Microtia and Atresia Support Group

Microtia and Atresia Support Group The Microtia & Atresia Support Group is for individuals born w/Microtia & Atresia & is part of a nonprofit organization called Ear Community.

Our website is:
www.EarCommunity.org and our Federal Tax ID # is: 46-0923897. Founded on May 20th, 2010. Ear Community is a warm and supportive community for those who have any or all of the following: varying degrees of hearing loss, Microtia, Atresia, Hemifacial Microsomia (HFM), Treacher Collins, or Goldenhar Syndrome. You will learn more about parent advocacy, self advocacy, and patient advoca

Our website is:
www.EarCommunity.org and our Federal Tax ID # is: 46-0923897. Founded on May 20th, 2010. Ear Community is a warm and supportive community for those who have any or all of the following: varying degrees of hearing loss, Microtia, Atresia, Hemifacial Microsomia (HFM), Treacher Collins, or Goldenhar Syndrome. You will learn more about parent advocacy, self advocacy, and patient advoca

Operating as usual

September is Deaf Awareness Month! Never let hearing loss define you and embrace who you are. Options are always okay - ...
09/10/2021

September is Deaf Awareness Month!

Never let hearing loss define you and embrace who you are. Options are always okay - find the one that is best for you and helps you find the most happiness.
🦻❤️👂

The Ear Community Organization
www.EarCommunity.org

September is Deaf Awareness Month!

Never let hearing loss define you and embrace who you are. Options are always okay - find the one that is best for you and helps you find the most happiness.
🦻❤️👂

The Ear Community Organization
www.EarCommunity.org

Don't forget to RSVP to our upcoming two in person Ear Community Microtia and Atresia events! Our events are FREE and al...
09/08/2021

Don't forget to RSVP to our upcoming two in person Ear Community Microtia and Atresia events! Our events are FREE and always take place outside.

Saturday, October 2nd:
Richmond, Virginia
Mesa, Arizona

We are excited and looking forward to seeing our community members! An individual lunch will be provided and we have some fun and safe entertainment planned. We'll learn about all of our options for Microtia and Atresia as well. We are looking forward to seeing everyone soon!

A special thank you to our sponsors for helping make our Ear Community events possible:
Platinum Sponsor - Cochlear Americas *Baha 6 Max and Osia
Gold Sponsor - Oticon Medical *Ponto 3SP, Ponto 4 & Ponto 5 mini
Silver Sponsor - MED-EL, *ADHEAR & BONEBRIDGE

We are excited to make these two in person events possible for our community members.
Thank you!
Ear Community
https://earcommunity.org/2021-picnics-and-events/

Cochlear Americas
Oticon Medical
MED-EL USA
Paul Tanner, CCA - Realistic Prostheses

09/07/2021

Our support group member, Ana, has the following question for families living in Pennsylvania:

"Hi my name is Ana and I live in New Jersey with my family. My son was born with microtia artesia. He had surgery three years ago at the Children’s Hospital of Philadelphia. They used Medpor for the reconstruction of his ear. As of right now, my insurance, United Healthcare Community Plan, is no longer covering treatment at CHOPS. I’m really desperate to find doctor in the surrounding area. My son’s ear has an infection and we don’t know where to take him. If you have any information/recommendations, please send it to me. Thank you for your help."

Thank you,
Melissa Tumblin
Ear Community

Yesterday, I had the opportunity to meet with this little beauty and her mama! This is sweet little Aubrey and her mama,...
09/03/2021

Yesterday, I had the opportunity to meet with this little beauty and her mama! This is sweet little Aubrey and her mama, Jennifer. Aubrey was born with Microtia and Atresia of her right ear. Aubrey and Jennifer had the chance to meet while traveling from Texas to visit family here in Colorado. It's always nice being able to talk with someone in the same situation. These two are now well informed of all of their options for Microtia and Atresia as they begin their journey in our community. Aubrey is beautiful and perfect in every way and she lights up any room with her smile and sweet giggles! ❤️

