Delaney Yates receives Ear Community’s college scholarship

Delaney Yates, Ear Community college scholarship recipient, August of 2023, Missouri University.

Delaney Yates, Ear Community college scholarship recipient, August of 2023, Missouri University.

August 2023
Congratulations to Delaney Yates for being awarded our latest Ear Community college scholarship!

Delaney was born with microtia and atresia of her right ear and grew up on a farm in Iowa. She has been involved with sports and volunteering and shows cattle through 4-H Club. Delaney has learned to advocate for herself over the years, especially because of her hearing loss in her right ear. She makes sure she is seated in a good spot in classrooms so she can hear the teacher better, she is often use to turning her head to hear things and always asks questions if she feels she missed something.

Delaney’s inspiration is her biological mom, who was a CNA (certified nurses assistant). Delaney would like to become a nurse to honor her mom and because she saw how much her mom loved helping people. Delaney has been accepted to the University of Missouri and is excited to begin her college career! She also hopes to meet someone else in school who has microtia and atresia so someone else can understand how she feels with hearing loss in one ear and microtia.

Congratulations, Delaney! We are SO PROUD of YOU!!! You’ll become an amazing nurse, we just know it! Do great things, Delaney!

Thank you!
Melissa Tumblin
Founder – Executive Director

Ear Community

Ear Community welcomes new Board of Director member, Elizabeth Mazer

August 23, 2023
Welcome to Elizabeth Mazer! Liz has been a part of our organization for the past few years ever since her nephew, Barrett, was born with bilateral microtia and atresia. I have to say that Liz is an AMAZING person and I am so happy to have her in my life and to be a part of Ear Community!

Liz has helped with fundraising for Ear Community, she has helped to educate

Elizabeth Mazer, Ear Community Board Member

Elizabeth Mazer, Auntie to her nephew, Barrett, who was born with BMA.

others about microtia and atresia and she has helped advocate for Ally’s Act over the years! In fact, Liz joined us during our Fly-In week during the last week of July to be with us on Capitol Hill. Liz met with her Congressman in person to ask him to cosponsor Ally’s Act! Liz is also an amazing donor to our cause and community!

Liz is a trader for an alternative asset manager in Virginia. Her nephew, Barrett, was born with bilateral Microtia and Atresia and is aided with two Oticon Ponto 5 Mini sound processors. Liz’s sister, Nicole (Barrett’s mom) is also an amazing mother, advocate and supporter of our cause and organization!

Please welcome Liz to our Ear Community Board!
Thank you!
Melissa Tumblin
Ear Community

Ear Community welcomes new Board of Director Member, Noelle McFarland

Noelle McFarland, Ear Community Board Member

Noelle McFarland, Ear Community Board Member

June 13, 2023
Meet Noelle! Noelle is an amazing advocate in our community! She was born with Microtia and Atresia of her right ear. She has not had reconstructive surgery, nor is she aided with a hearing device. And yet, she is an amazing ROCK STAR! Many of us in our community know her as a popular and well respected performing singer/songwriter! Noelle earned her music degree at the prestigious Belmont University in Nashville – proving how so many of our children and adults with Microtia and Atresia have a love for music!

Noelle has been a member of our Ear Community Organization for years! In fact, Noelle has performed at our Vanderbilt Ear Community Microtia and Atresia event in Nashville for the past three years now (excluding Covid). Even when Noelle’s parents found our support group, her family has been a part of our posts and events over the years and they have been wonderful supporters and donors to our organization as well.

Welcome to Ear Community in your new role, Noelle!
Melissa Tumblin
Founder – Executive Director
Ear Community

*** You can check out Noelle and her beautiful voice and music here!

The William, Jeff & Jennifer Gross Family Foundation Donates More Than $18 Million to Non-Profits in 2023

William Jeff and Jennifer Gross Family Foundation

William Jeff and Jennifer Gross Family Foundation

 

 

 

 

 

 

The Gross Family Foundation donated more than $18 million to 67 non-profits and charities in 2023, the most recipients ever in a single year for the Gross Family Foundation! “Jennifer, Jeff and I are pleased to continue our tradition of giving to organizations that provide immeasurable benefits to the communities they serve,” said Mr. Gross, a philanthropist, author and the co-founder of Newport Beach-based, fixed income asset manager PIMCO.”

