Ear Community

This has been the most valuable source of information on a very rare genetic condition I have learned more here than I have from doctors or any other website. In addition, it has been an incredible source of encouragement and inspiration on a regular basis.

I was born with right sided microtia in 1955. There was no internet, no information, and certainly little to no communication. It was kept hidden under my long brown hair, along with my thoughts, feelings and insecurities.
Growing up was challenging as was sitting around a table with friends.
Fortunately, today there is this amazing group of people who are open and honest about their experiences and resources galore to help people navigate this lifestyle. This organization is unparalleled and can’t imagine it not being available today. Thanks to those who dedicate their time and inspiring stories to help those who come along.

We first became aware of the Ear Community in 2018 when our daughter, Amelia, was born with Microtia Atresia.

This organization has provided the support our family needed, information for us to be advocates as well as a platform to connect with other families within our community.

The Ear Community is a lifeline. It is a safe space for the Deaf and Hard of Hearing Community; and we are forever grateful that it exists.

When your child has a rare condition and not many people can help you, it was amazing to find this resource! Thank you so much for being so available and helpful when we needed someone to talk to.

The Ear Community has been a wonderful resource for our family. My now 6 year old daughter was born with right side microtia and atresia. Last week we were fortunate to attend our first Ear Community Picnic (virtually) and I just wanted to send a quick thank you to Melissa for organizing this event. I really didn't know what to expect and was blown away by all the information and guest speakers that joined. Such a wealth of information!

I know virtual events are a challenge too but Melissa and guests were so poised and very engaging!

I can't wait for more events in the future.

Ear community has absolutely been an essential part of spreading awareness and educating on bone anchored hearing devices. Often times it can be very intimidating and scary to approach this medical topic - there's a lot of unknowns for finding proper solutions. The resolution to this problem is Ear Community. The support this nonprofit gives is absolutely priceless, the abundance of helpful information and the center of just having someone to reach out to for a shoulder to cry on. I've been using this nonprofit for about 7 years, and learn something knew every single day when I see their updates and feed on my social media. These hearing devices are complex and rare, it's amazing to know that the Ear Community has my back in whatever questions I need answered from insurance, to the best ear doctors in town, to the personal benefits of wearing the hearing product. The Ear Community has and will continue to change so many lives. I highly recommend everything about this nonprofit. Words simply cannot properly define the positive impact Ear community has in the hard of hearing and deaf community. A HUGE thank you to Ear Community! It is THE best source of anything and everything about the BAHA.

My son,Tyndale, who is now 2 months old was born with Microtia/Atresia of the right ear. We had no idea of this condition prior to his birth. My midwife and my pediatrician were not familiar with Tyndale's diagnosis so upon doing my own research, I found the Ear Community. I posted a question on their Facebook page and Melissa immediately reached out to me and offered reassurance concerning my son's diagnosis. She also helped connect me with the Microtia/Atresia clinic at Vanderbilt University. This community has been so wonderful and helpful to our family. Thank you so much!!!

My daughter was born in February 2020. She was born with unilateral (right side) Microtia & Atresia. We spent the first year of her life feeling very lost on what her diagnosis meant and what is/isn’t best for her. We found Ear Community after what felt like a very disappointing doctor’s appointment, where we had lost our hope. Ear Community (Specifically Melissa) was a wealth of knowledge for us and gave us back the hope we needed for our sweet little girl. We cannot wait to become more involved with Ear Community and hopefully begin to make connections with other families that are on the same journey.

When our daughter was born, a failed hearing test allowed us to figure out she has an atresia in her left ear. Long story short, we left it alone until recently when we were referred to another ENT out of state. I had a friend suggest I search on Facebook for a support group for atresia since we were clearly struggling with what to do and happened across the Ear Community! I told them our story and she messaged me back some info, she even gave me her number and we talked for 45 minutes. I learned so much it was just unreal! They are so incredibly helpful and offer great insight as to what our kids are going through and it’s stuff that the drs we’ve seen had never told us which makes it that much more valuable. I was pretty much clueless to all the ins and outs of atresia other than little to no hearing from that ear and feel so much more knowledgeable about what’s going on with my daughter after talking with them. The advice given and opinions of the parents as well as the organization were so valuable and definitely made great points on all options, leaving you able to make informed decisions for your circumstances. Amazing! Amazing organization!

Ear Community is an essential part of the community that my son was born into and has been the most helpful resource for me as a parent. This organization is amazing!!

My daughter was born with Microtia and Atresia a this non profit has been so helpful and beneficial to my family. Wonderful resource!