I loved meeting with these two and sure miss seeing so many of our Microtia and Atresia families! Hoping to see everyone next year in person at our events! ❤️👂

- Melissa Tumblin
Founder - Executive Director
Ear Community
www.EarCommunity.org

09/03/2021

Our support group member Jessica Gardner is seeking advice

“Hi. I have a daughter who is now 13 and has some development delays. I never did any therapy because I thought, while in school, it was due to her not being able to hear the teacher well. She does have an iep in school and is helped but I feel it hasn't helped enough. She is a moral sound pre teen and can do homework but when it comes to certain areas I feel as her mom I can do more to help her be on a better track with school. My question is is this something that is common with microtia and if so what recommendations could someone give for a mom who sees her daughter struggle and wants to help. I appreciate all help. Thank you.”

Kasi, admin

Happy Birthday to Ally from some of the Oticon Medical Denmark/US team! ❤"Happy Birthday Ally🎂💐🇩🇰🇺🇸 We are gathered in C...
09/02/2021

Happy Birthday to Ally from some of the Oticon Medical Denmark/US team! ❤

"Happy Birthday Ally🎂💐🇩🇰🇺🇸 We are gathered in Copenhagen and just wanted to congratulate you. Big hugs to the whole Tumblin family😘😘 "

Oticon Medical
Congressman Joe Neguse
Congressman Mike Thompson
David McKinley
Senator Shelley Moore Capito
U.S. Senator Elizabeth Warren
Senator Michael Bennet
John W. Hickenlooper
Rep. Jason Crow
Congressman Ed Perlmutter

Happy Birthday to Ally from some of the Oticon Medical Denmark/US team! ❤

"Happy Birthday Ally🎂💐🇩🇰🇺🇸 We are gathered in Copenhagen and just wanted to congratulate you. Big hugs to the whole Tumblin family😘😘 "

Oticon Medical
Congressman Joe Neguse
Congressman Mike Thompson
David McKinley
Senator Shelley Moore Capito
U.S. Senator Elizabeth Warren
Senator Michael Bennet
John W. Hickenlooper
Rep. Jason Crow
Congressman Ed Perlmutter

Happy Birthday, Ally! Ally was born 12 years ago and is the reason why the Ear Community Organization was founded. She i...
09/02/2021

Happy Birthday, Ally!

Ally was born 12 years ago and is the reason why the Ear Community Organization was founded. She is an amazing sweet little girl who we are SO proud of!

Our family has learned more from this little girl than we could have ever imagined. Thank you for bringing the world together in our Microtia and Atresia community since you were born!

We love you more than words could ever say! ❤🎉🧁🎁🎈❤
The Tumblin Family - Mommy, Daddy and Hailey
www.EarCommunity.org

Meet Willard! Willard is Ear Community's latest Bone Anchored Hearing Device recipient! Willard is 63 years old and live...
08/30/2021
Ear Community and Cochlear Americas help Georgia man receive the gift of hearing

Meet Willard!
Willard is Ear Community's latest Bone Anchored Hearing Device recipient! Willard is 63 years old and lives in Savannah, Georgia, born with bilateral Microtia and Atresia. Thanks to his audiologist, Dr. Casey Allen and to Cochlear Americas, Willard was able to receive the gift of hearing through our Ear Community Organization!

