Archives for May 2023

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

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