been denied coverage for these hearing devices! We are asking for everyone to write to your local Congressmen and Senators in every state, asking them to co-sponsor Ally’s Act, H.R. 2439 and S. 1135. Friends, relatives, medical professionals, teachers – everyone can help champion this legislation by advocating through letters, phone calls, emails and scheduling appointments with your local lawmakers. *** IMPORTANT:  IF YOU ALREADY WROTE LETTERS ADVOCATING FOR ALLY’S ACT IN 2019, 2020, 2021 AND 2022, YOU NEED TO WRITE AGAIN DURING THIS SESSION REFERENCING THE BILL NUMBERS FOR THE 118TH SESSION (H.R. 2439 and S. 1135).

You can find boiler plate template letters and call scripts on Ear Community’s website as well as the 1-pager and list of endorsers that would need to be mailed or handed in with your letters. Everything is already created to help make things easy, but personal letters are encouraged!
Allys-Act-1-pager-for-118th-session-1
Ally’s Act Endorsements

How to find your Congressman and Senators to write to:
It is very important that you ask your local Representative to co-sponsor this bill. This is the Representative that directly serves the district in which you live in. Here are two links that will help you find who your local Representative is to write to:
You can find out who your local Congress representative is at the following link here.
You can find out who your local Senate representative is at the following link here.

It is very important that we advocate for this legislation! Everyone has a voice and it matters! Bills do not pass themselves. So, please help us by advocating for this legislation! Many families take their children to meet with their local Representatives when asking them to co-sponsor Ally’s Act. This is such a wonderful experience to be a part of! Thank you to everyone for helping us get Ally’s Act passed! Ally’s Act would help our children today, but also when they become adults tomorrow! Ally’s Act also helps the individuals who have lost their hearing overnight due sensorineural hearing loss or due to head trauma from an accident, or damage to hearing from tumors such as cholesteatomas and acoustic neuromas or from otitis media and from drug ototoxicity from medication treatment.

“For Ally and for countless Americans across this nation, specialized hearing devices are critical for communicating. For insurance companies to deny coverage for these essential devices is unconscionable. We must continue to push for the enactment of this legislation to expand critical care for so many. I am thankful to Ally and her family for bringing this issue to our attention, and proud to continue the fight,” said Congressman Joe Neguse.

“When an insurance provider denies coverage for a child or adult to obtain a bone conduction hearing device or cochlear implant, the opportunity for communication and to pursue certain careers is taken away. It is imperative that private insurers provide access to these types of hearing devices, including the necessary hearing health care that is associated with them. Ally’s Act would ensure coverage for these hearing devices, improving the lives of hundreds of thousands of people, “ said Melissa Tumblin, Ally’s Mother and the Founder and Executive Director of Ear Community.

The bill is widely supported, with many individuals born with microtia and atresia calling on lawmakers to get Ally’s Act passed.

Shannon Culbertson is an audiologist who was born with bilateral microtia and atresia–meaning both ears and ear canals are missing. Culbertson chose her career because she wanted to help others with hearing loss. On the reintroduction of Ally’s Act Shannon Culbertson, Au.D. and Ear Community Board Member, stated: “As an audiologist that wears a bone conduction hearing device, I have personally felt the frustration of insurance denying coverage for my ability to access communication in my everyday environment. Insurance coverage should not dictate who has access to sound. Ally’s Act will improve the quality of life and peace of mind for individuals and families that rely on these devices for spoken language”.

Rep. Neguse and his colleagues introduced this legislation in both the 116th and 117th sessions of Congress.

“Hearing loss challenges millions of Americans every year, and access to these devices can vastly improve quality of life,” said Congressman Fitzpatrick. “I’m proud to co-lead this bipartisan, bicameral legislation that will make a difference for those suffering from hearing loss.”

“Millions of Americans experience disabling hearing loss and having access to hearing implants is essential to the well-being of those who experience varying levels of deafness,” said Congressman Thompson. “As one of those Americans who lives with hearing loss, I am proud to reintroduce Ally’s Act with Reps. Neguse and Fitzpatrick and Senators Warren and Capito to make sure that private insurance covers needed hearing technologies. This bill will help to secure a bright future for American children who have experienced hearing loss.”

“Auditory implant devices and external sound processors can be life-changing for individuals who suffer from severe hearing loss. That’s why I’m proud to reintroduce Ally’s Act, legislation that would ensure insurance companies cover these hearing aids and provide relief to those born with hearing loss and their families. Our senses are something we too often take for granted, and I will continue to work to establish better access to these critical hearing devices,” Senator Capito said.

“Too many people across the United States can’t access critical and life-changing hearing devices because they just can’t afford them,” said Senator Warren. “I wrote the bill that made hearing aids available over-the-counter, and I am excited to reintroduce a bipartisan bill that will ask insurers to chip in so those who need specialized hearing devices can access them.”