Thank you to Dr. Allen for donating her time and services to fit and program Willard's new Baha 6 Max and for helping him fill out his application to our Ear Community Organization! A special thank you to Cochlear Americas for collaborating with Ear Community to help give back to the community by donating a Baha 6 Max! Ear Community is grateful to Cochlear Americas and is proud to be a collaborative partner since 2011! Thank you for partnering with Ear Community to help another member of the D/HH community receive the gift of hearing! ❤️🦻

For Willard's full story, please click on the following link: https://earcommunity.org/ear-community-and-cochlear-americas-help-georgia-man-receive-the-gift-of-hearing/668165/

The Ear Community Organization is proud to be a part of giving back to help Willard hear!
Congratulations, Willard! ❤️
Ear Community

Meet Willard! Willard was born with bilateral Microtia and Atresia and lives in Savannah, Georgia. Willard is 63 years old and has struggled all of his life with hearing loss. After visiting with a…

This weekend, Ear Community (Ally and I) were invited to come together with the Hearing Loss Association of America - Bo...
08/30/2021

This weekend, Ear Community (Ally and I) were invited to come together with the Hearing Loss Association of America - Boulder Chapter here in Colorado where we were able to come together with members of the D/HH community. We shared stories and talked about common struggles. We also talked about how Ally's Act will help so many in our community who wear Bone Anchored Hearing Aids and Cochlear Implants.

Thank you to Terri Aggeler Shirley for inviting us and for organizing yesterday's event! It was great to see people in person and individuals in a similar to same situation. ❤️
Melissa Tumblin
Ear Community

Hearing Loss Association of America (Official Page)

08/27/2021

Erika has another question for our community: "I have another question...Does anyone have ideas for manager using the mask with one ear and the softband. I use a headband with 2 bottons for simulate the opening of the ear so the mask could be at the same level but, I haven't find a way to use the softband at the same time that it's comfy for my son. It's mandatory at school the use of the mask. And I'm breaking my head with ideas...Thanks in advance!"

Thanks,
Elia - Admin :)

08/27/2021

Jennifer asks: "Hi there! I’d like to ask the group how often parents tend to have BAHAs checked and adjusted for infants and young children. Our audiologist has an option for a flat fee for all adjustments for five years, which is worth it if you need to do that more than once. Our daughter is nine months old and just began wearing her BAHA.

Thanks!"

Thanks,
Elia - Admin :)

08/27/2021

Erika has a question hopefully some may be able answer: "Does anyone have had a child with CoVid19 that have experiece hearing loss?"

Thanks,
Elia - Admin :)

Our support group member, Delfina, wanted to share the following with everyone!"I wanted to share the DIY face shield I ...
08/26/2021

Our support group member, Delfina, wanted to share the following with everyone!

"I wanted to share the DIY face shield I made for my daughter’s BAHA ☺️🤟🏼"

Thank you so much, Delfina! ❤
Melissa Tumblin
Ear Community

Last week, I had the opportunity to catch up with these two beautiful ladies from Congressman Joe Neguse's office! Meet ...
08/24/2021

Last week, I had the opportunity to catch up with these two beautiful ladies from Congressman Joe Neguse's office! Meet Legislative Assistants Abbie Callahan (left) and Katie Wallace (middle) who have been working hard on Ally's Act, H.R. 477! Katie wrote our bill and Abbie manages our bill. Abbie is from the Fort Collins, CO area and Katie is from the Lafayette, CO area, two of the many districts that Congressman Neguse represents. Both have worked directly with Congressman Neguse in his Washington, D.C. office.

We are very excited about Ally's Act passing! There are a lot of passionate people behind our bill who want to make sure our children and adults have the opportunity to hear and thrive when needing bone anchored hearing aids and cochlear implants!

Thank you to Congressman Joe Neguse for listening to Ally and myself when we met directly with him in 2019, explaining how so many individuals are denied the opportunity to hear by their private insurers. We are grateful for everything Congressman Neguse and staff are doing to help Ally's Act pass and are looking forward to a hearing for this bill!

Thank you,
Melissa Tumblin
Ear Community
https://earcommunity.org/about/allys-act-h-r-5485/

Last week, I had the opportunity to catch up with these two beautiful ladies from Congressman Joe Neguse's office! Meet Legislative Assistants Abbie Callahan (left) and Katie Wallace (middle) who have been working hard on Ally's Act, H.R. 477! Katie wrote our bill and Abbie manages our bill. Abbie is from the Fort Collins, CO area and Katie is from the Lafayette, CO area, two of the many districts that Congressman Neguse represents. Both have worked directly with Congressman Neguse in his Washington, D.C. office.