When our daughter was born in the hospital with her “little ear” we learned was microtia and atresia, we were armed with little else than an iPad and the powers to search what her condition was and what it meant. One of the websites we came across was this organization that not only gave us a wealth of information but also gave us hope and a level of support. Within 24 hours of her birth and a visit from a pediatrician, we knew more than the pediatrician about the condition and it was thanks to this website. Since then, we have been followers of the website and the events and valuable information for children with hearing loss and their families as well as its community and the way we rally to support each other to troubleshoot or assure someone new being added to the community. We are so grateful for this resource.

Ear community gives us so much hope when everything seems so unclear and falling apart. We are from the Philippines. Our son was born with Bilateral Microtia and Atresia. As we search for answers with our son’s condition, we came across this organization Ear Community on Facebook and the Microtia and Atresia Support Group. As we go through their website, we read stories of hope and happiness as the children are aided through their help. It gave us a strong faith that our son could also share the same joy of hearing someday. As a parent the fear of unknown is what makes it so difficult. We don’t know who we can turn to. We thought that there’s no other way for our son’s condition already. It is just heartbreaking but it was through this community when we learned that our child will be able to hear us better. Thank you for keeping our spirits high. We found great comfort with this group. Thank you Ear Community! Thank you for being and playing a big part of our journey!

Our daughter was born with Microtia and Atresia 13 years ago. We were beyond lost, confused and alone. We were going through a really rough patch trying to help her through her first few years of life when we searched Facebook and stumbled across Ear Community. Ear Community has been a true blessing in our lives! Through this organization, we went to several picnics in various states and quickly fell in love with Melissa and Ally Tumblin (and family), the founders of Ear Community.

Ear Community has helped us and many others with advice, support and advocacy. Melissa has worked tirelessly to bring awareness to others...and has even gotten it's very own awareness day on November 9th!

The Ear Community Family holds a special place in our hearts and we are forever grateful for all of it!!

My son was born with microtia and Atresia and this group has been a great help with advice also with support in questions and with emotional support as well. I am thankful for this group!

My name is Brittany Doyle and I was born with Grade 3 Microtia. I had a total of five surgeries starting at a young age. Due to the location of my facial nerve, they were unable to create an opening. I came across Ear Community and was instantly welcomed into the group. It was such a relief to find others I could relate to and share my story with. I have enjoyed connecting with people and being able to help others !

Having a daughter born with Microtia-Atresia and unilateral hearing loss (and realizing not a lot of information is out there to help guide parents in a time of trying to navigate this condition) - the Ear Community not only provides a plethora of information on this subject and endless collected resources, but it has a loving mother with a mission to help us all facing the same challenges.

Melissa has been incredibly helpful, supportive and generous in guiding us in our path to learn about this world and to bring us up to speed, so we can make the best choices, and be the best advocates for our daughter.

This nonprofit has been incredibly key to bringing awareness to these conditions and persevering through medical and insurance challenges. I would recommend any parent or guardian of a child, or if they have it themselves, to dive into this Ear Community and find all you can to feel you are not alone and there is so much here to help you understand and guide you through all the support and resources.

Thank you Melissa and the entire Ear Community for all you do!

What a blessing Ear Community has been to me and the families with whom I work. As a parent of a child with microtia as well as an early intervention teacher working with families who have children with microtia, I find the resources and family supports so helpful. I have attended various events and always enjoy meeting new people and sharing stories. The sponsors are always friendly and informative. What Ear Community is doing to assist families is amazing and I will support them, financially and educationally, for as long as I am able!

Ear Community is very resourceful! The founder is friendly and knowledgeable. Being new to Microtia/Atresia, this is the perfect place to learn and connect with others experiencing similar journeys. Highly recommend Ear Community to others.

Melissa,

Congratulations on everything you have accomplished to provide invaluable high quality information to families and to advocate for and support individuals born with microtia. Ear Community is a game changer. When families come to us to learn about prosthetic restoration they have often already connected with Ear Community and are armed with information and questions. If families have not heard about Ear Community we immediately provide contact information. I observe a profound sense of relief that they are not alone. I have also noticed young adults born with microtia feeling especially empowered by Ear Community, even though you may not see them at picnics.

Because I have been working with families of children with microtia for over 3 decades I see the profound difference you have made. Before Ear Community, families would come to our office to learn about prosthetic restoration and would often not know the term microtia. Parents would express feeling very alone–that their child was the only person born with this difference. Families were very grateful for supportive information, which came in the form of a printed booklet from a Canadian organization called About Face.

