Dr. Leslie Gonsette (right) with friend and volunteer, Kati Capozzi, during the Physician’s Ball in Alaska on Saturday, January 26th, 2019

On, Saturday night, January 26th, Dr. Leslie Gonsette of the Alaska Hospitalist Group, hosted The Community Wide Medical Staff Ball in Anchorage. The physician’s ball was a hit thanks to the collaborations of Providence Alaska Medical Center, Alaska Regional Hospital, Mat-Su Regional Medical Center and Alaska Native Medical Center! Over 180 people attended with nearly $18,000 being raised that profited four health care related charities:
EAR COMMUNITY ORGANIZATION –  www.EarCommunity.org/donate
ALASKA CHILDRENS TRUST –  www.AlaskaChildrensTrust.org
STONE SOUP GROUP – https://donatenow.networkforgood.org/stonesoupgroup
MAT-SU HEALTH SERVICES – www.MSHSAK.org

Dr. Gonsette, is a board certified physician in both internal medicine and pediatrics.  Dr. Gonsette says she, “had a wonderful time organizing the ball and hopes to coordinate this event again next year!” Dr. Gonsette realizes how important charity organizations can be to families and to the community.   She also knows how important raising funds for them is in order to help keep them doing the good they do in our communities. Dr. Gonsette was happy to help give back!

I will always remember the day when I met Dianne Goberis. I was a scared mom trying to advocate for my youngest daughter, Ally, who was born with Microtia and hearing loss (due to Aural Atresia). I was looking for a preschool program that would provide my daughter with the help she needed as a child who was hard of hearing. To my surprise, our early intervention speech therapist informed me of a couple of options nearby, one including the program that Dianne managed at Mountain View Elementary School. One day, Ally’s speech therapist scheduled a visit in Dianne’s classroom for us to observe in. When I met Dianne, she was so kind…taking time to speak with me, explaining about her preschool classroom and program for children who were D/HH. Her classroom was bright and cheery. As I watched Dianne’s students learning and carrying on, one little girl walked into the classroom a few moments later. Dianne introduced me to this little girl and said “this is Illi.” Dianne explained that Illi just had her picture taken for her birthday and for the library birthday book program. Here was this sweet little four year old kindly saying “hi” while signing her name at the same time.

As I left Dianne’s classroom that day, I couldn’t help but feel emotional. You see, Illi had Microtia and Atresia just like my daughter! I was so relieved and happy to see a little girl who was just a little older than my daughter and who was so confident and happy. My mind fast forwarded years in advance imagining my daughter being just as confident and carrying on just like Illi. I went home and cried tears of happiness. Not only did I think Dianne’s preschool classroom was amazing, but I could not believe the odds of finding another child in this classroom who was just like my Ally. I had been told that Dianne’s program was highly sought after as one of the top programs within the school district that offered amazing D/HH services because Dianne was the best. I was told that other teachers even referred to her as “Goberis” because she was in the trenches and did an amazing job with results. I also learned that many families would relocate from other states just to move into the very neighborhood where Dianne Goberis teaches so their children who are D/HH could attend Mountain View Elementary School and receive the help they needed from Dianne. I quickly realized how blessed my family was after having lived in our neighborhood for the past 12 years never knowing that one day I would have a child that would be born with hearing loss and be able to benefit from a top school just down the road from our home.

As Ally transitioned from her IFSP to her IEP, it was time to inquire about an opening in Dianne’s classroom. Now, Ally “only” had unilateral hearing loss as some would say, but she was experiencing speech delays along with some additional delays at the time. The school that Dianne taught at was also not our home school. So, I was worried that Ally would not qualify for Dianne’s program. However, Ally’s early intervention team reached out to Dianne to schedule a visit. I was so impressed that Dianne took the time to come to my home to observe Ally during this visit and determine if she should be placed in her classroom. Thankfully, Dianne believed that Ally would benefit more in her classroom where she could receive the extra help she needed in addition to receiving helpful services for her hearing loss and we lived within the school district. This was just the beginning of something far more amazing than I would have ever imagined and how one teacher and her program would touch my family’s heart.