We are very excited about Ally's Act passing! There are a lot of passionate people behind our bill who want to make sure our children and adults have the opportunity to hear and thrive when needing bone anchored hearing aids and cochlear implants!

Thank you to Congressman Joe Neguse for listening to Ally and myself when we met directly with him in 2019, explaining how so many individuals are denied the opportunity to hear by their private insurers. We are grateful for everything Congressman Neguse and staff are doing to help Ally's Act pass and are looking forward to a hearing for this bill!

Thank you,
Melissa Tumblin
Ear Community
https://earcommunity.org/about/allys-act-h-r-5485/

Hi Microtia and Atresia community members!Our Ear Community Organization just needs (3) more testimonials to maintain ou...
08/24/2021
Write a Review for Ear Community (Broomfield, CO)

Hi Microtia and Atresia community members!

Our Ear Community Organization just needs (3) more testimonials to maintain our 2021 Great Nonprofits certificate. All you have to do is provide a brief testimonial at the following link: https://greatnonprofits.org/reviews/write/ear-community

Thank you so much!
Melissa Tumblin
Founder - Ear Community

Submit your rating and write a review for Ear Community. Share your experience and help others learn about this Broomfield nonprofit organization!

08/24/2021

Our support group member, Rosanna, has the following question for everyone:

"Can anyone recommend a doctor in NYC who does atresia repair. The original surgery was done with Dr. Robert Jahrsdoerfer who passed away. Any recommendations would be greatly appreciated."

Thank you!
Melissa Tumblin
Ear Community

Ear Community proudly awards it's 16th college scholarship!Meet Owen Poling, a Chinese-American from Lancaster, Ohio! Ow...
08/23/2021
Ear Community proudly awards its 16th college scholarship

Ear Community proudly awards it's 16th college scholarship!

Meet Owen Poling, a Chinese-American from Lancaster, Ohio! Owen graduated from Bloom-Carroll High School this past May and is looking forward to attending Albion College this fall in Michigan. Owen was born with Microtia and Atresia of his right ear. In Owen’s application letter, he spoke about growing up over the years and enduring stares from the public. He expressed how much the stares hurt him and how angry this made him – realizing that people thought that just by staring at his ear would do no harm to him.

However, accepting uniqueness and finding faith can help show you the way to being a stronger person! For more on Owen's story, please visit the link below:

https://earcommunity.org/ear-community-proudly-awards-its-16th-college-scholarship/668155/

We are so proud of Owen and we hope he does big things in genetics!
The Ear Community Organization
❤️👂❤️

Meet Owen Poling, a Chinese-American from Lancaster, Ohio! Owen graduated from Bloom-Carroll High School this past May and is looking forward to attending Albion College this fall in Michigan. Owen…

Over the past month, I have had the opportunity to meet up with some of our Ear Community sponsors. About a month ago, I...
08/23/2021

Over the past month, I have had the opportunity to meet up with some of our Ear Community sponsors.

About a month ago, I was able to meet up with our organization's contact, Keesha Pfeiffer from Cochlear Americas and just last week, I was able to meet up with our contact, Lynn Stephenson, from MED-EL! It has been so difficult not being able to travel and see our organization's sponsors or host our events, but it was great to meet up with Keesha and Lynn recently!

Thank you for the amazing support not only to our Ear Community Organization, but also to individuals with hearing loss throughout our community! These two have been working extra hard during COVID-19 and even with life's recent challenges here and there, they have been able to still go above and beyond helping so many! Both, Cochlear Americas and MED-EL implemented programs that helped audiologists and providers still mange to help work with their patients even virtually when needed and shipping hearing devices pre-programmed when needed. Thank you for knowing how important it is to keep hearing!

Thank you for the continued support even with current day challenges! Our community appreciates YOU!