I am a firm believer that people make better decisions when they have good information and understand their options. I am grateful for Ear Community and think you and Ally are amazing!

Regards,
Julie

Julie Jordan Brown, MAMS, CCA
Clinical Director
Medical Art Resources, Inc.
3400 S. 103rd St. Suite 200
Milwaukee, WI 53227
www.medicalartresources.com
414-543-1002
fax 414-543-0137

My son was born with Microtia, and I had no idea the condition even existed, much less had all these resources available to me. I love having this organization to help me network with fellow moms of this condition to help support and ask questions of one another. It has been a tremendous source of knowledge on the condition, and we LOVE going to the picnics every year and meeting all the representatives of hearing devices and the new medical advances.

Ear Community is a very unique and special nonprofit that provides support for families of children with Microtia/Atresia. This rare and unusual condition is evident at birth and leaves many new parents confused, scared and looking for answers. Ear Community provides many answers to parents' questions as well as hope for their child. Atresia causes hearing loss in either one or both ears. As a teacher of the Deaf and Hard of Hearing I work with many children with Microtia/Atresia. I have worked in early intervention and often referred families to Ear Community for the hope and support this nonprofit provides. I have seen families come together, meet and share their journey of raising a child with hearing loss. Summer picnics bring children and families together in an inclusive setting where differences are celebrated and strength is found for each child in knowing they are not alone in their journey with Microtia/Atresia. I am proud to be a board member of Ear Community!

Ear Community has been beyond special to our family. When I thought we were the only one, when I had questions and when my son or I needed support, Ear Community has been there. Melissa is a God send who I am SO lucky to have met. There is a place for Microtia kids and families with EC.

I was born in 1960 microtia atresia of the left ear. The only person I have met with atresia is a small child. I was so excited to find this fb page and group. They provide, information, validation, options, scientific data, support and love for people living with "little ears" and their parents. I am so grateful for this page and appreciate the wonderful jobs do.

My son was born with bilateral microtia and Atresia. My husband and I spent almost every night for he first year of his life online trying to find information. We had seen ENTs, audiologist and other specialist in our area but they didn't give us all the information we wanted.
Then we found Ear Community. We went to the conference at Vanderbilt University. It was life changing. We meet a team of specialists, other children, other families, hearing device company's and audiologist.
It is hard for me to explain how much of an impact this had on us. It gave us peace of mind, helped us come up with a plan to care for our son and the late research stopped.
I cannot recommend Ear Community enough. They changed our life and our sons for the better and I am forever grateful.

In 2018 I was able to obtain devices for a child with bilateral microtia atresia through Ear Community who otherwise may have never been fortunate enough to receive this gift of hearing. The staff at Ear Community were extremely helpful and maintained frequent contact throughout the entire process from beginning of the application to fitting of the devices. I am so thankful for Ear Community and especially for Melissa Tumblin for having the vision to establish such a needed nonprofit organization whose outreach has helped so many individuals with microtia atresia.

I only recently connected with the Ear Community in Spring and wish I had known about them years ago. I have learned so much about my daughter's microtia and about my options through the Ear Community support page on Facebook and through conversations over the phone with Melissa. I have received a tremendous amount of encouragement and emotional support from the organization.

Additionally, the Ear Community picnics have changed my daughter's life! Through our first picnic in Tennessee this past summer, my 8 year old daughter was able to meet others with microtia for the very first time and it helped her to not feel alone. My family and I are so blessed by the Ear Community!

I had never heard of microtia or atresia until my daughter was born. The Ear Community team gathered information to help me understand what these terms would mean for my daughter. They created a community where we help and encourage each other. There would be no other place for me to go without them. I am forever grateful for everything Ear Community has done for me and my family.

Ear Community is the best place to get factual, non-biased information on all things microtia and atresia related. Along with our doctor, this organization is our sounding board for making decisions as they relate to my son's bi-lateral microtia/ atresia. I'm very thankful for Melissa and her tireless efforts to build this community.

Due to the support of Ear Community, I was able to fit a kiddo with bone conduction devices who would have had no other way to obtain them. He did not have insurance and had limited financial resources. We found out very quickly that he had been approved for two Ponto 3SP on a softband. The organization was quick, responsive and very helpful. Everyone on his team, especially Melissa and Heidi at Ear Community were committed to making sure that everything was very clear to me, who had never worked with them before. I had never been through the process before, but they explained exactly the sequence of events and what needed to happen.