During the three years that Ally spent in Dianne’s preschool classroom, I watched my little girl grow and shine. Dianne was amazing!  She always took the time to listen to my concerns when I was worried about Ally and she would gently offer helpful suggestions or thoughts that would help guide me on how to help Ally. Each day, Dianne’s classroom was full of new adventure and excitement for my daughter and her peers. When picking up Ally from school, I would often witness Dianne singing fun songs like “five little speckled frogs” with the kids and playing fun games with them. Her class celebrated parties together and the kids made fun things with food items like sandwich school buses with Oreos for wheels. The kids learned about sensory and touch with all kinds of things to feel with their hands, from flour dough to beans in a bin and shaving cream. One of Ally’s favorite adventures in Dianne’s class was camping week (when a tent and sleeping bags were set up in front of the main entrance of the school). Camping week also came with crock pots of chili and baked beans with corn bread to help celebrate the wild west with the kids dressed up as cowboys and cowgirls. Dianne and her staff worked hard to organize preschool performances for families each year – from a rodeo performance with the kids dressed up wearing cowboy hats to a circus performance taking place under the big top (the parachute), with all of the kids being vocal and signing, together. They were such a joy to watch!  As Ally got older, she was included in even more fun activities and programs that Dianne was very much behind creating including D/HH Track and Field Day, visiting Signing Santa, signing choir as a “little” and taking field trips to the Arvada Arts Center to see performances where sign was present and available.

Dianne always made sure her students had the best. One year, I remember a local Mexican restaurant raised and donated $50,000 for Dianne’s program! I know Dianne knew exactly how she wanted to apply those funds for the kids because I remember her excitement for the new interactive itouch screen she was able to get for the kids to help them learn more. My daughter loved that itouch screen! This was just one of the helpful tools Dianne was able to obtain for the classroom.  During the years Ally was in Dianne’s classroom, a few more children with Microtia and Atresia were placed in Dianne’s class which was amazing in itself. In fact, there were nearly ten children in the school at one time who were born with Microtia and Atresia. When I would tell people about the school that Ally goes to, I would always talk about how amazing Dianne was and about all of the wonderful programs she had created to help children who have hearing loss. I would often say that my family was blessed and that we live in our own bubble.

While most of the days for Ally and her classmates were happy and positive, I noticed how other days were probably not always fun days and smiles for Dianne and her staff. I quickly realized the amount of patients and commitment that Dianne and her staff showed while working with and helping all of the children in her classroom on so many different levels. There were days where Dianne spent time trying to console crying and screaming students during meltdowns to finding better ways to connect with the children who experienced fears in the classroom, helping them to cope and overcome those fears. There were days of having to help clean up bathroom accidents from some of the kids too and still Dianne would manage to go on with a smile. Dianne’s love for children was so genuine. Dianne helped educate so many children during her 30 years of teaching. She helped children with special needs in addition to those with hearing loss during her career at Mountain View Elementary school. I truly believe Dianne loved all of these children because I know she loved my Ally. Dianne made sure her students were their happiest in her classroom. She provided them with every opportunity to learn and how to be themselves. Dianne helped these children, including my Ally, realize that they can do anything in life as individuals who are D/HH.

Dianne helped me realize that there are truly amazing teachers in our world.  Some that will surprise you with what they can do to help our children thrive. Dianne was one of these amazing teachers! Since getting to know Dianne, I now have a deep respect for teachers of the D/HH. I also realize that Dianne was one of the angels we had here on earth, one who went above and beyond to help others. There is no doubt in my mind that Dianne had a vision when she started teaching and she took that vision to the highest level from helping create so many these programs that Mountain View Elementary School has now because of her. I am grateful for my daughter to have been given the opportunity to learn sign while at school and to be provided the help she needs through amazing programs. I can only imagine how many policies and procedures Dianne also helped implement to help make things better for students over the years. Dianne has helped advocate for so many children and their families in IEPs and 504 Plan meetings in addition to helping teach families how to help advocate for their children on their own. Dianne was an inspiration and a leader who helped pave the way for D/HH teachers. So many men and women, some even past students, have gone on to become teachers of the D/HH and focus on special education because of Dianne being such an amazing role model. Dianne was also recognized for many awards for her leadership and for the difference she made in the D/HH community. With Dianne being such an amazing advocate for so many families over the years, I can only imagine what an amazing advocate she was for her own children and family. Dianne touched many hearts at school, through many community organizations, and with her work at Marion Downs. Dianne’s legacy will live on through all of the amazing teachers, staff, and friends that she knew and worked with for decades to come. Maybe someday, an award for the school district will be created in Dianne’s name for outstanding D/HH teacher of the year. Dianne was such an amazing inspiration and such a dedicated individual to helping others.

