Archives for March 2024

On January 31, 2024, the Ear Community Organization was awarded the Charlie F. Cronheim Memorial Grant, by Reconstruct Together – a nonprofit organization that aims to sponsor established humanitarian missions in need of funding that serve the reconstructive needs of patients in communities around the world. Reconstruct Together’s Board of Directors honored Ear Community for the work the organization does for the microtia and aural atresia community. “Our organization is proud to be a Charlie F. Cronheim Memorial Grant Recipient,” says Melissa Tumblin, Founder of Ear Community. I have had the pleasure of knowing Dr. Angelo Leto-Barone, President and Founder of Reconstruct Together, for the past eight years while working together to help patients in the microtia and atresia community. Dr. Leto-Barone is a wonderful plastic surgeon and friend who has dedicated his life to helping patients in need of microtia repair, cleft lip and palate repair and more.”

Thank you to Reconstruct Together for offering support to other advocate organizations and medical professionals in our community who are in need and share the same vision! Many of the communities like the microtia and atresia community are underserved communities needing additional help whenever possible. Thank you for helping give back to the community and by helping change people’s lives! Reconstruct Together’s grant is appreciated more than you know and will help many in the microtia and atresia community go on to live better quality lives!

To learn more about Reconstruct Together’s organization and mission, click here.

Here is a lovely video Reconstruct Together made when honoring our Ear Community Organization and the work we have done for the microtia and atresia community:
https://www.youtube.com/watch?v=CznyIPfUuO0

Here is more on Ear Community’s work and mission.

Again, Ear Community is honored to be a grant recipient! Thank you to the Board of Directors at Reconstruct Together for selecting our organization to help give back to and support!
Melissa Tumblin
Founder – Executive Director
EarCommunity

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 Orlando, Florida/ Fullerton, California/ Calgary, Canada/ Edina, Minnesota/ Broomfield, Colorado/ New Orleans, Louisiana and Laval, Quebec 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.

Ear Community Texas microtia and atresia picnic

Event locations for 2024

June 1st – Orlando, Florida (in collaboration with Nemours Children’s Health)
June 22nd – Fullerton, California (in collaboration with Dr. Tahiri Plastic Surgery)
June 22nd – Calgary, Canada
June 29th – Edina, Minnesota (in collaboration with Children’s Minnesota Hospital)
July 13th – Broomfield, Colorado
July 20th – New Orleans, Louisiana
July 27th – Laval, Quebec Canada
* To RSVP, send an email to Caitlin at:  CaitlinEarCommunity@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

A special thank you to the Blue Chip Foundation, The William, Jeff and Jennifer Gross Family Foundation, the Omnium Foundation, the Emily Hall Tremaine Foundation and the Every Kid A King Foundation for helping make our special days possible and for helping provide the much needed support to our organization it needs on many levels!

Ear Community’s 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 more than a 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 without the help of public contributors. 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 the past eight years, Ear Community has been collaborating with Auregen Biotherapeutics for an ear of the future that would help children and adults born with microtia and atresia. Last fall, Auregen began clinical trials on 3D printed regenerated ears that would help individuals born with unilateral microtia.

Auregen Bio is actively enrolling individuals who have unilateral microtia for the opportunity to have a 3D printed regenerated ear created! This is an ear made from your own ear’s cellular material, resulting in an ear that would be a living ear offering more flexibility just like the other existing non-microtic atretic ear. Ages for enrollment are from 12 to 29 years of age. If interested, please reach out via email at: ClinTrials@Auregen.bio

Clinical trials are accepting Spanish and English speaking families here in the US, but welcome individuals and families from any country to participate. Auregen Biotherapeutics will also be a part of Ear Community’s picnics taking place this summer across the US and Canada.

Thank you,
Melissa Tumblin
Founder – Executive Director
Ear Community

We want Ally’s Act, H.R. 2439 and S. 1135 pass

WANT BONE ANCHORED HEARING AIDS and COCHLEAR IMPLANTS COVERED BY PRIVATE INSURANCE?

HERE’S HOW YOU CAN HELP ADVOCATE FOR ALLY’S ACT, H.R. 2439 and S. 1135 TO PASS!