Thank you!
Melissa Tumblin
Ear Community

Cochlear Americas
MED-EL USA

Join us for our in person Arizona Ear Community Microtia and Atresia picnic on Saturday, October 2nd!Location:  Mesa, Ar...
08/23/2021

Join us for our in person Arizona Ear Community Microtia and Atresia picnic on Saturday, October 2nd!

Location: Mesa, Arizona

Meet the Smith Family! Kristy, Pete, Olivia and Family have been very involved with our Ear Community Organization ever since sweet Olivia was born with one little ear! In addition Kristy being an Ear Community Board Member, she leads the HLAA Walk4Hearing team for Microtia families in Arizona each year, supporting both nonprofit organizations!

Our picnic is FREE with individual lunches and fun entertainment provided. We'll learn about the latest bone conduction hearing device technology and prosthetic ears. Families will have a chance to mingle, connect and maybe even make a new friend! Our event will be outdoors where everyone can socially distance as much as you would like.

A very special thank you to Ear Community's amazing sponsors:
Thank you to our Platinum Sponsor: Cochlear Americas
Thank you to our Gold Sponsor: Oticon Medical
Thank you to our Silver Sponsor: MED-EL

We're excited to see everyone on Saturday, October 2nd at our Arizona Ear Community event! If you would like to RSVP for this event, please send an e-mail to Melissa at: [email protected]

Thank you and see everyone soon!
The Ear Community Organization
www.EarCommunity.org

Cochlear Americas
Oticon Medical
MED-EL USA
Kristy Smith

08/20/2021

Our support group member, Brittany, needs some help with eyeglasses that will stay up with a little Microtia ear:

"🚨HELP🚨

My 9 yr old had a recent eye appointment and is now in need of glasses. He is unilateral, with only a small lobe, meaning glasses with “arms” won’t work. Because his head is also not uniform, single straps, like those found on shields, goggles, or even the BAHA, don’t stay in place. And on top of that, I’m struggling to find a place that even carries glasses with straps for kids, beyond athletic type goggles.

Does anyone else out there have experience with this? Are there glasses with a wider, almost split strap, that covers more of his head? Where can I turn? Is he too young for contacts?

I just wanna cry 😭 he’s so upset about getting glasses, the way they’ll look, the remarks at school, the thought of needing surgery to allow him to wear “regular” glasses. My heart crumbles every time I see the stress and worry on his little face."

Thank you!
Melissa Tumblin
Ear Community

Address

280 E. 1st Ave., P.O. Box 704
Broomfield, CO
80038

General information

Ear Community (www.EarCommunity.org) is a non profit organization that can help donate a new bone conductive sound processor/Baha/BAHS to those who can not simply afford to purchase one or who have been denied coverage by their insurance company and to award college scholarships to teens and young adults who have chosen to keep their little Microtia ears as not everyone wishes to have surgery. If funds are available, Ear Community may be able to help with reimbursement toward travel costs when planning for surgery. Ear Community also provides education, helpful resources, and options on our website to help you learn more about Microtia and Atresia. Ear Community also continues to host summer picnics helping bring Microtia/Atresia (and Goldenhar, Treacher Collins, and Hemifacial Microsomia) families together around the world. Ear Community is a 501c3 nonprofit charitable organization. Tax ID #: 46-0923897.

Products

Mission Statement: Promote educational and public awareness about Microtia and Atresia and hearing loss, in an unbiased manner, while promoting advocacy and connecting individuals in the same situation.

Ear Community is involved with research for Microtia and Atresia through grants with Harvard and Children's Hospital Seattle. Our website is an invaluable educational tool and helpful resource. Our organization brings families together at our annual events. We donate bone conduction hearing devices (Baha/BAHS/OID/BCHA to those children and adults who have Microtia and Atresia and who are in need or have economic hardship and have been denied hearing device coverage by their insurance provider. Our organization also awards college scholarships.