This is just one of the many stories that I am sure has been shared about Dianne and about how many hearts she touched of so many families over the years. Thank you for all that you did to help our children, including my Ally, over all these years.  And, thank you for all of the amazing teachers that you leave behind who continue to share your inspiration at Mountain View. Ally and I know we are in excellent hands thanks to you, Dianne!
While you may be gone, you will never be forgotten.
We will miss you, Dianne!
– Melissa and Ally Tumblin and Family

Dianne passed away on January 16^th, 2019, at the age of 59, peacefully with her family by her side after losing her fight to
pancreatic cancer. On January 26^th, Dianne’s family, friends, students, and co-workers joined Dianne at a beautiful service honoring her life, traveling from near and far. It was said many times that Dianne lived a full and happy life and that her smile was contagious and was one that would light up a room. Dianne was one of the kindest people alive. Dianne was loved by so many who knew her in life. Our hearts go out to Dianne’s family for this terrible loss. Thank you for sharing your Dianne with all of us. Some of Dianne’s former students, parents of students, current and retired teachers, interpreters, and a retired principal came together to sign a song to honor our beloved Dianne. Thank you to Dianne’s friend and co-worker, Jenna Harris, for organizing this tribute to our Dianne.

Here is the link to the video, “Heaven was needing a hero,” by  Jo Dee Messina

Here are some memories of Dianne that made my family smile:

Duong and his family receiving his 2 newly donated Oticon Medical Ponto 3 Superpowers in Hanoi, Vietnam on December 22nd, 2018.

Meet Duong, a very sweet little boy who lives in Hanoi, Vietnam who was born with Microtia and Atresia of both of his ears. Duong is almost 3 and lives with his mother, Co, his father, and other family members where they have fought to find resources to help Duong hear his best and have the best access to sound.

Co first reached out to Ear Community through our Facebook support group page, Microtia and Atresia Support Group, during the Summer of 2018.  Co was looking for resources to help her son, such as early intervention services but none were available in her area.  We were quickly touched by Duong’s story and how he has struggled to hear his mother, playmates, and family member’s voices.  Co then applied to Ear Community for assistance with hearing devices for Duong when she didn’t know what else to do.

As soon as Co learned that Ear Community’s board had voted to help Duong obtain two Hearing devices, the lengthy process of helping get Duong’s newly donated Oticon Medical Ponto 3 Superpower hearing devices soon began.  As they say, “it takes a village!”  Thank you to audiologists Patrick Tan (Oticon Medical) for program Duong’s new Pontos and ship them to Flavio who then traveled to Singapor to get Duong’s Pontos to him in Vietnam.  Once Duong’s Pontos arrived in Vietnam,  a special thank you to Thanh Thanh Mai for fitting Duong’s new Pontos for him in Hanoi.  On December 22^nd, 2018, Duong was fitted with his two newly donated Oticon Medical Ponto 3 Superpower hearing devices – just in time for Christmas!  Duong and his family traveled over 100 kilometers away from his home to get to Thanh Thanh Mai’s audiology office.  At first, Duong was a little nervous about the headband and the devices, but he quickly became excited once he began hearing everyone’s voices. Co, Duong’s mother, could not say ‘thank you’ enough – she wishes to thank all of the people at Oticon Medical who have helped along this journey, the members on our Facebook support group, everyone at Ear Community, and a very special thank you to Melissa and Heidi for being so instrumental in helping Duong hear with two Oticon Ponto 3’s.

Duong’s heart-warming story reminds us that Christmas truly is a time of giving back and helping those around us.  Ear Community is honored to be a part of helping so many families around the world be able to connect through sound.  Thank you so much to Oticon Medical, for partnering with Ear Community and giving us the opportunity to change lives.  Thank you to Patrick Tan, Flavio, and Thanh Thanh Mai for your tireless efforts to get Duong’s devices programmed and hand-delivered to Hanoi. This is the very meaning of giving back and going that extra mile to help someone in need.  Thank you to everyone at Oticon Medical for showing Duong and his family so much love and support!  Ear Community applauds the passion and effort that was involved with these individuals in helping another child hear better, so Duong can hear the way life was intended.

Duong looks forward to hearing all of the wonders of the world around him, playing with his friends and being able to hear the conversations and jokes he can now be a part of, hearing his parents as they sing and talk to him, and of course hearing his classes in school when he is old enough to go.