Are you tired of private insurance companies denying coverage for Osseointegrated Devices/BAHA or Cochlear Implants? Are you tired of insurance companies dictating who gets to hear and who does not? Then, help advocate for Ally’s Act, H.R. 2439 and S. 1135 to pass!

Private insurers should not have the authority to override medical necessity when our doctors state that bone anchored hearing devices help our loved ones hear! It is incredibly difficult to get legislation in place to change the law, but we did it with Ally’s Act! Ally Tumblin is the child who inspired this bill after seeing how many people in our community are denied these specific hearing devices. Please help us advocate to help pass Ally’s Act into law!

We need everyone from our community to reach out to the offices on these attachments, especially your own Congressman and Senators. Write a personal letter with your child’s picture and say why Ally’s Act needs to pass and become the law! Please send the 1-pager and list of endorsers for Ally’s Act with your letter! (see below attachments)

Helpful information about this piece of legislation can be found on Ear Community’s website under the Ally’s Act Menu tab or here!
Help us pass Ally’s Act, H.R. 2439 and S. 1135!
Thank you!
Melissa Tumblin
Founder – Executive Director
Ear Community
EarCommunity.org

Joshua Shrader

February 5, 2024
Our Ear Community Organization would like to welcome our newest Board of Director Member, Joshua Shrader! Joshua and his family will also be hosting our 2025 Ear Community Microtia and Atresia picnic in Virginia!

Please give Joshua a warm welcome!
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Hi, my name is Joshua Shrader.
I am 42 years old and was born with microtia and atresia of the right ear and hemi-facial microsomia (also known as Craniofacial Microsomia). I first learned of Ear Community in 2020, and am so thrilled this resource exists. The only intervention I have had is complete upper and lower jaw reconstruction when I was 17 years old. I was born and raised in Richmond, VA, where I still call home today. I graduated from Bridgewater College in 2003, where I played baseball as a four-year starting pitcher. Since, I have spent my entire career in various functions in Finance & Banking. My beautiful wife, Emily, and I have three wonderful children, Landon, James and Ellie Grace. My hobbies include saltwater in-shore fishing, volleyball and golf.

I am super excited to now have the opportunity to get more involved as a Board Member with Ear Community!
– Joshua Shrader

We are very excited to have Joshua join our Board of Directors for our organization and we look forward to other members in our community being able to reach out to Joshua as he is a wonderful mentor and role model for our community!

Everyone who is a part of Ear Community’s Board is either a parent of a child born with microtia and atresia or has microtia and atresia themself. Many of our graphic designers who help Ear Community also have children born with microtia and atresia or have microtia and atresia themself. Even our organization’s attorneys have children that were born with microtia and atresia.

We love our community and and we believe in including as many members from our community to be a special part of our organization when they can!
Thank you.
Melissa Tumblin
Founder – Executive Director
Ear Community
www.EarCommunity.org

Ear Community recognized as a top Great Nonprofit for 2023

The Ear Community Organization is proud to be recognized as one of the GreatNonprofits of 2023! Ear Community has been a recognized Great Nonprofit since 2016 and we are proud to continue helping make such an amazing impact for the Microtia and Atresia Community for nearly 14 years!
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For Immediate Release:
November 20, 2023

Ear Community NAMED “2023 TOP-RATED NONPROFIT” by GreatNonprofits

Award based on Community Recommendations

Broomfield, CO November 20, 2023 –Ear Community announced today it has been named a “2023 Top-Rated Nonprofit” by GreatNonprofits, the leading website for community recommendations of charities and nonprofits.

Ear Community serves the Microtia and Aural Atresia Community by providing education and promoting awareness across the United States and in other countries, resulting in bringing our community together through organized events, donating bone anchored hearing devices to those in need, awarding college scholarships, genetic research and advocating for what our community needs, including legislation and advocacy.

“We are honored to be named a 2023 Top-Rated Nonprofit,” says Melissa Tumblin, Founder and Executive Director of Ear Community. We are proud of our accomplishments this year, including donating (7) bone anchored hearing devices alone, hosting (9) events, awarding (1) college scholarship and championing Ally’s Act, H.R. 2439/S. 1135 – a National level bill that would ensure private insurance coverage for every state helping children and adults have better access to bone anchored hearing aids and cochlear implant from birth to age 64, including the services, surgeries and maintenance that go along with having these implantable hearing device systems.