Additionally, I've had the privilege to work with one of their board members. She is motivated and enthusiastic about the cause! She is in DC for gradschool, but using the opportunity to work with her congressional representatives to improve insurance access and coverage for bone conduction devices. What a truly inspiring advocate for her community!

Ear community is full of passionate and persistent people who really care about the work that they are doing. I would recommend this to any patient who is in great need and can say from a professional standpoint, they are very easy to work with.

-Mary Finkbone, Au.D., CCC-A
Medstar Georgetown University Hospital
Washington, DC

My son was born this past March with a condition which caused him to have hearing loss in one of his ears and meant we would need to get him hearing aids as an infant. I had no experience with this and felt so lucky to learn about the Ear Community organization. It was amazing finding a resource focused on his condition and to find a community of other families who have gone through similar experiences.

I'm able to get advice and tips from the group's facebook page from families who have older children with the condition. But I felt especially lucky to learn about the Ear Community's summer picnic in Boston. Just a few months before I would be getting my son his first hearing aids, I was able to talk to hearing aid vendors at the picnic and meet and talk to families whose older children were thriving with the condition with and without aids. I am so grateful to all the work the Ear Community does to create community and advocacy for these amazing kids.

The EC showed me I wasn’t alone when my son was born with microtia and Atresia. It has educated me supported me through the years where I can now support and help others that they are not alone. My City, my school, my province, my country has benefited from the kindness of this amazing organization.

The ear community organization has opened up so many doors for parents and children to get the help they need for hearing aids and additional tools to help them function at a higher level In life!! Meeting all the amazing people that run this organization and all the people that are involved has been a highlight for me! I am a 66 year old woman that has Microtia and never knew what the condition was until my grandson was born 3 years ago with Microtia.I have learned so much from this organization.
It has been amazing to see all the advances and technology that is offered to children now.
I am so grateful to be involved with this organization. Melissa Tumblin does an amazing job helping families!

I contacted Ear Community through email, because we are not on Facebook and to my surprise, Melissa responded right away! I have read helpful articles and blogs on the site for years. Information is great, but I was trying to locate another local boy with Microtia around my son’s age, 15. We’ve never had a friend that personally understands, and it would mean the world. I didn’t know Ear Community was this family of incredible people. Even though we still don’t know who the local high school student is, it has opened the door to meeting so many others. Just a few days before I contacted Melissa, our son went to a hearing test and found out for the first time in 15 years he could hear out of his Microtia ear! The new ENT thought we already knew. Up until now, reconstruction surgery was the only thing mentioned. I started googling information on the Baha SoundArc and came across Ear Community again. Can’t thank Melissa enough! She has taken the time to reach out and open so many doors. I should have emailed her years ago, but glad I finally did.

When a very dear friend of mine had a daughter, she learned everything she could about her baby girl's condition. Through that, she found this great nonprofit org. and has continued her journey of learning and spreading all she can thru this AMAZING organization. It was through her that I learned about it. When one of my sisters was telling me about having to get some thing inplanted so she could hear (she was in her 50s) I was excited since I knew she was describing her BAHA. I talked with her about it and gave her the website to check, which she said was alot of good information. Thank you for people like Melissa!

So happy to have found this group! Thanks to their Facebook page & summer picnics, I have learned a lot about modern devices available to those with microtia & atresia.

The Ear Community is the most amazing organization, absolutely saved my life! So much support, information and love. Having a child born with microtia and artesia, with no answers, the Ear Community was there for me!

The support and community we have had from Ear Community has been vital to my daughter and our family. We look forward to the picnics and the knowledge that we are not alone! When my daughter was born in January 2016, I had never heard of Microtia/Atresia and it was frightening and daunting. After contacting Ear Community after a simple google search, I was instantly plugged into vitally important information and resources, it took a lot of burden and fear away! I know that Ear Community will continue to be a wonderful part of our my daughter's life!!

My first child was born with right microtia atresia and Ear Community was the only organization that was equip with all the support, information and management details I needed to care for my child that was born without a right ear canal, associated conductive hearing loss and underdeveloped ear. The founder personally contacted me right away and we spoke on the phone when my daughter was just a few days old! She helped me every step of the way, she provided support, sympathy, shared her personal story and battles and most of all, had endless knowledge and information to share that she had acquired through years of dedication, research and outreach. Thanks to Ear Community, my daughter has thrived as I was able to give her the best chance in life to blossom despite her underdeveloped ear.

Excellent organization putting together with people in need of information about Microtia.