A very special thank you to Alan Raffauf, Vice President of Marketing and Operations for Oticon Medical US, for choosing to donate the two new Oticon Medical Ponto 3 Superpower hearing devices to Ear Community so that they could be donated to Duong to help him hear better. Thank you to Beverly Ostrowski, Director of Customer Service, with Oticon Medical for helping ship Duong’s hearing devices.

Thank you for everyone’s support and for helping Ear Community continue with its mission of helping individuals with Microtia and Atresia. Oticon Medical believes in helping individuals with hearing loss so that they can live a better quality of life. Oticon Medical is a well-respected international hearing device manufacturer that is a part of the “William Demant Group [which has] 100-plus years of experience in audiology and sound processing and established manufacturing and logistics infrastructure.”

We wish every happiness for Duong and his family and are so happy that he was able to get such a wonderful Christmas present!
Thank you from everyone at Ear Community
www.EarCommunity.org

Hazel Shelton donated her hearing device to Marvin so he could hear better in November 2018.

Meet Hazel Shelton, a sweet little 4.5 year old girl who was born with Microtia and Atresia.  Recently, Hazel upgraded to a new hearing device just before moving with her family from the United States to live in the UK.  When it came time for Hazel to upgrade her hearing device, she and her family wanted to make sure that her gently used hearing device went to someone in need.  Hazel and her mom, Jillian Shelton, know how important it is to hear your best and when Hazel’s family began looking into organizations to donate her hearing device to, they wanted to donate to an organization that not only helps children who were born with Microtia and Atresia, but one that would allow Hazel to help another child in need.  Luckily, Hazel’s family knew about the Ear Community Organization and decided to donate her gently used Baha 5 to Ear Community to help another child hear better.

The Ear Community Organization enjoys partnering with local hearing loss organizations and audiologists to help children and adults who have hearing loss whenever possible.  The Marion Downs Center in Denver, Colorado is one of the local hearing loss treatment centers that Ear Community enjoys partnering with.  This past September, Ear Community donated a few hearing devices to the Marion Downs Center, along with the hearing device from Hazel’s family.  This November, the Ear Community Organization was contacted by Dr. Sandra Gabbard, of the Marion Downs Center, who reached out to Ear Community about a patient who was born with bilateral Microtia and Atresia who had never been aided before and who was struggling to hear.  This little boy is Marvin, who is nine years old and since birth, has never been able to hear his best.  Marvin was also in need as his family is from Honduras and are in the process of moving to the United States.  Without insurance coverage or money to help cover services for a hearing device, Hazel’s gently used Baha 5 was gifted to Marvin.  A special thank you to Dr. Gabbard for helping program and fit Marvin’s donated Baha 5 so he could hear better.  Dr. Gabbard stated that “Marvin is now able to hear normal loudness speech for the first time with his BAHA!  Being born with bilateral Microtia and Atresia has prevented him from hearing his best for the past 8 years of his life. What a gift!”  Thank you also to Cochlear Americas for donating a black soft band head band for Marvin to wear his donated Baha 5 on.

Marvin being fitted with his donated Baha 5 from Hazel so he could hear better

Thank you to Hazel for donating her hearing device to Marvin and for helping give him the opportunity to hear better than he has ever heard before.   We know that Hazel and her family are thankful to have been able to help give back to another child in need who was born with Microtia and Atresia just like Hazel.  During this time of year, when many people help give back and give thanks, giving and donating is what makes it so special and being able to help make a difference in someone’s life.  Thank you so very much to Hazel and Jillian Shelton and Family for choosing to help Marvin hear better with Hazel’s hearing device!  Happy Thanksgiving and the Ear Community Organization, along with Marvin and his family, are thankful for you!

We are so happy for Marvin to have received the gift of hearing thanks to Hazel and for Hazel wanting to donate her hearing device to another child in need!  Thank you for making Marvin’s Thanksgiving this year extra special with sound, Hazel!
Thank you!
Ear Community
www.EarCommunity.org

A local elementary school in Colorado.