The Top-Rated Nonprofit Award is based on the rating and number of reviews that Ear Community received from volunteers, donors and aid recipients. “It is an amazing organization run by an incredible human (Melissa Tumblin), who is devoting her life to children and adults born with Microtia as well as hearing loss. Her organization plays a major role in helping families with new information and connecting them with each other. Ear Community is a shining example of an organization that goes above and beyond to transform the lives of children born without ears and those facing hearing loss. Their innovative approach, compassionate team, and unwavering dedication to empowering children are truly commendable. I wholeheartedly recommend supporting this non-profit organization, as they are making a significant difference in the lives of these extraordinary children and their families”. – Dr. Youssef Tahiri, Beverly Hills, California (7/2023).

“Ear Community is a great example of a nonprofit making a real difference in their community,” said Shari Tishman, Managing Director of GreatNonprofits, “Their award is well-deserved recognition not only of their work, but the tremendous support they receive, as shown by the many outstanding reviews they have received from people who have direct experience working with Ear Community”.

GreatNonprofits is the largest donation website for nonprofits and where people share stories about their personal experiences on more than 1.8 million charities and nonprofits. The GreatNonprofits Top-Rated Awards are the only awards for nonprofits determined by those who have direct experience with the charities – as donors, volunteers and recipients of aid.

The complete list of 2023 Top Rated Nonprofits can be found at: https://greatnonprofits.org/awards/browse/Campaign:61/Issue:All

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About Ear Community
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.

About GreatNonprofits
GreatNonprofits is the leading platform for donors to find stories and ratings of nonprofits. By applying the power of crowdsourcing to the world of nonprofits provides over 500,000 stories and reviews for more than 1.8M nonprofits influencing 30 million donation decisions a year. GreatNonprofits has received coverage in the Economist, Wall Street Journal, Los Angeles Times and Chronicle of Philanthropy, and has been personally endorsed by philanthropist Bill Gates. The organization is led by a team of nonprofit, business, product, and technology professionals. Visit www.greatnonprofits.org for more information.

Media Contacts
Melissa Tumblin
Founder, Executive Director
Ear Community
E-mail:  EarCommunity@gmail.com
Ph:  303-646-7126

Karen Dayan
Chief Marketing Officer, Great Nonprofits
karen@greatnonprofits.org

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If you enjoy giving back to nonprofits, please consider showing Ear Community your support by making a donation to say “thanks” during the giving season of this year. Thank you so much for your continued support that allows our organization to continue doing the good it does and for the opportunity to give back to the Microtia and Atresia community! Your support means the world to our organization and community and is appreciated more than you know!
www.EarCommunity.org/donate

Thank you for supporting our rare cause and for liking what Ear Community does to give back to the Microtia and Atresia community!
Melissa Tumblin
Founder – Executive Director
Ear Community

Melissa Tumblin of the Ear Community Organization honored with the Legacy Award from the Give An Ear Foundation.

November 20, 2023
Thank you to the Give An Ear Foundation for honoring me with the Legacy Award for the Microtia community of South Africa this weekend!

Two of the very first picnics Ear Community hosted years ago helped bring our microtia families together in Johannesburg when there was no help or information for the microtia and atresia community! Ear Community also donated the first three Ponto Bone Anchored Hearing Aids with the help of Oticon Medical to the Give An Ear Foundation to help children with hearing loss in Johannesburg.

Thank you to my friend, Viola, for honoring me this weekend within the South African community through the Give an Ear Foundation she has created to help the microtia community and for carrying on the torch in South Africa!

Thank you!
Melissa Tumblin
Founder – Executive Director
Ear Community
www.EarCommunity.org

Imogene Gilbert, bilateral atresia, 4 year old recipient of (2) Oticon Medical Ponto 5 Minis, November of 2023, Minnesota.

November 7, 2023
Ear Community is proud to help another child hear & obtain two bone anchored hearing devices during our week of awareness on November 7th!