Many of you may remember my post from last year sharing how much of a struggle it had become for me to keep Ear Community going as a small grassroots nonprofit. Many small nonprofits do not make it past five years. Ear Community will proudly turn 14 years old this May! However, the journey has not been easy and I was beginning to feel defeated no matter how successful my work was for our community. Especially when you have very little funding and no staff to help. Thanks to the incredible gift of support received from the William, Jeff and Jennifer Gross Family Foundation, one of the new programs Ear Community launched last year for the Microtia and Atresia community was Pax’s Ear Fund, which allows for audiologists to be reimbursed for the fitting/programming fee to help their patients still receive the gift of hearing when insurance denies this service. Ear Community plans to also launch another new program called Pax’s Eyewear to help children with eye and sunglasses when they have no ears to hold them up. Our Ear Community Organization is incredibly grateful for the continued support and generosity from the William, Jeff & Jennifer Gross Family Foundation!

As the Founder of Ear Community and as Ally’s Mom, I am incredibly honored and so very grateful to have found this support through the Gross Family Foundation for our community! Ear Community has been a game changer for the Microita and Atresia community since 2010, helping hundreds of thousands of children and adults and their families all over the world! Thank you for helping our organization to continue it’s work, passion and dedication when serving the Microtia and Aural Atresia community! No words can explain how incredibly grateful our organization is for your Family’s support!

Click here for press release.

Thank you so very much for giving back to the community!
Melissa Tumblin
Founder, Executive Director
Ear Community

May 20th is Ear Community’s 13th Birthday!

TODAY IS EAR COMMUNITY’S 13TH BIRTHDAY!
Ear Community's 13th birthday and little girl in image with balloonsThirteen beautiful years of paving the way for Microtia and Atresia families, advocacy and awareness and so much more! On May 20th, 2010, I sat down at my laptop and decided to make a difference in the world by helping other families just like ours. We’ve come a long way since that first day of starting the Microtia and Atresia Support Group on Facebook!

Since being founded, we’ve hosted over 125 events in multiple countries, donated over 155 hearing devices, awarded 21 college scholarships, championed genetics research and found answers for microtia, inspired Federal legislation to be introduced known as Ally’s Act, collaborated with biotherapeutic companies and the FDA on research for 3D printed regenerated ears, improved general awareness about our rare cause, established National Microtia and Atresia Awareness Day along with legislation being introduced for November 9th, our website alone has helped hundreds of thousands of people all over the world and so much more!

Thank you to all of the amazing families, friends, sponsors, medical professionals and community members who have embraced our organization and supported us and our mission! It means the world to our little amazing organization!

Happy Birthday Ear Community! You are my third child that I will always love just as much as my two beautiful daughters, Hailey and Ally!
❤️👂 If you enjoy supporting nonprofits, consider giving back to the Ear Community Organization helping us continue our mission to help the microtia and aural atresia community.
– Melissa Tumblin
Founder of Ear Community
www.EarCommunity.org

The CARE Team Study presents at the American Cleft Palate Association’s 80th Annual Meeting

During the first week of May, the CARE Study Research Team attended the ACPA, American Cleft Palate Association, conference in Raleigh, North Carolina! Our CARE Team has been working on our grant project for the past four years and was finally able to come together in person! Our research team did an amazing job at the conference presenting nearly 20 total presentations, including presenting during the poster session. Our team’s presentations included feeding techniques to what the caregiver’s concerns are as well as surgical options from medical providers. We also enjoyed visiting the Dental School at Chapel Hill where we had an all day meeting!

The CARE Team is comprised of a interdisciplinary group of more than 20 members from 7 countries including members who are advocates, researchers, and healthcare providers. Our team works out of two primary sites – Seattle Children’s Research Institute and the University of Bristol, West England in the UK. Our research team also includes a number of subcommittees and an Advisory Council as well. Ear Community is proud to represent the microtia and atresia community during this grant project! ❤️

Our goal is to serve the craniofacial microsomia, microtia and atresia community by improving well being and to make a lasting difference to the craniofacial microsomia journey both now and in the future, including creating a registry and improving communication for care throughout the health care system.