On Friday, November 9th, 2018, children and adults along with their families, teachers and schools, medical professionals, and many medical facilities and universities all embraced our third annual National Microtia Awareness Day all over the world!  Families everywhere were excited to raise awareness and help educate about Microtia and Atresia at schools through classroom presentations where children educated about their ears, hearing loss, and being kind and teaching about differences, enjoying cup cakes and treats.  So many children shared a newfound confidence where they got up in front of their classrooms and talked about their ears and their hearing loss (while wearing their Microtia Awareness Day t-shirts) and explained why having an awareness day was so important to them.  Adults who have Microtia and Atresia helped raise awareness in the work place by wearing their awareness wrist bands or Microtia t-shirts.  Medical professionals from Microtia and Atresia repair surgeons, pediatricians to ENTs, audiologists and dentists, all blogged about our special day on social media and hosted educational clinics for Microtia and Atresia families to attend where all options could be presented.  Our organization also received an outpouring of thank yous from families all over the world, being grateful for this special day to celebrate their children on.  Many wore our blue awareness ribbons and many also had fun creating their own drawings and wearing hand made ribbons and pins and stickers to celebrate the day!  So many families are happy to know that they are not alone with Microtia and Atresia.  Even families with newborns affected by Microtia and Atresia found hope and a sense of belongingness with everything being so new to them.  There were also a series of group gatherings that took place with Microtia and Atresia families coming together to celebrate on our special day.

The Seidman Labs Harvard genetics team w/Angela Tai and Barbara McDonough

Some of the medical facilities who embraced of our awareness day (as many offer Microtia and Atresia clinics, are conducting genetic research, or educate about Microtia and Atresia) were Vanderbilt University Medical Center, Children’s Hospital Seattle, Children’s Hospital Pittsburgh, Children’s Hospital of Philadelphia, Children’s Hospital of Texas, Harvard University, Johns Hopkins, ReconstratA, Stanford University, the University of Michigan, Children’s Hospital of Philadelphia, the NIH, the Gabriela Miller Kids First Foundation and the First Data Resource Center, the NIDCR and many government patient advocacy committees for rare causes, AudiologyOnline, HealthyHearing, SuccessForKidsWithHearingLoss, the Fundacion MicrotiaeHipoacusia in Chile and Audio Centro in Ecuador, just to name a few as I continue to receive more messages that continue to pour in.  Many hearing device companies and medical device companies such as Cochlear Americas, Med-EL, Medtronic, Oticon Medical, and Stryker CMF (the maker of Medpor) socially blogged about National Microtia Awareness Day, celebrating in their offices and educating employees more about hearing loss and Microtia.  Many amazing moments took place on this special day for families and individuals with Microtia and Atresia everywhere!  Professional artist, Priscila Soares (California) created a piece of art in the image of the Tumblin Family’s daughter, Ally, in a piece she calls “Ally is Looking Out for Microtia” which is amazing and beautiful in so many ways s Priscila creates 3D artwork of real people behind hearing loss!  Dr. David Zopf at the University of Michigan performed a rib graft Microtia repair surgery on the 9th and wore his blue awareness ribbon all day (see

The staff at the Vanderbilt Microtia and Atresia Clinic

photo below of him and his patient with his beautiful new ear).  Dr. Luis Serrano helped bring Microtia and Atresia families together at an educational event in Mexico!  Oticon Medical played educational video clips throughout the day in the office, helping educate the organization’s 500 employees in the US about Microtia and Atresia while each employee enjoyed a blue awareness day cupcake.  Oticon Medical Denmark released a beautiful video showing employees releasing blue and white balloons, embracing children and adults who have Microtia and Atresia, helping children and adults with Microtia and Atresia know that they have the potential to do and become anything in life.  Med-EL organized a radio clip on Sirius FM with NYU’s Dr. Sean McMenomey – the host of “Doctor Radio” where Microtia and Atresia was discussed along with talking about a conductive hearing loss.  A shout out to the Ear Community Organization went out at the end of the clip.  We even had country singer, Luke Bryan, wear our blue awareness band during his October 26th Detroit, MI concert after one of our support group members (Katie Davison) was attending his concert where she gave it to him and he put it on and wore it during the rest of the concert!