Meet Imogene!
Imogene is a sweet 4 year old little girl from Minnesota! Now that Imogene is at an age where she can communicate better, she began turning the TV up to max volume & saying she can’t hear! Her mom, Amanda, became concerned & made an appointment with her pediatrician. After waiting for months to meet with an audiologist, Imogene was able to try on a bone anchored hearing aid. Her face lit up & she could hear everyone! Finally, during an appointment w/Imogene’s ENT, they discovered she wasn’t hearing because she was missing both ear canals according to her CT! Imagine how shocking this was to Imogene’s parents, hearing this for the first time & realizing their sweet daughter hasn’t been hearing for the first four years of her life as they imagined she was!

Once receiving two loaner bone anchored hearing devices from their audiologist, Imogene & her family were amazed how well she could hear! Imogene repeated every word the audiologist said & even exclaimed, “I can hear myself talking”! When their audiologist reached out to insurance for two Oticon Medical Pontos, again – to their surprise, their insurance (BCBS) denied Imogene both hearing devices! Amanda & her husband were shocked to discover their insurance plan excluded coverage for bone conductive hearing devices! Their insurer would pay for in-the-ear hearing aids & cochlear implants, but not a bone anchored hearing device! Imogene’s family was left floored! Thinking – “How can they possibly deny a four year old the ability to hear because her anatomy that causes hearing loss requires a different kind of hearing aid?”

Thankfully, Amanda & Imogene & their family found the Ear Community Organization which happily donated two NEW Ponto 5 Mini bone anchored hearing devices thanks to Oticon Medical! Imogene’s audiologist, Dr. Cynthia Hogan of the Mayo Clinic, fitted Imogene’s two new Pontos too!

Imogene continues to shine & thrive! Thank you to Oticon Medical for giving the gift of hearing through Ear Community!

Ally’s Act, H.R. 2439/S. 1135 must pass! We are asking the community and all advocates to please champion Ally’s Act!
Thank you.
Melissa Tumblin
Founder – Executive Director
Ear Community
www.EarCommunity.org

Jaytee Savage, Oticon Medical Ponto recipient and Pax’s Ear Fund recipient, September 1, 2023, Colorado.

September 1, 2023
Ear Community had the opportunity to help another community member hear with a bone anchored hearing device after being denied by his insurance provider.

Meet Jaytee! Jaytee was born w/bilateral microtia & atresia. Jaytee has struggled for the past 30 years with hearing loss in both of her ears, even though she reads lips well. However, she just could not continue struggling to hear everyday! On Friday, September 1st, Jaytee received the gift of hearing with a NEW Ponto 5 Superpower bone anchored hearing device from the Ear Community Organization, thanks to Oticon Medical ! Thank you to Jaytee’s audiologist, Dr. Jordan Belanger of the Marion Downs Center, for fitting & programming Jaytee’s new Ponto 5SP! Jaytee, we are so happy that you can finally hear so much better!

Jaytee is excited to begin a new career at the diversity & inclusion office for students w/disabilities at Metro State University! We know you will be able to help so many students feel included now, especially hearing your best with your Ponto! #BecauseSoundMatters

Over the years, Ear Community has partnered w/local hearing clinics when helping give the gift of hearing. It was great to collaborate again with the Marion Downs Center to help Jaytee w/his fitting/programming. It was especially nice to see a dear friend of mine – Dr. Sandra Abbott Gabbard, CEO & President of the Marion Down’s Center, during Jaytee’s appointment. Sandra is an amazing audiologist & advocate, she is a legend & I am proud to know her & her dedicated work to individuals w/hearing loss!

The state of Colorado is known for being a high advocacy state when it comes to hearing loss. Marion Downs was a distinguished professor at the University of Colorado School of Medicine. She devoted her professional life to promoting early identification of hearing loss in newborns, infants, & young children. It is because of her that in 1963, she pioneered the 1st national infant hearing screening program in Denver, CO! Her success has resulted in a widespread national program, which makes the screening of newborn hearing a functioning preventative program in more than 40 states!

Thank you!
Melissa Tumblin
Founder – Executive Director
Ear Community
www.EarCommunity.org