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Our Story

This is a nonprofit organization that has been developed as a network for those who have and know loved ones with the congenital deformity called Microtia and Atresia. Microtia is a congenital ear deformity that occurs when the ear does not fully develop during the first trimester. The Microtia and Atresia Support Group is a part of the Ear Community Organization, a 501c3 nonprofit organization. Here is an interview of Ear Community’s Founder, Melissa Tumblin, on why she founded the Ear Community Organization and a little bit about her experience about Microtia and Atresia: https://youtu.be/IbJjY0DssWo If you would like to make a donation to Ear Community, please visit: http://earcommunity.org/donate/ Federal Tax ID# 46-0923897 (for your tax deduction records)...you'll receive a thank you receipt upon making your donation electronically. If you require a specific letter for donation purposes, contact the Ear Community Organization via [email protected] If sending a check, please make your check out to Ear Community, Inc. and mail to: 280 E. 1st Ave. Unit 704 Broomfield, Colorado 80038 USA www.EarCommunity.org

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Comments

Hi my name is Ana and I live in New Jersey with my family. My son was born with microtia artesia. He had surgery three years ago at the Children’s Hospital of Philadelphia. They used Medpor for the reconstruction of his ear. As of right now, my insurance, United Healthcare Community Plan, is no longer covering treatment at CHOPS. I’m really desperate to find doctor in the surrounding area. My son’s ear has an infection and we don’t know where to take him. If you have any information/recommendations, please send it to me. Thank you for your help.
I wanted to share the DIY face shield I made for my daughter’s BAHA ☺️🤟🏼
Hi everyone, my daughter was born in 1996 with microtia atresia. She had both surgeries. Now 18 years later she is in need of repair surgery for the atresia. We live in NY and would prefer doing the surgery here. Dr Brent and Dr Jahrsdoerfer we’re the original team of doctors we used. Since then they have retired. I would appreciate all your suggestions. Thank you so much!
🚨HELP🚨 My 9 yr old had a recent eye appointment and is now in need of glasses. He is unilateral, with only a small lobe, meaning glasses with “arms” won’t work. Because his head is also not uniform, single straps, like those found on shields, goggles, or even the BAHA, don’t stay in place. And on top of that, I’m struggling to find a place that even carries glasses with straps for kids, beyond athletic type goggles. Does anyone else out there have experience with this? Are there glasses with a wider, almost split strap, that covers more of his head? Where can I turn? Is he too young for contacts? I just wanna cry 😭 he’s so upset about getting glasses, the way they’ll look, the remarks at school, the thought of needing surgery to allow him to wear “regular” glasses. My heart crumbles every time I see the stress and worry on his little face.
Hello all! I am wanting to build a handout for my 7 year old daughter's 2nd grade teachers with info about microtia and how they can help my unaided daughter with her one sided hearing loss and advocating for herself. What are some things you would include???
Hi! We just moved to Colorado and we need to buy winter hats for my unilateral microtia child. Any suggestions? Thanks!
Greetings! Does anyone know a good ENT in the Los Angeles area? My son had CAM surgery a few months ago. We saw one in Glendale recently but were not satisfied with his services.
Question where do you guys buy headbands for your Lil ones???
Hello 👋🏽 We are seriously considering the PIER surgery with Dr. Lewin. So far we’ve heard great experiences with the process and surgery. I was wondering if there was anyone who maybe had not such a great experience. This is by no means to disrespect anyone, we just want to make a well rounded decision and go into this knowing all sides. Feel free to PM me. Thanks in advance!
Did anyone do the 3D ear with Dr Lewin as well as opened the ear canal with Dr Roberson? Please contact me?
Hi all! Does anyone have pediatric audiology and speech pathologist recs for the Birmingham AL area? Thanks!
Has anyone had success getting Cigna to approve bone conductivity devices for their child in CO? Initially denied, but I see this is a CO mandate. I am wondering how they are rejecting coverage and if it's worth trying to appeal. Thank you!