Hundreds of children and adults, along with their families, submitted pictures to online support groups in their National Microtia Awareness Day t-shirts and/or wearing blue and black, celebrating and helping promote awareness.  Many changed their online profile pictures to our Ear Community awareness ribbon.  Many also changed their Facebook profile pictures to the beautiful official Microtia Awareness profile frames/boarders on Facebook created by Ear Community support group members Megan Mitchell and Mark Johnson.  Our Microtia Awareness FB frames were used over 1,500 times!  Excitement about celebrations everywhere were blogged on Instagram, Twitter, and Facebook.  Not only did families celebrate in the US, but also from many countries all over….Canada, the Philippines, Ecuador, Peru, Argentina, Mexico, Costa Rica, Australia, Malaysia, Denmark, the UK, Poland, Ireland, China, Israel, Indonesia, New Zealand, Russia, Denmark, Germany, Facebook Global, Netherlands and Turkey and many others.   Many families from other countries have embraced November 9th as International Microtia Awareness Day!

November 9th is dedicated to spreading hope and knowledge concerning a congenital birth defect, which derives its name from the Latin terms for little ears.  Mark the calendar for Microtia Awareness Day for November 9th and think of the number 9 as the shape of an ear.  In an interview with AudiologyOnline, Tumblin was asked “Why was it so important to have a national awareness day created?  Tumblin stated, “It is the intention of Microtia Awareness Day to help promote public awareness.  As the mother of a child who has Microtia, and the founder of Ear Community, my hope is that families who have new babies born with Microtia will leave the hospital armed with more answers than questions, and their dreams for their children intact.  I think that if more people learn about Microtia and Atresia, that they will be kinder and more accepting.  It is also my intention for anyone who is born without an ear(s) to realize that they are not alone.  Through this national day, they can find out about organizations and resources for information and support.”  Since 2010, the Ear Community Organization has brought over 8,500 people together from around the world at the organization’s events making it possible to share experiences and resources. The community is made up of not only children and adults with Microtia and their families, but teachers, advocates, and medical professionals from around the world who foster awareness and assistance for this amazing group of people. Board members for Ear Community either have the condition themselves or a family member who does, so they have close personal experience with the obstacles from a myriad of perspectives.In a press release by, Melissa Tumblin, Founder of the Ear Community Organization, she explains that “Approximately one child in every 9,000 (in the United States) is born with Microtia (when the ear(s) do not fully develop during the 1st trimester of pregnancy).  Often affecting one ear or both ears, Microtia is diagnosed at birth, but there is no understanding as to why Microtia occurs. Facial challenges, hearing loss and the longing for social acceptance are some of the daily concerns for those who are born with Microtia.  “Children are born into this world not knowing they are any different from anyone else. Many with Microtia share similar stories of curious stares, bullying, or awkwardness.  Individual personalities, social conditioning, available treatments and bullying all impact how every child develops and copes as an adult.  By removing unnecessary boundaries and replacing them with resources, tools, and support, we can eliminate bullying and clear the way for an even more successful future.”

Oticon Medical Denmark awareness day video here (via Facebook).
Oticon Medical Denmark awareness day video here (via LinkedIn).

A thank you from the Founder of Ear Community, Melissa Tumblin:
“THANK YOU to everyone who embraced and participated in National Microtia Awareness Day this past Friday on November 9th! My heart is filled with so much love and joy, seeing the belongingness of so many families around the world who have been able to come together with children and adults who have Microtia and Atresia. From friends and family to surgeons, ENTs, audiologists, dentists, therapists and local businesses, to the medical device companies who help our children hear better and have the option for reconstructed ears, to the schools and teachers who enjoyed their students making presentations in the school classroom with a new found confidence in themselves, to families and medical professionals and the government organizations and universities who raised awareness all over the world for our beautiful children and adults who have Microtia and Atresia, promoting education, awareness, and kindness – Thank you! As Ally says, “everyone is beautiful!”

Here are some amazing memories from our 3rd Annual National Microtia Awareness Day!
See everyone next year!
Ear Community
www.EarCommunity.org

Estafany Martinez Hernandez, 8 years old of South Carolina, with her two newly donated Oticon Medical Ponto 3 Superpower hearing devices

Ear Community is thrilled to introduce you to Estefany Martinez Hernandez, an 8 year old little beauty who lives with her mother in South Carolina.  Earlier this year, Estefany moved to the United States from Honduras and has had an uphill battle ever since. Estefany was born with bilateral Microtia and Atresia as well as a cleft palate (which has since been repaired).  Her first language is Spanish, and after moving to South Carolina, she was thrown into school where only English is spoken. She has struggled with the language barrier all without equal access to sound! Still, Estefany perseveres and is able to get access to language through her mother, they sit very close together and Estefany reads her mother’s lips.