Ally Tumblin asking for advocates to support Ally’s Act, H.R. 2439 and S. 1135.

The Tumblin Family, the Ear Community Organization along with its endorsers and the Deaf and Hard of Hearing Community are grateful for this piece of legislation and for the leadership behind this bill! Please help us advocate for Ally’s Act, H.R. 2439 and S. 1135!

Thank you,
Melissa Tumblin
Founder – Executive Director
Ear Community

Ear Community hosts picnics every year around the world helping bring Microtia and Atresia families together. This year’s picnics will take place in the United States in San Mateo, California/ Raleigh, North Carolina/ Plano, Texas/ Brookline, Massachusetts/ Nashville, Tennessee/ and Hamilton, Ontario Canada! It is very exciting for many families! Everyone enjoys attending our picnics and our Ear Community picnics always offer such a wonderful opportunity for Microtia and Atresia families to come together, share experiences with each other, and maybe even make a new friend. Medical professionals such as world renown Microtia and Atresia repair surgeons, anaplastologists, ENTs, audiologists, and therapists along with the world’s leading hearing device companies all come together to mingle with us at our picnics, helping educate us on all of our options including hearing loss.

Event locations for 2023
June 3rd – San Mateo, California (in collaboration with Stanford)
June 17th – Raleigh, North Carolina (in collaboration with Chapel Hill)
June 24th – Plano, Texas
June 24th – Brookline, Massachusetts  (in collaboration with Harvard)
July 15th – Nashville, Tennessee (in collaboration with Vanderbilt)
July 22nd – Hamilton, Ontario Canada (in collaboration with Sunnybrook, McMaster University & Sick Kids)
* To RSVP, send an email to Melissa at:  EarCommunity@gmail.com

Our events are held outdoors providing a relaxed environment and so the kids can play.

A special thank you to our amazing Ear Community Sponsors!
Platinum Sponsor – Cochlear Americas
Gold Sponsor – Oticon Medical
Silver Sponsor – MED-EL USA

*** This year’s Ear Community events are made possible thanks to our organization’s proud sponsors, donor organizations and our community contributors! Without the continued support of our sponsors, donor organizations and community contributors, we would not be able to bring our Microtia and Atresia families together at our events as we have done for the past decade. We also would not be able to work on all of the research and studies that our organization contributes to that help benefit our community in the future. Ear Community is thankful and appreciates the continued support from all of our supporters! Your support means the world to our families, our community and to our organization! ***

We look forward to seeing everyone at our Ear Community picnics this year!
Melissa Tumblin
Ear Community
Microtia and Atresia Support Group on Facebook

FOR IMMEDIATE RELEASE:

Thursday, March 30, 2023

Contact: Hannah Rehm
Hannah.Rehm@mail.house.gov

Rep. Neguse Reintroduces “Ally’s Act,” Bipartisan Bill Inspired By 13-Year-Old Constituent, to Expand Access to Specialized Hearing

Washington, D.C. — Today, Congressman Joe Neguse (D-CO) announced the introduction of “Ally’s Act,” H.R. 2439, his bicameral, bipartisan legislation to ensure private insurance companies cover osseointegrated hearing devices (“OIDs”), including bone anchored hearing aids (“BAHA”) and cochlear implants. Representatives Brian Fitzpatrick (R-PA) and Mike Thompson (D-CA), and Senators Shelley Moore Capito (R-WV) and Elizabeth Warren (D-MA) joined the reintroduction (S. 1135). A 13-year-old Coloradan, Ally, who was born without a right ear or hearing canal and requires the use of a BAHA, inspired the bill.

After Ally’s insurance company denied coverage of her hearing device, her mother, Melissa Tumblin, formed the organization Ear Community to advocate for insurance coverage of these devices to ensure no person is left unable to hear because of private insurance companies’ refusal to provide coverage. During his first term in Congress, Congressman. Neguse received a letter from Ally detailing her circumstances; after learning about her situation Congressman Neguse introduced legislation to expand coverage for Americans like Ally.

“For Ally and for countless Americans across this nation, specialized hearing devices are critical for communicating. For insurance companies to deny coverage for these essential devices is unconscionable. We must continue to push for the enactment of this legislation to expand critical care for so many. I am thankful to Ally and her family for bringing this issue to our attention, and proud to continue the fight,” said Congressman Joe Neguse.

“When an insurance provider denies coverage for a child or adult to obtain a bone conduction hearing device or cochlear implant, the opportunity for communication and to pursue certain careers is taken away. It is imperative that private insurers provide access to these types of hearing devices, including the necessary hearing health care that is associated with them. Ally’s Act would ensure coverage for these hearing devices, improving the lives of hundreds of thousands of people, “ said Melissa Tumblin, Ally’s Mother and the Founder and Executive Director of Ear Community.