Ally, Melissa Tumblin’s daughter, was one of the many children highlighted during our team’s presentations as well as promoting awareness about the Ear Community as one of the nonprofits serving the microtia and atreisa and craniofacial microsomia community. During our visit to Raleigh, our CARE Team hosted a community night where we enjoyed having Dr. Shannon Culbertson and Chris Bowman join us, both members of the Ear Community Organization. ❤️👂 Our research team includes the following members:  Dr. Carrie Heike, Dr. Ameilia Drake, Dr. Kelley Evans, Dr. Craig Birgfeld, Dr. Maarten Koudstaal, Dr. Christy McKinney, Dr. Leanne Magee, Dr. Nicola Stock, Dr. Alessia Johns, Dr. Jade Parnell, Dr. Canice Crerand, Dr. Kristin Billaud Feragen, Bruna Costa, Laura Stueckle, Kristen Daniels, Angela Mills, Albert Hsu, Erik Stuhaug, Zach Karpen, Amy Schefer and Melissa Tumblin. To learn more about our work, please click here.

While at the American Cleft Palate Association conference, we were fortunate enough to meet some pretty amazing people! – Advocates and partner nonprofit organizations as well as getting the chance to catch up with some amazing medical professionals that Ear Community has gotten to know over the years! ❤️ The ACPA really shines a light on craniofacial and cleft challenges along with many rare causes. It was very educational and heartwarming at the same time – from hearing key note speaker presentations to meeting other parent advocates and individuals stepping up to make a difference, together, while promoting advocacy and awareness about the many syndromes that affect our beautiful children and loved ones.

Melissa Tumblin of the Ear Community Organization had the privilege off meeting the beautiful women behind the MyFace Organization and CCA Kids! It was an absolute honor meeting Stephanie Paul, Dina Zuckerbuerg and Sandy Gilbert from MyFace and Erica Klauber from CCA Kids, the Chidren’s Craniofacial Association! Melissa also had the opportunity to finally meet Adam Levy, the Executive Director of the American Cleft Palate Association, including Engagement Manager, Erin Brenneman! It was also wonderful to finally meet Dr. Amelia Drake from Chapel Hill and Roger Rickard of VoicesInAdvocacy who has been incredibly supportive in advocating for important pieces of legislation like Ally’s Act, H.R. 2439/ S. 1135 that matter to the communities we serve! A special thank you to the ACPA for sharing about Ally’s Act, H.R. 2439 & S. 1135 during the opening reception and throughout the entire conference! It was also great to finally meet the members of the ACPA Advocacy Board during our meeting!

A bonus surprise to see Dr. Siva Chinnadurai, Dr. Noel Jabbour, Dr. Steven Goudy (Vice President Elect for the ACPA), Dr. Michael Discolo and Dr. Michael Golinko at the ACPA! A special thank you to Dr. Jabbour for mentioning Ear Community during his presentation as his go to resource for microtia and atresia for families! Thank you for always sharing about Ear Community with your microtia and atresia patients! ❤️

Here are some great moments from last week!
Thank you,

Melissa Tumblin
Founder – Executive Director
Ear Community

Eddie receives the gift of hearing during Better Hearing & Speech Month thanks to Oticon Medical & Ear Community

Young man with microtia and aural atresia

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

May 3rd is Bone Anchored Awareness Day!

Bone Anchored Awareness Day is coming up on May 3rd! Also known as “good vibrations day”!

Bone Anchored Awareness Day is a day that our community recognizes bone conduction technology – the very technology that our community members benefit from in regards to the option for restoring conductive hearing loss, among other types of hearing loss. The May 3 date was chosen deliberately because it is the birthday of Per-Ingvar Brånemark. Brånemark, a Swedish physician and research professor who is known as the father of osseointegration and the godfather of bone anchored hearing, because his discoveries enabled the development of today’s bone conduction hearing devices.

May 3rd is meant to celebrate all of the children and adults who have benefited from this hearing restoration treatment —regardless of brand—by providing them with a day to talk about their experiences living with bone anchored hearing devices. Today, more than 250,000 people from all over the globe use some form of bone conduction hearing device.
May is also Better Hearing and Speech Month! ❤️👂

We look forward to celebrating Bone Anchored Awareness Day with everyone and recognizing the month of May by embracing the Deaf and Hard of Hearing Community!

Don’t forget to advocate for Ally’s Act, H.R. 2439 and S. 1135, a National level bill that would ensure that private insurers cover bone anchored hearing aids and cochlear implants for children and adults from birth to age 65! Here’s a message from Ally Tumblin, whom Ally’s Act is inspired by:

Thank you!
Ear Community
#betterhearingandspeechmonth
#boneanchoredhearing  #goodvibrations

Ally’s Act, H.R. 2439 and S. 1135 have been reintroduced – here’s how to advocate for these bills!

“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 Microtia and Atresia Event Schedule for 2023

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

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