In the Spring of 2018, Estefany’s situation was brought to the attention of Dr. Dorothy Saxon, who works with Estafany’s school district. Dr. Saxon had been to an Educational Audiology Association conference in Arizona where Melissa Tumblin presented about Microtia and Atresia as well as Ear Community.  Naturally, when Estefany walked into Dr. Saxon’s life, she immediately thought of Ear Community. Dr. Saxon reached out to Melissa and it quickly became apparent that Ear Community can and should help Estefany get access to sound.

After a unanimous vote from our Ear Community Board of Directors, Estefany was granted a donation of two brand new Oticon Medical Ponto 3 Superpower processors for her journey towards sound could begin!  It has been a long, and bumpy road – between finding interpreters for Estefany’s sweet mother who speaks only Spanish, and getting schedules to coincide so that the fitting could take place.  Amazingly, and just in time for National Microtia Awareness Day, Estefany received her two Oticon Medical Ponto 3 Superpower processors on November 7th.  Estefany absolutely loves her new devices, and some of her first words after having them fitted were, “Thank you for my new sound!”  

A very special thank you to Alan Raffauf, Vice President of Marketing and Operations for Oticon Medical US, for choosing to donate the new Oticon Medical Ponto 3 Superpower hearing devices to Ear Community so that they could be donated to Estefany to help her hear better from here on out. Thank you to Beverly Ostrowski, Director of Customer Service, with Oticon Medical for helping get Estefany’s hearing devices to her so quickly, and a very special thank you to Dr. Dorothy Saxon for her tireless efforts to help Estefany hear.  Thank you for everyone’s support and for helping Ear Community continue with its mission of helping individuals with Microtia and Atresia. Oticon Medical believes in helping individuals with hearing loss so that they can live a better quality of life. Oticon Medical is a well-respected international hearing device manufacturer that is a part of the “William Demant Group [which has] 100-plus years of experience in audiology and sound processing and established manufacturing and logistics infrastructure.”

We are so grateful to be a part of Estefany’s journey, and cannot wait to see all that she accomplishes now that she has access to sound.  Welcome to the United States, and welcome to the Ear Community family, we wish you all the very best from this world!
Thank you!
Ear Community
www.EarCommunity.org 

National Microtia Awareness Day is on November 9th!

We look forward to helping raise awareness with so many of you everywhere on National Microtia Awareness Day!   The purpose of National Microtia Awareness Day is to help promote public awareness about Microtia and Atresia.  As the mother of a child who has Microtia and Atresia, and the founder of the Ear Community Organization, my hope is that families who have new babies born with Microtia and Atresia will leave the hospital armed with more answers than questions, and their dreams for their children intact.  If more people learn about Microtia and Atresia, they will be kinder and more accepting.  It is also my goal for individuals with Microtia and Atresia to realize that they are not alone and that they have an entire community of support behind them. Through this national day, everyone can find out about organizations and resources for information and support.

The 4 Grades-of-Microtia-and-Atresia

Microtia – born with one or both ears missing or when the outer ear does not fully develop

Aural Atresia – born without an ear canal or an underdeveloped ear canal, resulting in a conductive hearing loss

Approximately 500 babies are born each year with Microtia and Atresia in the United States (affecting 1 out of every 6,000 births).  Current statistics show that Latino-Hispanic, Ecuadorian, Asian, and Native American ethnicities are affected more by Microtia and Atresia where as individuals who are of African American descent are the least affected.  Most families who have a child with Microtia and Atresia have never known anyone else in their family to have missing ears or congenital hearing loss, while many other families have multiple family members who are affected by Microtia and Atresia causing us to wonder if Microtia and Atresia is hereditary.  It is more common for Microtia and Atresia to affect the right ear and occurs more commonly in males.  Microtia and Atresia can affect one or both ears and can cause asymmetry of the face (where one jaw bone pulls upright more so on one side) known as Hemifacial Microsomia.  Typically, children and adults who have Microtia and Atresia have some degree of hearing loss.  Children and adults who have Aural Atresia (hearing loss) can wear a hearing device called a bone conduction hearing device (also know as a Baha, BAHS, or BAI).  A bone conduction hearing device can be worn on a soft band head band (because there is usually no ear for a hearing device to be worn on) or can be implanted in the skull after the age of five.