The bill is widely supported, with many individuals born with microtia and atresia calling on lawmakers to get Ally’s Act passed.

Shannon Culbertson is an audiologist who was born with bilateral microtia and atresia–meaning both ears and ear canals are missing. Culbertson chose her career because she wanted to help others with hearing loss. On the reintroduction of Ally’s Act Shannon Culbertson, Au.D. and Ear Community Board Member, stated: “As an audiologist that wears a bone conduction hearing device, I have personally felt the frustration of insurance denying coverage for my ability to access communication in my everyday environment. Insurance coverage should not dictate who has access to sound. Ally’s Act will improve the quality of life and peace of mind for individuals and families that rely on these devices for spoken language”.

Rep. Neguse and his colleagues introduced this legislation in both the 116th and 117th sessions of Congress.

“Hearing loss challenges millions of Americans every year, and access to these devices can vastly improve quality of life,” said Congressman Fitzpatrick. “I’m proud to co-lead this bipartisan, bicameral legislation that will make a difference for those suffering from hearing loss.”

“Millions of Americans experience disabling hearing loss and having access to hearing implants is essential to the well-being of those who experience varying levels of deafness,” said Congressman Thompson. “As one of those Americans who lives with hearing loss, I am proud to reintroduce Ally’s Act with Reps. Neguse and Fitzpatrick and Senators Warren and Capito to make sure that private insurance covers needed hearing technologies. This bill will help to secure a bright future for American children who have experienced hearing loss.”

“Auditory implant devices and external sound processors can be life-changing for individuals who suffer from severe hearing loss. That’s why I’m proud to reintroduce Ally’s Act, legislation that would ensure insurance companies cover these hearing aids and provide relief to those born with hearing loss and their families. Our senses are something we too often take for granted, and I will continue to work to establish better access to these critical hearing devices,” Senator Capito said.

“Too many people across the United States can’t access critical and life-changing hearing devices because they just can’t afford them,” said Senator Warren. “I wrote the bill that made hearing aids available over-the-counter, and I am excited to reintroduce a bipartisan bill that will ask insurers to chip in so those who need specialized hearing devices can access them.”

Find more information on the bill HERE and bill text at HERE.

This bill is endorsed by over 55 advocacy, academic, and non-profit organizations, including Ear Community; American Academy of Audiology; American Cochlear Implant Alliance; American Pediatric Surgical Association; American Society of Pediatric Otolaryngology; American Speech-Language-Hearing Association; Columbia University Irving Medical Center and Otolaryngology; Harvard Medical School – Massachusetts Eye and Ear/Otolaryngology; Hearing Industries Association; Hearing Loss Association of America; Hearing Health Foundation; Johns Hopkins Cochlear Implant Center, National Rural Health Association; New York Eye and Ear Infirmary of Mount Sinai; Stanford Microtia and Atresia Clinic; and University of California San Francisco Medical School.

The full list of endorsements can be found below here

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On January 30th, 2023, the Ear Community Organization launched a new hearing health care program, called Pax’s Ear Fund, that is helping give the gift of hearing in many ways! Since the launch of the new hearing health program, three children in the microtia and aural atresia community have already benefited from this wonderful fund! Melissa Tumblin, Founder and Executive Director of the Ear Community stated, “When insurance companies deny coverage for the service fee that is required to fit and program hearing devices to a patient’s specific level of hearing loss, this takes away the opportunity for patients to hear. Children and adults end up having to do without.” While there are codes in place for fitting and programming traditional hearing aids and cochlear implants, there is not a code for programming Bone Anchored Hearing Systems.

The good that Pax’s Ear Fund provides to the microtia and atresia community is two-fold. This fund not only gives patients the opportunity to hear despite being denied coverage for this service by their insurers, but also gives audiologists the opportunity to still provide the gift of hearing to patients in need. The Ear Community is happy help three children so far this year! As a result, we hope these children will continue thriving in the school classroom and in their communities hearing their best! Pax’s Ear Fund also helps adults too!

It is Ear Community’s goal to help as many children and adults to hear their best as much as possible. Pax’s Ear Fund is made possible by a sweet little boy named Pax who was born with microtia and atresia. Pax and his family know how important it is to help provide the gift of hearing to those in need. Ear Community is grateful for Pax’s Ear Fund! Pax’s fund gives Ear Community the opportunity to help give back to the Deaf and Hard of Hearing Community when helping members of the microtia and atresia community thrive.

Below are our recipients who have benefited from Pax’s Ear Fund so far.  A special thank you to Dr. Rachel Goldsmith at The Listening Center at GA Ear, Nose, and Throat Specialists and to Dr. Kim Block at Lakeside Audiology in South Carolina for helping find one more way to help your patients in need!

Thank you,
Ear Community
EarCommunity.org