My son was diagnosed with microtia and we knew nothing about it. A “google” search at the hospital lead us to Ear Community. The website had way more information than we knew from a brief and overwhelming trip to the ENT. When I contacted a manufacturer of bone conducting hearing devices, they put me in touch with Melissa. Melissa from Ear Community right away contacted me and then called me. She spent so much time talking to me about her own experiences with her daughter Ally, it was heartwarming knowing we were not alone on this journey. When your child is born with a little known condition, you scour the internet for any information you can. Ear Community and it’s staff has informed us and given us comfort that our son is going to be just fine. Furthermore, their immediate responses and fostering of such an inviting community is commendable. Ear Community fosters not only an online community but a chance for families to meet each other through picnics and a chance to meet vendors of different products that are of interest to individuals with microtia and atresia. This non profit is amazing and should be recognized for its hard work. When your doctors tell you as a parent that you will be the expert on a condition that few know much about, Ear Community is there to fill in the gaps from an information as well as emotional standpoint. Our family is forever grateful.

What can’t I say about such a great nonprofit that helps so many. It has been able to give bone conduction hearing aids to children in need. Also as a community others have been able to donate this very expensive hearing aids to families that need them. On top of all this the resources and support provided to help us parents in dealing with microtia atresia is amazing. The money you donate is spent very well in helping others.

My grandson was just born with microtia and atresia. I cannot even tell you how greatly happy we were to find this page. The ability to know other people were going through the same thing, the advice, and the ability to find information and know there was help out there. After reading the page and going to links and carefully reading what to do next we feel ready to get through this. My grandson is almost 2 weeks old and in a couple days we will be at Uof M for our appointments to the audiologist and ENT. With this page I felt like a better advocate to ask the peditrician to send us to the important specialist ASAP. We are a grateful family and recommend this page!! Thanks Again!

We LOVE Ear Community! The information has been awesome, we went to a picnic and I was brought to tears to see other children just like my little girl. This organization is a godsend and I am so glad to have found it!

As most other parents of a child born with Microtia Atresia we were clueless when she was born as were the doctors and nurses we came in contact with. I found out about Ear Community (EC) while searching online and it has been a wonderful experience for us.

Many parents feel like they are on an island and Ear Community has made us and our daughter realize there are children all over the world like her. EC hosts picnics internationally as well as in the US, educates medical professionals and advocates for our children. Working with hearing device manufacturers, we are able to donate hearing aids to need-based children worldwide. Without this organization, parents would have to spend countless hours searching for answers that aren't readily available.

Our founder, Melissa, works tirelessly to grow the organization while searching for funding. While Ear Community may not be as well know as other causes, it is vital to parents and any size donation will have an amazing impact on our children.

Ear community has been a blessing in our son's journey with dealing with Microtia/Atresia. When I first had my baby I was totally clueless. Luckily after only a few weeks, I found the group online and I joined the support group on FB. Ear community has helped so many encounter advice, help, support and even their own aids. Through the organization we have been able to meet others in our same situation. We were lucky enough to make it to one of the picnics and we were able to meet many families with kids with Microtia. Ear community has also done a wonderful job in trying to share Microtia Awareness. Truly a blessing!! Thanks Ear Community!!

Ear Community is a nonprofit organization /network for those who have and know loved ones with Microtia and Atresia. This is a place of immense knowledge and a great to seak information and advice. The Ear Community is an amazing community, they care and support whenever and however the can.

The day my son was born we learned he had bilateral Microtia/ Atresia. Since then I found the Ear Community online/ Facebook and I sent a message seeking advice not knowing what to expect or what to do next. The founder (Melissa Tumblin) sent me a long reply with tons of information, what to expect, what specialist I should set appointments with and most important of all gave us hope and encouragement to be the best advocates for my son now (4 months old). I'm so grateful I found this organization early on to get the resources, support and peace of mind we needed. They've been a Godsend

When my son was born with Microtia and atretia, at first I didn't know what it was so I felt devastated I had no one to turn to, I felt alone confused about my sons future. I did several google search until I came across the Ear Community. I sent them a message asking for help, they reply right away with tons of information and support. Today thanks to the Ear Community I know a lot more about my sons condition.

I LOVE Ear Community! I have gotten so much support, and education from this organization's website. Truly a life-changer for my family!

Amazing people and amazing network of volunteers! They helped me in my time of need and I am forever grateful! I help and donate what I can!

Ear Community is such a fantastic organization. They offer support, resources, and information and provide a community to feel a part of. We are so thankful to have the Ear Community to rely on.

We love the Ear Community!!!!! ❤️❤️❤️
So thankful for an amazing group that is so full of support and information for the Microtia/Atresia community.
Thank you for all that you do!! ❤️