Today, there are many options for helping someone obtain an ear who has Microtia and Atresia and who would like to live a better quality of life and be happier.
1.  The “Do Nothing” option should always be embraced with acceptance and confidence and love for oneself.  Also, to remember to never let anything define you.  Be YOU and be proud of who you are!
2.  There are surgical options for a reconstructed outer ear such as the rib graft surgical technique (which is the gold standard option) and different kinds of Polyethylene ear frame work options known as Medpor, Omnipore, and Su-Por.  There are also other avenues for ear reconstruction that can involve soft tissue reconstruction and ear expanders to help improve the shape of an ear.
3.  There are surgical options for helping restore hearing loss and reconstructing an ear canal called canalplasty and atresiaplasty.  this surgical technique can be done separately or in conjunction with a reconstructed outer ear (know as CAM – combined Atresia Microtia).
4.  There is the prosthetic ear option.  This option can help someone permanently wear an ear or be a great temporary solution until deciding upon surgery or to keep their little ear just the way it is.
5.  There is a hearing device option to help someone hear better who has Atresia called a bone conduction hearing device.  This hearing device can be worn on a soft band head band (since there is no ear to be worn on) or later be implanted in the skull for when the patient is ready.

The Microtia Awareness Ribbon

Here are some ideas for helping raise awareness on National Microtia Awareness Day, November 9th, 2018:

1. Many parents, teachers, and children plan to help raise awareness at their schools. There will be talks and presentations about hearing loss and Microtia and Atresia.  Many educators and parents will also be discussing differences and kindness.  Everyone has something going on and it makes everyone happy to feel included, or to have someone just say “Hi” to you instead of being stared at or being treated mean in one manner or another.  Many families plan to bring in sweet treats to the schools, such as cookies and cup cakes, to help embrace our awareness day and make it fun!
2. Many medical professionals (audiologists, ENTs, and plastic surgeons) will be hosting educational clinics and blogging helpful information about Microtia and Atresia for families to learn more about their options for Microtia and Atresia.
3. Many families, teachers, medical professionals, and supporters within the Microtia and Atresia community will be wearing awareness t-shirts, ribbons, and wrist bands, helping raise awareness about missing ears, hemifacial microsomia (craniofacial challenges), and hearing loss.
4. Many can participate in spreading awareness through social media by simply changing your profile picture to our awareness ribbon, logo, or FB frame to help recognize National Microtia Awareness Day on November 9th!   We look forward to seeing so many pictures posted of everyone in their shirts or wearing blue with our blue ribbons so we can all enjoy seeing how special our day is and the impact it has on the public (world) for so many of us who have loved ones born with Microtia and Atresia.  Let’s join together and make a difference with these beautiful children and adults and their families through the Ear Community Organization on our awareness day!
5. Many hearing loss networks such as AudiologyOnline, organizations like the EAA and ASHA, and medical device companies will be blogging about our National Microtia Awareness Day on social media in hopes of helping raise awareness about Microtia and Atresia, helping support our Ear Community Organization, and to help educate everyone about “all” options for missing and underdeveloped ears, hearing loss, and facial challenges and in hopes that everyone will be kinder and more understanding.

Thank you, thank you to everyone for embracing our awareness day and for supporting our children and adults who have Microtia and Atresia in our community.  Thank you to all of the families, classroom teachers and teachers of the D/HH, therapists, audiologists, ENTs, pediatricians and general practitioners, and plastic surgeons for helping educate on our day and for taking the time to learn more about Microtia and Atresia to help teach others.  Thank you to everyone who will be blogging on social media and publishing articles to helping raise awareness on November 9th!  Thank you very much to everyone who has helped support our Ear Community Organization and it’s mission to help children and adults who have Microtia and Atresia!

A special thank you to Ear Community’s amazing sponsors for also helping raise awareness about Microtia and hearing loss and for making our events possible and for offering advanced technology that helps our children and adults in many ways.  Thank you also to our sponsor companies and the employees who stand behind these companies and their technology that give our loved ones a better quality of life!

Thank you to Ear Community’s Platinum Sponsors:
Cochlear Americas (Baha 5 and SoundArc sound processor)
Oticon Medical (Ponto 3 Superpower and streamer)

Thank you to Ear Community’s Silver Sponsors:
Med-EL (ADHEAR and Bonebridge sound processors)
Stryker CMF (Medpor outer ear implants)

and to Medtronic (Alpha 2 MPO E+) sound processor